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What have others been told about pregnancy post melanoma diagnosis?

Forums General Melanoma Community What have others been told about pregnancy post melanoma diagnosis?

  • Post
    Leigh
    Participant

      Hi there,

      Hi there,

      I know this has been mentioned before but it seems most of the threads end up with different conclusions depending on who is responding so I thought I would ask again.  There seems to be a huge gap between different doctors recommendations which is very scary when facing a disease like melanoma.  I would really appreciate it if you might comment on advice you have been given and what stage you were/age at the time.  Also if you did fall pregnant what the outcome was (although I know that is just anecdotal evidence at the end of the day it is encouraging to hear).

      It feels selfish to write about this here when so many people are struggling so much with this disease, but the prospect of worsening your prognosis with pregnancy is frightening.  Made more so by the disparity in opinions within the medical fraternity.  I'm not sure if this is clinical bias, or perhaps lack of up to date knowledge that drives this.  From my reading, Marcia Driscoll's most recent 2010 review of the data suggests no correlation between pregnancy and melanoma/hormone use such as oral contraceptives/HRT and melanoma etc.  I am reassured when I read the article but I know some researchers get a bee in their bonnet about things and perhaps she is in the group favouring pregnancy. I recall lots of comments on this website, some women who have died following pregnancy with young children left behind.  I'm not sure of their stage when they fell pregnant but I know some have been convinced progression of their disease was related to pregnancy/IVF.

      My situation is that I am 37 and have two beautiful children.  I do not want to leave them without a mother and would not want to take a risk with that.  Similarly I do not want to not get pregnant if there is no real increased risk of recurrence as per this article and some advice I have received.  We have wanted a large family of 4 children and time is running out for that dream so it is decision time.  2 years ago I had a Stage 1 melanoma removed which grew during pregnancy.  It was Stage 1, no ulc, <1 mitosis, 0.83mm, Clarkes IV, neg SLNB.  I saw three doctors before it was removed and only then because it was "bothering me", it was itchy. 

      I have consulted various people – two dermatologists told me with the latest literature "no worries", dont "not get pregnant" because of the melanoma.  A surgeon (melanoma specialist) vaguely said, well if you wait 2 years you should be right.  More recently a Prof of Surg (melanoma specialist) has  said that if I fell pregnant, and if I were to recur, pregnancy would bring this forward.  (this was not borne out by my reading of Marcia Driscoll's review). 

      This is very rambly and if you have managed to get this far you must be interested in pregnancy and melanoma.  I would really appreciate it if you would share the advice you have been given along with your age and stage of disease to see if there is any real consensus.  I am not sure if this truly does remain controversial or if it truly is reasonable just to go ahead with no real increase in risk (as per my reading of Marcia Driscolls review).

       

      Melanoma tends to bring out the anxiety in me and I feel flustered just writing this and trying to get my thoughts together on the topic.  Hope this makes sense to you and thank you for reading.

       

       

    Viewing 53 reply threads
    • Replies
        JC
        Participant

          There are not any studies indicating a connection between pregnancy (hormones) and melanoma. But young women get pregnant and young women get melanoma. I've heard people being told to wait two years as that is the probable time for recurrence. And you dont' want to deal with recurrence and pregnancy at the same time.  So a decent waiting time is ideal. And unfortunately the clear SLNB is not a 100% guarantee that cells could still be in the blood stream.

          Melanoma specialists from leading cancer centers in the U.S. have different opinions.  Some say not to wait at all and that there is no connection and others say that there is not enough research to know for sure whether or not the state of the immune system during pregnancy could lead to something.  It's confusing.

          Based on research there's no conclusive evidence.  Immune system isn't the question usually, but presence of growth hormones and other hormonal influences of pregnancy. A large study of 800+ women showed very minimal effect of hormones on melanoma. But maybe good to give it two years.

            Leigh
            Participant

              Thanks so much for your reply.  I would really like to look at any publications/reviews/literature , would you be able to give me the names of the specialists at the leading cancer centres that feel there isnt enough research to know for sure whether pregnancy would lead to recurrance?  It seems the majoriy of the reviews/literature I have looked at are more of the opinion that there is no connection so being able to read others might be helpful with understanding the risk in the face of differing opinions.  Also a reference for the study of 800+ women?

              Leigh
              Participant

                Thanks so much for your reply.  I would really like to look at any publications/reviews/literature , would you be able to give me the names of the specialists at the leading cancer centres that feel there isnt enough research to know for sure whether pregnancy would lead to recurrance?  It seems the majoriy of the reviews/literature I have looked at are more of the opinion that there is no connection so being able to read others might be helpful with understanding the risk in the face of differing opinions.  Also a reference for the study of 800+ women?

                Leigh
                Participant

                  Thanks so much for your reply.  I would really like to look at any publications/reviews/literature , would you be able to give me the names of the specialists at the leading cancer centres that feel there isnt enough research to know for sure whether pregnancy would lead to recurrance?  It seems the majoriy of the reviews/literature I have looked at are more of the opinion that there is no connection so being able to read others might be helpful with understanding the risk in the face of differing opinions.  Also a reference for the study of 800+ women?

                  anicoleb47
                  Participant

                    I'm a bit late to this post, but I am currently researching this topic. I am 22 years old. At the age of 20, the Easter before my 21st birthday (in Oct), I was diagnosed with stage 3A. Shortly after my 21st birthday, I found out I was pregnant – very unplanned. But I was going to embrace the blessing God bestowed upon me. So fast forward to now, my baby is 4 months old. After delivery, we sent my placenta to the lab to check for any traces of the disease. All was well. On Friday, 3 days from now, I will have my first full body scans since before I was pregnant. Nervous but hopeful. I'll share the results this weekend; hopefully it will encourage others to not let cancer dictate the rest of their lives. 

                    anicoleb47
                    Participant

                      I'm a bit late to this post, but I am currently researching this topic. I am 22 years old. At the age of 20, the Easter before my 21st birthday (in Oct), I was diagnosed with stage 3A. Shortly after my 21st birthday, I found out I was pregnant – very unplanned. But I was going to embrace the blessing God bestowed upon me. So fast forward to now, my baby is 4 months old. After delivery, we sent my placenta to the lab to check for any traces of the disease. All was well. On Friday, 3 days from now, I will have my first full body scans since before I was pregnant. Nervous but hopeful. I'll share the results this weekend; hopefully it will encourage others to not let cancer dictate the rest of their lives. 

                      anicoleb47
                      Participant

                        I'm a bit late to this post, but I am currently researching this topic. I am 22 years old. At the age of 20, the Easter before my 21st birthday (in Oct), I was diagnosed with stage 3A. Shortly after my 21st birthday, I found out I was pregnant – very unplanned. But I was going to embrace the blessing God bestowed upon me. So fast forward to now, my baby is 4 months old. After delivery, we sent my placenta to the lab to check for any traces of the disease. All was well. On Friday, 3 days from now, I will have my first full body scans since before I was pregnant. Nervous but hopeful. I'll share the results this weekend; hopefully it will encourage others to not let cancer dictate the rest of their lives. 

                      JC
                      Participant

                        There are not any studies indicating a connection between pregnancy (hormones) and melanoma. But young women get pregnant and young women get melanoma. I've heard people being told to wait two years as that is the probable time for recurrence. And you dont' want to deal with recurrence and pregnancy at the same time.  So a decent waiting time is ideal. And unfortunately the clear SLNB is not a 100% guarantee that cells could still be in the blood stream.

                        Melanoma specialists from leading cancer centers in the U.S. have different opinions.  Some say not to wait at all and that there is no connection and others say that there is not enough research to know for sure whether or not the state of the immune system during pregnancy could lead to something.  It's confusing.

                        Based on research there's no conclusive evidence.  Immune system isn't the question usually, but presence of growth hormones and other hormonal influences of pregnancy. A large study of 800+ women showed very minimal effect of hormones on melanoma. But maybe good to give it two years.

                        JC
                        Participant

                          There are not any studies indicating a connection between pregnancy (hormones) and melanoma. But young women get pregnant and young women get melanoma. I've heard people being told to wait two years as that is the probable time for recurrence. And you dont' want to deal with recurrence and pregnancy at the same time.  So a decent waiting time is ideal. And unfortunately the clear SLNB is not a 100% guarantee that cells could still be in the blood stream.

                          Melanoma specialists from leading cancer centers in the U.S. have different opinions.  Some say not to wait at all and that there is no connection and others say that there is not enough research to know for sure whether or not the state of the immune system during pregnancy could lead to something.  It's confusing.

                          Based on research there's no conclusive evidence.  Immune system isn't the question usually, but presence of growth hormones and other hormonal influences of pregnancy. A large study of 800+ women showed very minimal effect of hormones on melanoma. But maybe good to give it two years.

                          jmmm
                          Participant
                            This doesn’t exactly answer the medical part of your question (and is obviously different), but think about the emotional part of it all. my husband was diagnosed at 24 with stage 1 melanoma. We opted not to let it change our lives…We had the 3 children we wanted and did what we wanted without any cancer worries. Fast forward 14 years and he unfortunately progressed to stage 4 at age 37 (at diagnosis, our kids were 7, 8, and 10). Fortunately, due to all the new treatments, he is still fighting and is alive 2 years after diagnosis, plus he’s NED!

                            Even now, we rarely let his cancer define what we choose to do. (we’re the crazy family who went to Disneyworld 7 weeks after his craniotomy and had a wonderful time:)) If we had made decisions out of fear 14 years ago, we wouldn’t have our 3 beautiful boys. We would have missed out on so many memories. We know at this point, statistics are not in his favor, and most likely he won’t get to see the boys grow up. But, would I change what we did…absolutely not! Life has no guarantees…whether you have a cancer diagnosis or not. We used to joke that you could get hit by a bus crossing the street (cancer or not). So, live your life to it’s fullest. Try to make educated choices, but don’t make those choices out of fear.

                            Obviously we are in a very different position, and this doesn’t really answer your question of whether pregnancy will cause the melanoma to come back, but just something to think about.

                            jmmm
                            Participant
                              This doesn’t exactly answer the medical part of your question (and is obviously different), but think about the emotional part of it all. my husband was diagnosed at 24 with stage 1 melanoma. We opted not to let it change our lives…We had the 3 children we wanted and did what we wanted without any cancer worries. Fast forward 14 years and he unfortunately progressed to stage 4 at age 37 (at diagnosis, our kids were 7, 8, and 10). Fortunately, due to all the new treatments, he is still fighting and is alive 2 years after diagnosis, plus he’s NED!

                              Even now, we rarely let his cancer define what we choose to do. (we’re the crazy family who went to Disneyworld 7 weeks after his craniotomy and had a wonderful time:)) If we had made decisions out of fear 14 years ago, we wouldn’t have our 3 beautiful boys. We would have missed out on so many memories. We know at this point, statistics are not in his favor, and most likely he won’t get to see the boys grow up. But, would I change what we did…absolutely not! Life has no guarantees…whether you have a cancer diagnosis or not. We used to joke that you could get hit by a bus crossing the street (cancer or not). So, live your life to it’s fullest. Try to make educated choices, but don’t make those choices out of fear.

                              Obviously we are in a very different position, and this doesn’t really answer your question of whether pregnancy will cause the melanoma to come back, but just something to think about.

                              jmmm
                              Participant
                                This doesn’t exactly answer the medical part of your question (and is obviously different), but think about the emotional part of it all. my husband was diagnosed at 24 with stage 1 melanoma. We opted not to let it change our lives…We had the 3 children we wanted and did what we wanted without any cancer worries. Fast forward 14 years and he unfortunately progressed to stage 4 at age 37 (at diagnosis, our kids were 7, 8, and 10). Fortunately, due to all the new treatments, he is still fighting and is alive 2 years after diagnosis, plus he’s NED!

                                Even now, we rarely let his cancer define what we choose to do. (we’re the crazy family who went to Disneyworld 7 weeks after his craniotomy and had a wonderful time:)) If we had made decisions out of fear 14 years ago, we wouldn’t have our 3 beautiful boys. We would have missed out on so many memories. We know at this point, statistics are not in his favor, and most likely he won’t get to see the boys grow up. But, would I change what we did…absolutely not! Life has no guarantees…whether you have a cancer diagnosis or not. We used to joke that you could get hit by a bus crossing the street (cancer or not). So, live your life to it’s fullest. Try to make educated choices, but don’t make those choices out of fear.

                                Obviously we are in a very different position, and this doesn’t really answer your question of whether pregnancy will cause the melanoma to come back, but just something to think about.

                                Amanda78
                                Participant

                                   

                                  Hi,

                                  This is a subject which gives me much pain as well. I'm 34 recently married and am stage 1B. Mine was a shave biopsy which revealed 1.45  mm , 3 mitoses, no ulceration, melanoma on my upper limb. While my SLNB and WLE were clear with no further melanoma found  – my oncologist told me there is no good evidence to support that there is or isn't a link for patients with a diagnosis of melanoma to develop metastatic melanoma as a result of pregnancy – no RCT. Also, the evidence from the retrospective trial was not collected with an entirely similiar patient popoulations (many with no mitoses, no vertical growth etc) which is an entirely different risk level that stage 1 folks with these indicators. Therefore, she advocated that I consider that anyone with vertical growth phase (ME) has the potential to develop metastatic melanoma often with a late dormancy phase. My oncologist told me there is enough case report and anecdotal evidence to solicite some quasi connection with pregnancy and development of metastatic melanoma. I met a young lady who had a .34 mm no ulceration on her neck who was doing fine for 5 years- and than 6 months after delivering her daughter was diagnosed as Stage 4. She is on Zelboraf and her oncologist mentioned she has had 10 such cases in her practice. Let's face it melanoma is a immune system driven cancer, the immune system is effected by pregnancy. We encourage more blood vessels in pregnancy which means more transport is possible. Since we do not know who is harbouring a few rogue cells which may be negatively affected by a pregnancy should we not proceed with extreme caution? This was her suggestion. I am now living in Switzerland and follow up here is with a Derm. He says go ahead get pregnant! Now I have to decide who I trust more – I believe the oncologist may have more knowledge on this subject. Remember it can take years to scientifically prove a connection and honestly we all wouldnt be receiving different medical opinions if there was absolutely no doubt on the subject of pregnancy. This makes me sooo sad but I really am blessed to not be dealing with satge 3 or worse right now. You seem to have many more factors in your favor with a low or zero mitosis and no VGP – therefore I believe you are in a much better category. God bless.

                                  Amanda78
                                  Participant

                                     

                                    Hi,

                                    This is a subject which gives me much pain as well. I'm 34 recently married and am stage 1B. Mine was a shave biopsy which revealed 1.45  mm , 3 mitoses, no ulceration, melanoma on my upper limb. While my SLNB and WLE were clear with no further melanoma found  – my oncologist told me there is no good evidence to support that there is or isn't a link for patients with a diagnosis of melanoma to develop metastatic melanoma as a result of pregnancy – no RCT. Also, the evidence from the retrospective trial was not collected with an entirely similiar patient popoulations (many with no mitoses, no vertical growth etc) which is an entirely different risk level that stage 1 folks with these indicators. Therefore, she advocated that I consider that anyone with vertical growth phase (ME) has the potential to develop metastatic melanoma often with a late dormancy phase. My oncologist told me there is enough case report and anecdotal evidence to solicite some quasi connection with pregnancy and development of metastatic melanoma. I met a young lady who had a .34 mm no ulceration on her neck who was doing fine for 5 years- and than 6 months after delivering her daughter was diagnosed as Stage 4. She is on Zelboraf and her oncologist mentioned she has had 10 such cases in her practice. Let's face it melanoma is a immune system driven cancer, the immune system is effected by pregnancy. We encourage more blood vessels in pregnancy which means more transport is possible. Since we do not know who is harbouring a few rogue cells which may be negatively affected by a pregnancy should we not proceed with extreme caution? This was her suggestion. I am now living in Switzerland and follow up here is with a Derm. He says go ahead get pregnant! Now I have to decide who I trust more – I believe the oncologist may have more knowledge on this subject. Remember it can take years to scientifically prove a connection and honestly we all wouldnt be receiving different medical opinions if there was absolutely no doubt on the subject of pregnancy. This makes me sooo sad but I really am blessed to not be dealing with satge 3 or worse right now. You seem to have many more factors in your favor with a low or zero mitosis and no VGP – therefore I believe you are in a much better category. God bless.

                                      Leigh
                                      Participant

                                        Thanks for such an informative reply.  There will never be an RCT, but it is interesting to hear that the retrospective trial (not sure which one that is) didn't have similar patient populations.  My pathology did show vertical growth phase which I had not considered.  I did not know there was a higher potneital for development of melanoma with late dormancy.  Ten cases of women at Stage 1 who have gone to stage 4 with pregnancy in your oncologists practice alone – is that true? Is it a specific practice for pregnant women with melanoma leading to such a concentration?  If so that is enough evidence for me not to get pregnant despite what the study suggests.  Your comments on the Vertical Growth Phase worry me and make me reconsider.  I had considered surrogacy but there are a myriad of issues with that of course as well.  Thanks so much for your reply. 

                                        Leigh
                                        Participant

                                          Thanks for such an informative reply.  There will never be an RCT, but it is interesting to hear that the retrospective trial (not sure which one that is) didn't have similar patient populations.  My pathology did show vertical growth phase which I had not considered.  I did not know there was a higher potneital for development of melanoma with late dormancy.  Ten cases of women at Stage 1 who have gone to stage 4 with pregnancy in your oncologists practice alone – is that true? Is it a specific practice for pregnant women with melanoma leading to such a concentration?  If so that is enough evidence for me not to get pregnant despite what the study suggests.  Your comments on the Vertical Growth Phase worry me and make me reconsider.  I had considered surrogacy but there are a myriad of issues with that of course as well.  Thanks so much for your reply. 

                                          Leigh
                                          Participant

                                            Thanks for such an informative reply.  There will never be an RCT, but it is interesting to hear that the retrospective trial (not sure which one that is) didn't have similar patient populations.  My pathology did show vertical growth phase which I had not considered.  I did not know there was a higher potneital for development of melanoma with late dormancy.  Ten cases of women at Stage 1 who have gone to stage 4 with pregnancy in your oncologists practice alone – is that true? Is it a specific practice for pregnant women with melanoma leading to such a concentration?  If so that is enough evidence for me not to get pregnant despite what the study suggests.  Your comments on the Vertical Growth Phase worry me and make me reconsider.  I had considered surrogacy but there are a myriad of issues with that of course as well.  Thanks so much for your reply. 

                                          Amanda78
                                          Participant

                                             

                                            Hi,

                                            This is a subject which gives me much pain as well. I'm 34 recently married and am stage 1B. Mine was a shave biopsy which revealed 1.45  mm , 3 mitoses, no ulceration, melanoma on my upper limb. While my SLNB and WLE were clear with no further melanoma found  – my oncologist told me there is no good evidence to support that there is or isn't a link for patients with a diagnosis of melanoma to develop metastatic melanoma as a result of pregnancy – no RCT. Also, the evidence from the retrospective trial was not collected with an entirely similiar patient popoulations (many with no mitoses, no vertical growth etc) which is an entirely different risk level that stage 1 folks with these indicators. Therefore, she advocated that I consider that anyone with vertical growth phase (ME) has the potential to develop metastatic melanoma often with a late dormancy phase. My oncologist told me there is enough case report and anecdotal evidence to solicite some quasi connection with pregnancy and development of metastatic melanoma. I met a young lady who had a .34 mm no ulceration on her neck who was doing fine for 5 years- and than 6 months after delivering her daughter was diagnosed as Stage 4. She is on Zelboraf and her oncologist mentioned she has had 10 such cases in her practice. Let's face it melanoma is a immune system driven cancer, the immune system is effected by pregnancy. We encourage more blood vessels in pregnancy which means more transport is possible. Since we do not know who is harbouring a few rogue cells which may be negatively affected by a pregnancy should we not proceed with extreme caution? This was her suggestion. I am now living in Switzerland and follow up here is with a Derm. He says go ahead get pregnant! Now I have to decide who I trust more – I believe the oncologist may have more knowledge on this subject. Remember it can take years to scientifically prove a connection and honestly we all wouldnt be receiving different medical opinions if there was absolutely no doubt on the subject of pregnancy. This makes me sooo sad but I really am blessed to not be dealing with satge 3 or worse right now. You seem to have many more factors in your favor with a low or zero mitosis and no VGP – therefore I believe you are in a much better category. God bless.

                                            JC
                                            Participant

                                              I guess I don't understand the notion of dormancy. . do all people with anything other than in-situ. . so even early/thin stage I people. . .inevitably have these rogue dormant cells somewhere in the body that are waiting for the immune system to be compromised?  or, is it the case that sometimes the WLE surgery is curative and has cleared out all the cancer and no cells broke off anywhere?

                                              JC
                                              Participant

                                                I guess I don't understand the notion of dormancy. . do all people with anything other than in-situ. . so even early/thin stage I people. . .inevitably have these rogue dormant cells somewhere in the body that are waiting for the immune system to be compromised?  or, is it the case that sometimes the WLE surgery is curative and has cleared out all the cancer and no cells broke off anywhere?

                                                JC
                                                Participant

                                                  I guess I don't understand the notion of dormancy. . do all people with anything other than in-situ. . so even early/thin stage I people. . .inevitably have these rogue dormant cells somewhere in the body that are waiting for the immune system to be compromised?  or, is it the case that sometimes the WLE surgery is curative and has cleared out all the cancer and no cells broke off anywhere?

                                                  JC
                                                  Participant

                                                    It seems like there are a few options after WLE/SLN: Either that cleared your body of all the cancer cells or some rogue cells went astray either via the bloodstream or the lymphatic system (to different node than sentinel node, or hadn't reached the node yet at the time of SLN, etc..), and if that happens – you may never know it if your body seeks and destroys those cells or if they are dormant (but of course could become a problem many years later). But, then I've also heard that a lesion that is shallow depth or thickness is highly unlikely (and nearly biologically impossible) the ability to spread. So, I don't know what to think, it seems very complicated.

                                                      Amanda78
                                                      Participant

                                                         

                                                        While a shallow depth is still the best prognostic factor when it comes to melanoma, the reality is that once the tumor enters Vertical Growth Phase it has the biological capacity to metastisize according to my oncologist at princess margaret hospital. While it is unlikely, it is defintely a real possibility. If you look at some of the best data out of Australia, there are up to 20% of stage 1B patients who progress after a mean follow up time of 10 years. That's way to many for my liking and my oncologist said this cancer simply behaves VERY differently than other cancers so the looming question remains will pregnancy pose a potential "perfect storm" for progression and advancement. Of course M.D may say there is no clear evidence ….however we have a good hypothesis as to why there may be some prudent increase for concern and until they research melanoma and pregnancy with a greater degree of Grade A evidence I truly feel we must respect that we don't really know for sure what level of risk we are at as women in stage 1 vs. 1b and stage 2 etc.

                                                        Amanda78
                                                        Participant

                                                           

                                                          While a shallow depth is still the best prognostic factor when it comes to melanoma, the reality is that once the tumor enters Vertical Growth Phase it has the biological capacity to metastisize according to my oncologist at princess margaret hospital. While it is unlikely, it is defintely a real possibility. If you look at some of the best data out of Australia, there are up to 20% of stage 1B patients who progress after a mean follow up time of 10 years. That's way to many for my liking and my oncologist said this cancer simply behaves VERY differently than other cancers so the looming question remains will pregnancy pose a potential "perfect storm" for progression and advancement. Of course M.D may say there is no clear evidence ….however we have a good hypothesis as to why there may be some prudent increase for concern and until they research melanoma and pregnancy with a greater degree of Grade A evidence I truly feel we must respect that we don't really know for sure what level of risk we are at as women in stage 1 vs. 1b and stage 2 etc.

                                                          Amanda78
                                                          Participant

                                                             

                                                            While a shallow depth is still the best prognostic factor when it comes to melanoma, the reality is that once the tumor enters Vertical Growth Phase it has the biological capacity to metastisize according to my oncologist at princess margaret hospital. While it is unlikely, it is defintely a real possibility. If you look at some of the best data out of Australia, there are up to 20% of stage 1B patients who progress after a mean follow up time of 10 years. That's way to many for my liking and my oncologist said this cancer simply behaves VERY differently than other cancers so the looming question remains will pregnancy pose a potential "perfect storm" for progression and advancement. Of course M.D may say there is no clear evidence ….however we have a good hypothesis as to why there may be some prudent increase for concern and until they research melanoma and pregnancy with a greater degree of Grade A evidence I truly feel we must respect that we don't really know for sure what level of risk we are at as women in stage 1 vs. 1b and stage 2 etc.

                                                          JC
                                                          Participant

                                                            It seems like there are a few options after WLE/SLN: Either that cleared your body of all the cancer cells or some rogue cells went astray either via the bloodstream or the lymphatic system (to different node than sentinel node, or hadn't reached the node yet at the time of SLN, etc..), and if that happens – you may never know it if your body seeks and destroys those cells or if they are dormant (but of course could become a problem many years later). But, then I've also heard that a lesion that is shallow depth or thickness is highly unlikely (and nearly biologically impossible) the ability to spread. So, I don't know what to think, it seems very complicated.

                                                            JC
                                                            Participant

                                                              It seems like there are a few options after WLE/SLN: Either that cleared your body of all the cancer cells or some rogue cells went astray either via the bloodstream or the lymphatic system (to different node than sentinel node, or hadn't reached the node yet at the time of SLN, etc..), and if that happens – you may never know it if your body seeks and destroys those cells or if they are dormant (but of course could become a problem many years later). But, then I've also heard that a lesion that is shallow depth or thickness is highly unlikely (and nearly biologically impossible) the ability to spread. So, I don't know what to think, it seems very complicated.

                                                              JC
                                                              Participant

                                                                also from Australia was the Queensland study: 

                                                                Results Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20year survival was 96%.

                                                                JC
                                                                Participant

                                                                  also from Australia was the Queensland study: 

                                                                  Results Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20year survival was 96%.

                                                                    Amanda78
                                                                    Participant

                                                                       

                                                                      That is for melanomas 0.75 mm or less – neither myself or Leigh are in that category. The chart my oncologist showed me this summer was follow-up from a select group of real stage 1 and 1B patients who had undergone SLNB and WLE. Real meaning they had a clear SLNB and WLE.  Also, the stat anonymous  listed is from a very old subset o patients – the data my oncologist showed my was not from the 70s but from mid 90s to 2010. This is important because in the 70s they had no way of knowing who was pathologically a stage 3 vs 1 as the SLNB did not come into practice until the early 90s. The oncologist explained that 20% had recurrence which dramatically affected survival rate. Again, this is what the oncologist at princess margaret told me when I questioned her on what is known for stage 1B. My story is a sort of strange turn of events. I actually worked for Merck at the time and knew the oncologist. I wanted to know what was the "real deal" not the run-around garble we sometimes encounter as patients. Sorry, I do not want to data drop or go back and forth but this is my experience.

                                                                      Amanda78
                                                                      Participant

                                                                         

                                                                        That is for melanomas 0.75 mm or less – neither myself or Leigh are in that category. The chart my oncologist showed me this summer was follow-up from a select group of real stage 1 and 1B patients who had undergone SLNB and WLE. Real meaning they had a clear SLNB and WLE.  Also, the stat anonymous  listed is from a very old subset o patients – the data my oncologist showed my was not from the 70s but from mid 90s to 2010. This is important because in the 70s they had no way of knowing who was pathologically a stage 3 vs 1 as the SLNB did not come into practice until the early 90s. The oncologist explained that 20% had recurrence which dramatically affected survival rate. Again, this is what the oncologist at princess margaret told me when I questioned her on what is known for stage 1B. My story is a sort of strange turn of events. I actually worked for Merck at the time and knew the oncologist. I wanted to know what was the "real deal" not the run-around garble we sometimes encounter as patients. Sorry, I do not want to data drop or go back and forth but this is my experience.

                                                                        Leigh
                                                                        Participant

                                                                          HI amanda,

                                                                          dont apologise, for data dropping…that is exactly what I am interested in to make an informed decision.  Could you give the author name or study title from the one out of australia for stage 1 "real cases' with neg SLNB as I was not aware that was available.  I have only heard of/seen data for large groups of patients who without slnb information.  I would be very very interested in seeing the outcomes for stage 1a in that study.  I think that is why my prognosis has worsened since coming to qld, they are obviously referring to that study.

                                                                          Leigh
                                                                          Participant

                                                                            HI amanda,

                                                                            dont apologise, for data dropping…that is exactly what I am interested in to make an informed decision.  Could you give the author name or study title from the one out of australia for stage 1 "real cases' with neg SLNB as I was not aware that was available.  I have only heard of/seen data for large groups of patients who without slnb information.  I would be very very interested in seeing the outcomes for stage 1a in that study.  I think that is why my prognosis has worsened since coming to qld, they are obviously referring to that study.

                                                                            Leigh
                                                                            Participant

                                                                              HI amanda,

                                                                              dont apologise, for data dropping…that is exactly what I am interested in to make an informed decision.  Could you give the author name or study title from the one out of australia for stage 1 "real cases' with neg SLNB as I was not aware that was available.  I have only heard of/seen data for large groups of patients who without slnb information.  I would be very very interested in seeing the outcomes for stage 1a in that study.  I think that is why my prognosis has worsened since coming to qld, they are obviously referring to that study.

                                                                              Amanda78
                                                                              Participant

                                                                                 

                                                                                That is for melanomas 0.75 mm or less – neither myself or Leigh are in that category. The chart my oncologist showed me this summer was follow-up from a select group of real stage 1 and 1B patients who had undergone SLNB and WLE. Real meaning they had a clear SLNB and WLE.  Also, the stat anonymous  listed is from a very old subset o patients – the data my oncologist showed my was not from the 70s but from mid 90s to 2010. This is important because in the 70s they had no way of knowing who was pathologically a stage 3 vs 1 as the SLNB did not come into practice until the early 90s. The oncologist explained that 20% had recurrence which dramatically affected survival rate. Again, this is what the oncologist at princess margaret told me when I questioned her on what is known for stage 1B. My story is a sort of strange turn of events. I actually worked for Merck at the time and knew the oncologist. I wanted to know what was the "real deal" not the run-around garble we sometimes encounter as patients. Sorry, I do not want to data drop or go back and forth but this is my experience.

                                                                              JC
                                                                              Participant

                                                                                also from Australia was the Queensland study: 

                                                                                Results Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20year survival was 96%.

                                                                                Janner
                                                                                Participant

                                                                                  I have a few articles on my website:  http://www.melanomaresources.info/pregnancy.html

                                                                                  I haven't updated this portion in ages so I'm sure there is newer stuff.  The problem is, no one wants to do studies on pregnant women, so you will never get any accurate info.  You can only do retrospective studies and they can never be as conclusive as other studies done in real time.  10 years ago, I did a bunch of research.  I had just had my third primary removed (.88mm so similar depth).  I wanted a child and was getting to "that age".  I wasn't able to wait the recommended two years because the clock was ticking.  After talking to several docs and doing my research, I came to the conclusion that young women get melanoma and young women get pregnant, but they aren't necessarily related.  There was no conclusive evidence that pregnancy would be a risk.  Like the other poster said, I chose to live my life how I wanted to live it and not allow melanoma to dictate.  Unfortunately, I was unable to conceive so can't comment on whether or not melanoma would have been an issue.  My doc was willing to monitor me closely and that was my plan.  I'm still stage IB 11 years later and 21 years out from my first primary. 

                                                                                  Best wishes,

                                                                                  Janner

                                                                                  Janner
                                                                                  Participant

                                                                                    I have a few articles on my website:  http://www.melanomaresources.info/pregnancy.html

                                                                                    I haven't updated this portion in ages so I'm sure there is newer stuff.  The problem is, no one wants to do studies on pregnant women, so you will never get any accurate info.  You can only do retrospective studies and they can never be as conclusive as other studies done in real time.  10 years ago, I did a bunch of research.  I had just had my third primary removed (.88mm so similar depth).  I wanted a child and was getting to "that age".  I wasn't able to wait the recommended two years because the clock was ticking.  After talking to several docs and doing my research, I came to the conclusion that young women get melanoma and young women get pregnant, but they aren't necessarily related.  There was no conclusive evidence that pregnancy would be a risk.  Like the other poster said, I chose to live my life how I wanted to live it and not allow melanoma to dictate.  Unfortunately, I was unable to conceive so can't comment on whether or not melanoma would have been an issue.  My doc was willing to monitor me closely and that was my plan.  I'm still stage IB 11 years later and 21 years out from my first primary. 

                                                                                    Best wishes,

                                                                                    Janner

                                                                                      POW
                                                                                      Participant

                                                                                        I can see from the above posts why this is such a complex and confusing situation. Nobody knows for sure whether YOUR melanoma will recur and nobody knows for sure if pregnancy will stimulate the melanoma or not. Whichever way you decide– to have another child or not– you will not be wrong or stupid. 

                                                                                        But before you make your decision, you might want to think about something more in your control– what will you and your husband do if you do have a recurrance? What will your life be like and what will your children's lives be like if Mommy is very sick for a long time? Will your husband be able to stop working to care for the children? Do you have a strong support system (like a nearby grandmother) who will be able to care for the children while you are going to frequent doctors' appointments and undergoing treatments? Is there anyone nearby who will help you with the housework or will you be able to hire some household help if needed? Will you be able to handle the financial burdens of a recurrance? How will you feel, and how will your children feel, if Mommy is unable to attend their school plays or soccer games? If you and your husband can honestly think about and consciously plan for how you will handle a recurrance should it happen, you will be performing a priceless service for each other and for your current children. You will also have a better sense about whether it will be wise to try for another child. 

                                                                                        POW
                                                                                        Participant

                                                                                          I can see from the above posts why this is such a complex and confusing situation. Nobody knows for sure whether YOUR melanoma will recur and nobody knows for sure if pregnancy will stimulate the melanoma or not. Whichever way you decide– to have another child or not– you will not be wrong or stupid. 

                                                                                          But before you make your decision, you might want to think about something more in your control– what will you and your husband do if you do have a recurrance? What will your life be like and what will your children's lives be like if Mommy is very sick for a long time? Will your husband be able to stop working to care for the children? Do you have a strong support system (like a nearby grandmother) who will be able to care for the children while you are going to frequent doctors' appointments and undergoing treatments? Is there anyone nearby who will help you with the housework or will you be able to hire some household help if needed? Will you be able to handle the financial burdens of a recurrance? How will you feel, and how will your children feel, if Mommy is unable to attend their school plays or soccer games? If you and your husband can honestly think about and consciously plan for how you will handle a recurrance should it happen, you will be performing a priceless service for each other and for your current children. You will also have a better sense about whether it will be wise to try for another child. 

                                                                                          Leigh
                                                                                          Participant

                                                                                            Thanks POW. That is exactly what I am considering and had elected not to go ahead.  Then I read Marcia Driscoll's review which strongly  suggests there is no link and references huge numbers of articles which I haven't read or critiqued.  I read this review from 2010 and became quite excited that perhaps maybe I should just go ahead.  If there is no change in the risk of recurrence then I should continue with our life plans of a large family. 

                                                                                            My view is completely turned upside down with comments such as those from Amanda and I would not ever risk the possibility that my two wonderful children would grow up without me or have their mum have a serious illness.  I have even considered surrogacy to avoid risks to my health but obviously there are issues there too.  Here in Qld the laws state the birth mother is the legal mother until a court hearing to show surrogacy went ahead for a medical reason (which obviously is debatable given the differing opinions).  Add to that I dont think I know of a potential surrogate and all the ramifications around it, the decision to even go ahead with that is fraught with difficulty.  We have two lovely little girls now so perhaps we just leave well enough alone.  I am sad we do not have a large family but given the situation others are in and my own scares with recurrance I know I am so blessed to be here.

                                                                                            Leigh
                                                                                            Participant

                                                                                              Thanks POW. That is exactly what I am considering and had elected not to go ahead.  Then I read Marcia Driscoll's review which strongly  suggests there is no link and references huge numbers of articles which I haven't read or critiqued.  I read this review from 2010 and became quite excited that perhaps maybe I should just go ahead.  If there is no change in the risk of recurrence then I should continue with our life plans of a large family. 

                                                                                              My view is completely turned upside down with comments such as those from Amanda and I would not ever risk the possibility that my two wonderful children would grow up without me or have their mum have a serious illness.  I have even considered surrogacy to avoid risks to my health but obviously there are issues there too.  Here in Qld the laws state the birth mother is the legal mother until a court hearing to show surrogacy went ahead for a medical reason (which obviously is debatable given the differing opinions).  Add to that I dont think I know of a potential surrogate and all the ramifications around it, the decision to even go ahead with that is fraught with difficulty.  We have two lovely little girls now so perhaps we just leave well enough alone.  I am sad we do not have a large family but given the situation others are in and my own scares with recurrance I know I am so blessed to be here.

                                                                                              Leigh
                                                                                              Participant

                                                                                                Thanks POW. That is exactly what I am considering and had elected not to go ahead.  Then I read Marcia Driscoll's review which strongly  suggests there is no link and references huge numbers of articles which I haven't read or critiqued.  I read this review from 2010 and became quite excited that perhaps maybe I should just go ahead.  If there is no change in the risk of recurrence then I should continue with our life plans of a large family. 

                                                                                                My view is completely turned upside down with comments such as those from Amanda and I would not ever risk the possibility that my two wonderful children would grow up without me or have their mum have a serious illness.  I have even considered surrogacy to avoid risks to my health but obviously there are issues there too.  Here in Qld the laws state the birth mother is the legal mother until a court hearing to show surrogacy went ahead for a medical reason (which obviously is debatable given the differing opinions).  Add to that I dont think I know of a potential surrogate and all the ramifications around it, the decision to even go ahead with that is fraught with difficulty.  We have two lovely little girls now so perhaps we just leave well enough alone.  I am sad we do not have a large family but given the situation others are in and my own scares with recurrance I know I am so blessed to be here.

                                                                                                POW
                                                                                                Participant

                                                                                                  I can see from the above posts why this is such a complex and confusing situation. Nobody knows for sure whether YOUR melanoma will recur and nobody knows for sure if pregnancy will stimulate the melanoma or not. Whichever way you decide– to have another child or not– you will not be wrong or stupid. 

                                                                                                  But before you make your decision, you might want to think about something more in your control– what will you and your husband do if you do have a recurrance? What will your life be like and what will your children's lives be like if Mommy is very sick for a long time? Will your husband be able to stop working to care for the children? Do you have a strong support system (like a nearby grandmother) who will be able to care for the children while you are going to frequent doctors' appointments and undergoing treatments? Is there anyone nearby who will help you with the housework or will you be able to hire some household help if needed? Will you be able to handle the financial burdens of a recurrance? How will you feel, and how will your children feel, if Mommy is unable to attend their school plays or soccer games? If you and your husband can honestly think about and consciously plan for how you will handle a recurrance should it happen, you will be performing a priceless service for each other and for your current children. You will also have a better sense about whether it will be wise to try for another child. 

                                                                                                Janner
                                                                                                Participant

                                                                                                  I have a few articles on my website:  http://www.melanomaresources.info/pregnancy.html

                                                                                                  I haven't updated this portion in ages so I'm sure there is newer stuff.  The problem is, no one wants to do studies on pregnant women, so you will never get any accurate info.  You can only do retrospective studies and they can never be as conclusive as other studies done in real time.  10 years ago, I did a bunch of research.  I had just had my third primary removed (.88mm so similar depth).  I wanted a child and was getting to "that age".  I wasn't able to wait the recommended two years because the clock was ticking.  After talking to several docs and doing my research, I came to the conclusion that young women get melanoma and young women get pregnant, but they aren't necessarily related.  There was no conclusive evidence that pregnancy would be a risk.  Like the other poster said, I chose to live my life how I wanted to live it and not allow melanoma to dictate.  Unfortunately, I was unable to conceive so can't comment on whether or not melanoma would have been an issue.  My doc was willing to monitor me closely and that was my plan.  I'm still stage IB 11 years later and 21 years out from my first primary. 

                                                                                                  Best wishes,

                                                                                                  Janner

                                                                                                  JC
                                                                                                  Participant

                                                                                                    i completely understand what POW is saying. . it's sound advice. . . but at the same time, it's a little bit like letting the melanoma, or the potential of further melanoma. . .be in control of your life and your choices

                                                                                                     

                                                                                                    very tough, not easy things to deal with

                                                                                                    JC
                                                                                                    Participant

                                                                                                      i completely understand what POW is saying. . it's sound advice. . . but at the same time, it's a little bit like letting the melanoma, or the potential of further melanoma. . .be in control of your life and your choices

                                                                                                       

                                                                                                      very tough, not easy things to deal with

                                                                                                      JC
                                                                                                      Participant

                                                                                                        i completely understand what POW is saying. . it's sound advice. . . but at the same time, it's a little bit like letting the melanoma, or the potential of further melanoma. . .be in control of your life and your choices

                                                                                                         

                                                                                                        very tough, not easy things to deal with

                                                                                                          Amanda78
                                                                                                          Participant

                                                                                                             

                                                                                                            This email trail provided above relates to very very low risk lesions – there is a lady with an in-situ and another with <0.75m. That is a different risk potential than someone like myself who is a 1B. We simply do not know as females how to accurately assess our risk potential – truly this is the crux of the problem. The quote below is what the Dr here in Switzerland gave me last month (I have moved here and am being followed at the premier site for melanoma care). Problem for me with this quote is the-in between stages are sort of somewhere in the middle in terms of true risk. I am not sure I can mentally handle having a recurrence/progression esp during or shortly after pregnancy. Leigh – you are truly blessed to have 2 daughters.

                                                                                                            There are no standard, defined guidelines for patients who wish to become pregnant after the diagnosis and treatment of melanoma, but the consensus is to recommend that women avoid pregnancy for two to five years after the diagnosis of high-risk melanoma, whether  or not the melanoma occurred during pregnancy,32 as most recurrences are diagnosed within this period. Those with < 0.5mm thick melanoma have a 1–3% risk of recurrence within five years, while those with > 4mm thick melanoma have a risk of recurrence of  up to 50% within two years. However, it is not completely predictable who will develop recurrent disease and each patient should be approached individually, with the patient ultimately making her own informed decision.33 

                                                                                                             

                                                                                                            Leigh
                                                                                                            Participant

                                                                                                              You are right amanda, there is no clear answer and the statement at the end of the swiss recommendations "the patient ultimately makes her own informed decision" is very difficult to do when often you are not clearly given all the information available, in fact it is extremely hard information to find.

                                                                                                              I read a couple of the papers you referred to along with others and I think my lesion was on the high risk end of recurrence due to Clarkes IV, vertical growth phase and it is over 0.75mm.

                                                                                                              That along with the fact that my first trip to the Doctor to mention it was just after I had a miscarriage, the second trip during my next pregnancy shortly afterward, and finally the final trip when I got it off 9 weeks postpartum. If I am completely honest with myself it did seem to grow and become problematic during pregnancy.

                                                                                                              Thank you all for your comments, as usual this forum has been such a wonderful source of support and information that I would never find elsewhere. Best wishes to everybody.  

                                                                                                              Leigh
                                                                                                              Participant

                                                                                                                You are right amanda, there is no clear answer and the statement at the end of the swiss recommendations "the patient ultimately makes her own informed decision" is very difficult to do when often you are not clearly given all the information available, in fact it is extremely hard information to find.

                                                                                                                I read a couple of the papers you referred to along with others and I think my lesion was on the high risk end of recurrence due to Clarkes IV, vertical growth phase and it is over 0.75mm.

                                                                                                                That along with the fact that my first trip to the Doctor to mention it was just after I had a miscarriage, the second trip during my next pregnancy shortly afterward, and finally the final trip when I got it off 9 weeks postpartum. If I am completely honest with myself it did seem to grow and become problematic during pregnancy.

                                                                                                                Thank you all for your comments, as usual this forum has been such a wonderful source of support and information that I would never find elsewhere. Best wishes to everybody.  

                                                                                                                Leigh
                                                                                                                Participant

                                                                                                                  You are right amanda, there is no clear answer and the statement at the end of the swiss recommendations "the patient ultimately makes her own informed decision" is very difficult to do when often you are not clearly given all the information available, in fact it is extremely hard information to find.

                                                                                                                  I read a couple of the papers you referred to along with others and I think my lesion was on the high risk end of recurrence due to Clarkes IV, vertical growth phase and it is over 0.75mm.

                                                                                                                  That along with the fact that my first trip to the Doctor to mention it was just after I had a miscarriage, the second trip during my next pregnancy shortly afterward, and finally the final trip when I got it off 9 weeks postpartum. If I am completely honest with myself it did seem to grow and become problematic during pregnancy.

                                                                                                                  Thank you all for your comments, as usual this forum has been such a wonderful source of support and information that I would never find elsewhere. Best wishes to everybody.  

                                                                                                                  Amanda78
                                                                                                                  Participant

                                                                                                                     

                                                                                                                    This email trail provided above relates to very very low risk lesions – there is a lady with an in-situ and another with <0.75m. That is a different risk potential than someone like myself who is a 1B. We simply do not know as females how to accurately assess our risk potential – truly this is the crux of the problem. The quote below is what the Dr here in Switzerland gave me last month (I have moved here and am being followed at the premier site for melanoma care). Problem for me with this quote is the-in between stages are sort of somewhere in the middle in terms of true risk. I am not sure I can mentally handle having a recurrence/progression esp during or shortly after pregnancy. Leigh – you are truly blessed to have 2 daughters.

                                                                                                                    There are no standard, defined guidelines for patients who wish to become pregnant after the diagnosis and treatment of melanoma, but the consensus is to recommend that women avoid pregnancy for two to five years after the diagnosis of high-risk melanoma, whether  or not the melanoma occurred during pregnancy,32 as most recurrences are diagnosed within this period. Those with < 0.5mm thick melanoma have a 1–3% risk of recurrence within five years, while those with > 4mm thick melanoma have a risk of recurrence of  up to 50% within two years. However, it is not completely predictable who will develop recurrent disease and each patient should be approached individually, with the patient ultimately making her own informed decision.33 

                                                                                                                     

                                                                                                                    Amanda78
                                                                                                                    Participant

                                                                                                                       

                                                                                                                      This email trail provided above relates to very very low risk lesions – there is a lady with an in-situ and another with <0.75m. That is a different risk potential than someone like myself who is a 1B. We simply do not know as females how to accurately assess our risk potential – truly this is the crux of the problem. The quote below is what the Dr here in Switzerland gave me last month (I have moved here and am being followed at the premier site for melanoma care). Problem for me with this quote is the-in between stages are sort of somewhere in the middle in terms of true risk. I am not sure I can mentally handle having a recurrence/progression esp during or shortly after pregnancy. Leigh – you are truly blessed to have 2 daughters.

                                                                                                                      There are no standard, defined guidelines for patients who wish to become pregnant after the diagnosis and treatment of melanoma, but the consensus is to recommend that women avoid pregnancy for two to five years after the diagnosis of high-risk melanoma, whether  or not the melanoma occurred during pregnancy,32 as most recurrences are diagnosed within this period. Those with < 0.5mm thick melanoma have a 1–3% risk of recurrence within five years, while those with > 4mm thick melanoma have a risk of recurrence of  up to 50% within two years. However, it is not completely predictable who will develop recurrent disease and each patient should be approached individually, with the patient ultimately making her own informed decision.33 

                                                                                                                       

                                                                                                                    AngelaM
                                                                                                                    Participant
                                                                                                                      Hi Leigh,
                                                                                                                      I see that there have been many responses to your topic already, but I thought I would tell you what I have been told.

                                                                                                                      Firstly, I had 3 primary melanomas in 2 years. 1 in-situ and 2 stage 1A’s. The first melanoma was in-situ and 3 months later I fell pregnant. The second melanoma grew during the third trimester and was removed shortly after the birth. The third melanoma appeared just before my son turned 1. At that point my oncologist and derm told me to wait 2 years if I wanted another child, which I do. I also read everything I could find and asked a thousand questions. My doctors said that pregnancy is an immunosuppressive state. That coupled with growth hormones and increased melanin production (like the ‘mask’ of pregnancy) could be a recipe for disaster. I think my greatest risk is more primaries more than anything else, but the worry in my case is that they appear overnight and don’t take months to grow like everyone else’s seem to.

                                                                                                                      I also live on the other side of the world to the US. We have a very high rate of melanoma here and the sun is blistering almost every day of the year. When I asked my oncologist about the research regarding pregnancy and melanoma and how it basically has found no link he got all flustered and said it’s not accurate.

                                                                                                                      You must make the best decision for you. If I were in your shoes I would honestly be happy with 2 daughters and concentrate on being their mother for as long as possible. Good luck with your decision!

                                                                                                                      AngelaM
                                                                                                                      Participant
                                                                                                                        Hi Leigh,
                                                                                                                        I see that there have been many responses to your topic already, but I thought I would tell you what I have been told.

                                                                                                                        Firstly, I had 3 primary melanomas in 2 years. 1 in-situ and 2 stage 1A’s. The first melanoma was in-situ and 3 months later I fell pregnant. The second melanoma grew during the third trimester and was removed shortly after the birth. The third melanoma appeared just before my son turned 1. At that point my oncologist and derm told me to wait 2 years if I wanted another child, which I do. I also read everything I could find and asked a thousand questions. My doctors said that pregnancy is an immunosuppressive state. That coupled with growth hormones and increased melanin production (like the ‘mask’ of pregnancy) could be a recipe for disaster. I think my greatest risk is more primaries more than anything else, but the worry in my case is that they appear overnight and don’t take months to grow like everyone else’s seem to.

                                                                                                                        I also live on the other side of the world to the US. We have a very high rate of melanoma here and the sun is blistering almost every day of the year. When I asked my oncologist about the research regarding pregnancy and melanoma and how it basically has found no link he got all flustered and said it’s not accurate.

                                                                                                                        You must make the best decision for you. If I were in your shoes I would honestly be happy with 2 daughters and concentrate on being their mother for as long as possible. Good luck with your decision!

                                                                                                                        AngelaM
                                                                                                                        Participant
                                                                                                                          Hi Leigh,
                                                                                                                          I see that there have been many responses to your topic already, but I thought I would tell you what I have been told.

                                                                                                                          Firstly, I had 3 primary melanomas in 2 years. 1 in-situ and 2 stage 1A’s. The first melanoma was in-situ and 3 months later I fell pregnant. The second melanoma grew during the third trimester and was removed shortly after the birth. The third melanoma appeared just before my son turned 1. At that point my oncologist and derm told me to wait 2 years if I wanted another child, which I do. I also read everything I could find and asked a thousand questions. My doctors said that pregnancy is an immunosuppressive state. That coupled with growth hormones and increased melanin production (like the ‘mask’ of pregnancy) could be a recipe for disaster. I think my greatest risk is more primaries more than anything else, but the worry in my case is that they appear overnight and don’t take months to grow like everyone else’s seem to.

                                                                                                                          I also live on the other side of the world to the US. We have a very high rate of melanoma here and the sun is blistering almost every day of the year. When I asked my oncologist about the research regarding pregnancy and melanoma and how it basically has found no link he got all flustered and said it’s not accurate.

                                                                                                                          You must make the best decision for you. If I were in your shoes I would honestly be happy with 2 daughters and concentrate on being their mother for as long as possible. Good luck with your decision!

                                                                                                                            Leigh
                                                                                                                            Participant

                                                                                                                              Thank you Angela for your resopnse also.  Especially the last paragraph.  You are right saying I should be happy with my two girls.  I had got excited and started planning for another baby, so I have been very disappointed, but ultimately I am very blessed to have my lovely wee children.  My husband just read this thread and upon finishing said clearly he does not think we should go ahead because of the risks.  So that is that.  I really appreciate everybodys input and it has truly helped us come to this decision which has been hanging around for a couple of years now.  Many thanks again for taking time to reply.

                                                                                                                              Leigh
                                                                                                                              Participant

                                                                                                                                Thank you Angela for your resopnse also.  Especially the last paragraph.  You are right saying I should be happy with my two girls.  I had got excited and started planning for another baby, so I have been very disappointed, but ultimately I am very blessed to have my lovely wee children.  My husband just read this thread and upon finishing said clearly he does not think we should go ahead because of the risks.  So that is that.  I really appreciate everybodys input and it has truly helped us come to this decision which has been hanging around for a couple of years now.  Many thanks again for taking time to reply.

                                                                                                                                Leigh
                                                                                                                                Participant

                                                                                                                                  Thank you Angela for your resopnse also.  Especially the last paragraph.  You are right saying I should be happy with my two girls.  I had got excited and started planning for another baby, so I have been very disappointed, but ultimately I am very blessed to have my lovely wee children.  My husband just read this thread and upon finishing said clearly he does not think we should go ahead because of the risks.  So that is that.  I really appreciate everybodys input and it has truly helped us come to this decision which has been hanging around for a couple of years now.  Many thanks again for taking time to reply.

                                                                                                                                Ranisa
                                                                                                                                Participant

                                                                                                                                  I was in your same situation.  I was thinking of getting pregnant….i had gone to the OB/GYN to get the go ahead and got it.  Within a few weeks I found out I was stage 1B.  My doctor told me no pregnancy for at least 2 years….went to a new derm and oncologist (melanoma specialist) and both gave me the go ahead.  I ended up pregnant 6 months after I was diagnoised.  It isn't for everyone but I knew it was right for me.  I KNEW…..

                                                                                                                                  Ranisa
                                                                                                                                  Participant

                                                                                                                                    I was in your same situation.  I was thinking of getting pregnant….i had gone to the OB/GYN to get the go ahead and got it.  Within a few weeks I found out I was stage 1B.  My doctor told me no pregnancy for at least 2 years….went to a new derm and oncologist (melanoma specialist) and both gave me the go ahead.  I ended up pregnant 6 months after I was diagnoised.  It isn't for everyone but I knew it was right for me.  I KNEW…..

                                                                                                                                    Ranisa
                                                                                                                                    Participant

                                                                                                                                      I was in your same situation.  I was thinking of getting pregnant….i had gone to the OB/GYN to get the go ahead and got it.  Within a few weeks I found out I was stage 1B.  My doctor told me no pregnancy for at least 2 years….went to a new derm and oncologist (melanoma specialist) and both gave me the go ahead.  I ended up pregnant 6 months after I was diagnoised.  It isn't for everyone but I knew it was right for me.  I KNEW…..

                                                                                                                                      JerryfromFauq
                                                                                                                                      Participant

                                                                                                                                        About three or four years ago I had a conversation with Dr. Wen Jen Hwu [Melanoma specialist and researcher from MDA (Texas)], regarding this relationship.  At that time she said that there seemed to be a relationship between the presence of estrogen receptors on ones tumor cells and the the likelyhood of Melanoma making ones prognosis worse.  It would be interesting for one of you ladies to contact her now and post what she has learned since then.  She has been very helpful in responding to my emails on my c-kit melanoma questions and has cordinated  with my UVA Melanoma specialist to help me.  Good luck Ladies.

                                                                                                                                        JerryfromFauq
                                                                                                                                        Participant

                                                                                                                                          About three or four years ago I had a conversation with Dr. Wen Jen Hwu [Melanoma specialist and researcher from MDA (Texas)], regarding this relationship.  At that time she said that there seemed to be a relationship between the presence of estrogen receptors on ones tumor cells and the the likelyhood of Melanoma making ones prognosis worse.  It would be interesting for one of you ladies to contact her now and post what she has learned since then.  She has been very helpful in responding to my emails on my c-kit melanoma questions and has cordinated  with my UVA Melanoma specialist to help me.  Good luck Ladies.

                                                                                                                                          JerryfromFauq
                                                                                                                                          Participant

                                                                                                                                            About three or four years ago I had a conversation with Dr. Wen Jen Hwu [Melanoma specialist and researcher from MDA (Texas)], regarding this relationship.  At that time she said that there seemed to be a relationship between the presence of estrogen receptors on ones tumor cells and the the likelyhood of Melanoma making ones prognosis worse.  It would be interesting for one of you ladies to contact her now and post what she has learned since then.  She has been very helpful in responding to my emails on my c-kit melanoma questions and has cordinated  with my UVA Melanoma specialist to help me.  Good luck Ladies.

                                                                                                                                            natasha
                                                                                                                                            Participant

                                                                                                                                              Hi!

                                                                                                                                               

                                                                                                                                                 WHERE IS LINK BETWEEN MELANOMA AND PREGNANCY.

                                                                                                                                                 A lot of women develope melanoma while pregnant.

                                                                                                                                                I developed melanoma during pregnancy.

                                                                                                                                                You should not get pregnant in next 5 years after diagnosed with ANY cance r,and especially melanoma ,because this one (as well as breast cancer) is hormone sensitive.

                                                                                                                                               As I was explained by Docs – if it is still some cancer cells in my body – they can dtay in where forever and don't start to grow ,but if I will become pregnant – it will be huge push to all cancercells to grow and develope.

                                                                                                                                               A lot of pregnant women on the late stagesof pregnancy have dark ,darkened moles ( have you noticed it?) , so moles reacts on your pregnancy . The same can happen with any potencially cancerous moles.

                                                                                                                                               Better not to become pregnant at least for 5 years.

                                                                                                                                               I WAS TOLD 5 YEARS WITH MY STAGE 1A.

                                                                                                                                              I am sure ,after 5-10 yyears of research it will be official – pregnancy can develope melanoma.

                                                                                                                                              natasha
                                                                                                                                              Participant

                                                                                                                                                Hi!

                                                                                                                                                 

                                                                                                                                                   WHERE IS LINK BETWEEN MELANOMA AND PREGNANCY.

                                                                                                                                                   A lot of women develope melanoma while pregnant.

                                                                                                                                                  I developed melanoma during pregnancy.

                                                                                                                                                  You should not get pregnant in next 5 years after diagnosed with ANY cance r,and especially melanoma ,because this one (as well as breast cancer) is hormone sensitive.

                                                                                                                                                 As I was explained by Docs – if it is still some cancer cells in my body – they can dtay in where forever and don't start to grow ,but if I will become pregnant – it will be huge push to all cancercells to grow and develope.

                                                                                                                                                 A lot of pregnant women on the late stagesof pregnancy have dark ,darkened moles ( have you noticed it?) , so moles reacts on your pregnancy . The same can happen with any potencially cancerous moles.

                                                                                                                                                 Better not to become pregnant at least for 5 years.

                                                                                                                                                 I WAS TOLD 5 YEARS WITH MY STAGE 1A.

                                                                                                                                                I am sure ,after 5-10 yyears of research it will be official – pregnancy can develope melanoma.

                                                                                                                                                natasha
                                                                                                                                                Participant

                                                                                                                                                  Hi!

                                                                                                                                                   

                                                                                                                                                     WHERE IS LINK BETWEEN MELANOMA AND PREGNANCY.

                                                                                                                                                     A lot of women develope melanoma while pregnant.

                                                                                                                                                    I developed melanoma during pregnancy.

                                                                                                                                                    You should not get pregnant in next 5 years after diagnosed with ANY cance r,and especially melanoma ,because this one (as well as breast cancer) is hormone sensitive.

                                                                                                                                                   As I was explained by Docs – if it is still some cancer cells in my body – they can dtay in where forever and don't start to grow ,but if I will become pregnant – it will be huge push to all cancercells to grow and develope.

                                                                                                                                                   A lot of pregnant women on the late stagesof pregnancy have dark ,darkened moles ( have you noticed it?) , so moles reacts on your pregnancy . The same can happen with any potencially cancerous moles.

                                                                                                                                                   Better not to become pregnant at least for 5 years.

                                                                                                                                                   I WAS TOLD 5 YEARS WITH MY STAGE 1A.

                                                                                                                                                  I am sure ,after 5-10 yyears of research it will be official – pregnancy can develope melanoma.

                                                                                                                                                  jP85
                                                                                                                                                  Participant
                                                                                                                                                    I’ve been following this board for the past couple of months just to read and absorb but this post is particularly close to home so thought I’d sign up to share my personal experience.

                                                                                                                                                    I had a primary removed in 2001 aged 16 and WLE all clear. I continued to be monitored and I also had a family history of melanoma. Nothing to note between 2001 and November 2012, then 5 months after giving birth to first child I had a seizure out of the blue (otherwise healthy), a few weeks of testing later it’s discovered I’ve got 5 brain tumours, multiple tumours in my lungs, liver and abdomen and removal of one confirms melanoma.

                                                                                                                                                    Ok, so whilst this seems to be more than a coincidence it doesn’t confirm a link to the pregnancy but something else to think about is that melanoma is one of the few cancers that can cross the placenta and my little boy is now having a scan to check things out and will be monitored for a few years to rule this out. Obviously I wasn’t aware of any metastatic disease when I got pregnant and the chances are it had just been sat waiting all this time but not only am I now going through this battle it’s harder still thinking that I may have inadvertantly passed on this horrible disease to my beautiful little boy. I wouldn’t knowingly take that risk, however small.

                                                                                                                                                      Leigh
                                                                                                                                                      Participant

                                                                                                                                                        Hi jP85,

                                                                                                                                                        thanks so much for posting your story, I really appreciate it given all that you have been going through.  I have been struggling with this ever since I first posted and have been looking for reasons to just think of the literature supporting pregnancy, but when I read your story I understand that a bigger family for us is not meant to be.  I really thank you for writing this and I hope and pray that you have as much support as you need.  Looking after a small baby while going through this must be unimagineably hard.  I wish you and your family all the best and if I lived near you I would bring you around some meals and mind your baby.  Best wishes,

                                                                                                                                                        Leigh

                                                                                                                                                        Leigh
                                                                                                                                                        Participant

                                                                                                                                                          Hi jP85,

                                                                                                                                                          thanks so much for posting your story, I really appreciate it given all that you have been going through.  I have been struggling with this ever since I first posted and have been looking for reasons to just think of the literature supporting pregnancy, but when I read your story I understand that a bigger family for us is not meant to be.  I really thank you for writing this and I hope and pray that you have as much support as you need.  Looking after a small baby while going through this must be unimagineably hard.  I wish you and your family all the best and if I lived near you I would bring you around some meals and mind your baby.  Best wishes,

                                                                                                                                                          Leigh

                                                                                                                                                          Leigh
                                                                                                                                                          Participant

                                                                                                                                                            Hi jP85,

                                                                                                                                                            thanks so much for posting your story, I really appreciate it given all that you have been going through.  I have been struggling with this ever since I first posted and have been looking for reasons to just think of the literature supporting pregnancy, but when I read your story I understand that a bigger family for us is not meant to be.  I really thank you for writing this and I hope and pray that you have as much support as you need.  Looking after a small baby while going through this must be unimagineably hard.  I wish you and your family all the best and if I lived near you I would bring you around some meals and mind your baby.  Best wishes,

                                                                                                                                                            Leigh

                                                                                                                                                            POW
                                                                                                                                                            Participant

                                                                                                                                                              jP85, thank you so much for sharing your heartbreaking story. I'm sure it took a lot of courage and emotional grit to write your post. You certainly did nothing wrong or stupid or even particularly risky in getting pregnant– I, too, would think that after 11 years of nothing but clean scans that melanoma was a thing of the past for me. This was a nasty and undeserved bolt from the blue for you and I will pray that you and your baby both come through this in permanent good health.

                                                                                                                                                              However, I have seen several posts on this forum from young couples trying to decide whether to risk a pregnancy after a diagnosis of melanoma. Most of the replies focus on the stastical probability of a recurrance and/or whether there is convincing data about the effect of pregnancy on melanoma. Yours is one of the few "it happened to me" stories on this forum and it really brings home the anxiety and emotional turmoil that melanoma can wreak in a family with young children. I hope and expect that your sharing of your experience will help to inform the choices of many melanoma patients considering pregnancy. 

                                                                                                                                                              Thank you again, and my prayers are with you.

                                                                                                                                                              POW
                                                                                                                                                              Participant

                                                                                                                                                                jP85, thank you so much for sharing your heartbreaking story. I'm sure it took a lot of courage and emotional grit to write your post. You certainly did nothing wrong or stupid or even particularly risky in getting pregnant– I, too, would think that after 11 years of nothing but clean scans that melanoma was a thing of the past for me. This was a nasty and undeserved bolt from the blue for you and I will pray that you and your baby both come through this in permanent good health.

                                                                                                                                                                However, I have seen several posts on this forum from young couples trying to decide whether to risk a pregnancy after a diagnosis of melanoma. Most of the replies focus on the stastical probability of a recurrance and/or whether there is convincing data about the effect of pregnancy on melanoma. Yours is one of the few "it happened to me" stories on this forum and it really brings home the anxiety and emotional turmoil that melanoma can wreak in a family with young children. I hope and expect that your sharing of your experience will help to inform the choices of many melanoma patients considering pregnancy. 

                                                                                                                                                                Thank you again, and my prayers are with you.

                                                                                                                                                                POW
                                                                                                                                                                Participant

                                                                                                                                                                  Leigh, my heart goes out to you and your husband. It is so hard to know what is the "right" decision when there is really no solid data about the effect of pregnancy on melanoma. I think that your current view that you really don't want to jeapordize the happiness and security of your current children is very loving and selfless of you and your husband. I wish you continued health and happiness for many years to come and much joy with your family.

                                                                                                                                                                  POW
                                                                                                                                                                  Participant

                                                                                                                                                                    Leigh, my heart goes out to you and your husband. It is so hard to know what is the "right" decision when there is really no solid data about the effect of pregnancy on melanoma. I think that your current view that you really don't want to jeapordize the happiness and security of your current children is very loving and selfless of you and your husband. I wish you continued health and happiness for many years to come and much joy with your family.

                                                                                                                                                                    POW
                                                                                                                                                                    Participant

                                                                                                                                                                      Leigh, my heart goes out to you and your husband. It is so hard to know what is the "right" decision when there is really no solid data about the effect of pregnancy on melanoma. I think that your current view that you really don't want to jeapordize the happiness and security of your current children is very loving and selfless of you and your husband. I wish you continued health and happiness for many years to come and much joy with your family.

                                                                                                                                                                      POW
                                                                                                                                                                      Participant

                                                                                                                                                                        jP85, thank you so much for sharing your heartbreaking story. I'm sure it took a lot of courage and emotional grit to write your post. You certainly did nothing wrong or stupid or even particularly risky in getting pregnant– I, too, would think that after 11 years of nothing but clean scans that melanoma was a thing of the past for me. This was a nasty and undeserved bolt from the blue for you and I will pray that you and your baby both come through this in permanent good health.

                                                                                                                                                                        However, I have seen several posts on this forum from young couples trying to decide whether to risk a pregnancy after a diagnosis of melanoma. Most of the replies focus on the stastical probability of a recurrance and/or whether there is convincing data about the effect of pregnancy on melanoma. Yours is one of the few "it happened to me" stories on this forum and it really brings home the anxiety and emotional turmoil that melanoma can wreak in a family with young children. I hope and expect that your sharing of your experience will help to inform the choices of many melanoma patients considering pregnancy. 

                                                                                                                                                                        Thank you again, and my prayers are with you.

                                                                                                                                                                      jP85
                                                                                                                                                                      Participant
                                                                                                                                                                        I’ve been following this board for the past couple of months just to read and absorb but this post is particularly close to home so thought I’d sign up to share my personal experience.

                                                                                                                                                                        I had a primary removed in 2001 aged 16 and WLE all clear. I continued to be monitored and I also had a family history of melanoma. Nothing to note between 2001 and November 2012, then 5 months after giving birth to first child I had a seizure out of the blue (otherwise healthy), a few weeks of testing later it’s discovered I’ve got 5 brain tumours, multiple tumours in my lungs, liver and abdomen and removal of one confirms melanoma.

                                                                                                                                                                        Ok, so whilst this seems to be more than a coincidence it doesn’t confirm a link to the pregnancy but something else to think about is that melanoma is one of the few cancers that can cross the placenta and my little boy is now having a scan to check things out and will be monitored for a few years to rule this out. Obviously I wasn’t aware of any metastatic disease when I got pregnant and the chances are it had just been sat waiting all this time but not only am I now going through this battle it’s harder still thinking that I may have inadvertantly passed on this horrible disease to my beautiful little boy. I wouldn’t knowingly take that risk, however small.

                                                                                                                                                                        jP85
                                                                                                                                                                        Participant
                                                                                                                                                                          I’ve been following this board for the past couple of months just to read and absorb but this post is particularly close to home so thought I’d sign up to share my personal experience.

                                                                                                                                                                          I had a primary removed in 2001 aged 16 and WLE all clear. I continued to be monitored and I also had a family history of melanoma. Nothing to note between 2001 and November 2012, then 5 months after giving birth to first child I had a seizure out of the blue (otherwise healthy), a few weeks of testing later it’s discovered I’ve got 5 brain tumours, multiple tumours in my lungs, liver and abdomen and removal of one confirms melanoma.

                                                                                                                                                                          Ok, so whilst this seems to be more than a coincidence it doesn’t confirm a link to the pregnancy but something else to think about is that melanoma is one of the few cancers that can cross the placenta and my little boy is now having a scan to check things out and will be monitored for a few years to rule this out. Obviously I wasn’t aware of any metastatic disease when I got pregnant and the chances are it had just been sat waiting all this time but not only am I now going through this battle it’s harder still thinking that I may have inadvertantly passed on this horrible disease to my beautiful little boy. I wouldn’t knowingly take that risk, however small.

                                                                                                                                                                          Leigh
                                                                                                                                                                          Participant

                                                                                                                                                                            Hi there,

                                                                                                                                                                            I am not sure if this is the best place to write this, but just an update on my recent specialist appt re: melanoma and pregnancy and wondering if anybody has any thoughts.  I haven't read back through the post as I felt quite certain I should not have another child after everybody's responses.  However, my appointment on Thursday last week with one of the top Professors in Australia (Surgeon) makes me wonder….

                                                                                                                                                                            His thoughts were, that at Stage 1a, Queensland, Australia data over 20 years (published last year) indicates a 92% survival rate over 5 years.  Other data would suggest 95% survival rate over 5 years.  Other surgeons/dermatologists have been much more positive with their prognostic figures given my negative sentinel lymph node, although others debate that the lymph node gives any information (no studies including this information).  One surgeon (plastics and not a melanoma specialist) suggested that this should never have been removed in the first place and some recent massive US studies indicate that in fact removal gives a worse prognosis.  The whole thing does my head in and I cant undo that so I am ignoring this.

                                                                                                                                                                            In any case, the Professor/Melanoma Specialist states that at 3 years out, 80% of recurrences will have occurred.  Therefore, taking the worst figures,  ie. 92% survival rate, goes up to 98.4% survival rate after the three year period elapses.  If you take 95% survival, after three years this will go up to 99% survival rate after three years???  I dont know that this truly pans out this way as there is a tail end and there is always, always a risk it will recur.  I know Linda Haley who was a wonderful board member had melanoma diagnosed, waited a long period before she fell pregnant, had no issues, and then recurred 30 years later. 

                                                                                                                                                                             

                                                                                                                                                                            I am not sure what to make of these figures.  At the end of the day we are all individuals and the stats dont mean much to you when you are the one person who recurrs.  But I am just wondering if this means the risk of falling pregnant is slim and I should not discount it completely?  It did grow whilst pregnant and I am not sure what this means in terms of risk of recurrence.

                                                                                                                                                                             

                                                                                                                                                                            If anybody has any advice, or suggestions for a Doctor I could call in the States for a phone consult etc that would be much appreciated.  I am very confused, still very keen to have a bigger family and have been looking at all kinds of options like surrogacy and adoption, neither of which seem open to me. Any thoughts at all would be appreciated!   

                                                                                                                                                                            Leigh
                                                                                                                                                                            Participant

                                                                                                                                                                              Hi there,

                                                                                                                                                                              I am not sure if this is the best place to write this, but just an update on my recent specialist appt re: melanoma and pregnancy and wondering if anybody has any thoughts.  I haven't read back through the post as I felt quite certain I should not have another child after everybody's responses.  However, my appointment on Thursday last week with one of the top Professors in Australia (Surgeon) makes me wonder….

                                                                                                                                                                              His thoughts were, that at Stage 1a, Queensland, Australia data over 20 years (published last year) indicates a 92% survival rate over 5 years.  Other data would suggest 95% survival rate over 5 years.  Other surgeons/dermatologists have been much more positive with their prognostic figures given my negative sentinel lymph node, although others debate that the lymph node gives any information (no studies including this information).  One surgeon (plastics and not a melanoma specialist) suggested that this should never have been removed in the first place and some recent massive US studies indicate that in fact removal gives a worse prognosis.  The whole thing does my head in and I cant undo that so I am ignoring this.

                                                                                                                                                                              In any case, the Professor/Melanoma Specialist states that at 3 years out, 80% of recurrences will have occurred.  Therefore, taking the worst figures,  ie. 92% survival rate, goes up to 98.4% survival rate after the three year period elapses.  If you take 95% survival, after three years this will go up to 99% survival rate after three years???  I dont know that this truly pans out this way as there is a tail end and there is always, always a risk it will recur.  I know Linda Haley who was a wonderful board member had melanoma diagnosed, waited a long period before she fell pregnant, had no issues, and then recurred 30 years later. 

                                                                                                                                                                               

                                                                                                                                                                              I am not sure what to make of these figures.  At the end of the day we are all individuals and the stats dont mean much to you when you are the one person who recurrs.  But I am just wondering if this means the risk of falling pregnant is slim and I should not discount it completely?  It did grow whilst pregnant and I am not sure what this means in terms of risk of recurrence.

                                                                                                                                                                               

                                                                                                                                                                              If anybody has any advice, or suggestions for a Doctor I could call in the States for a phone consult etc that would be much appreciated.  I am very confused, still very keen to have a bigger family and have been looking at all kinds of options like surrogacy and adoption, neither of which seem open to me. Any thoughts at all would be appreciated!   

                                                                                                                                                                              Leigh
                                                                                                                                                                              Participant

                                                                                                                                                                                Hi there,

                                                                                                                                                                                I am not sure if this is the best place to write this, but just an update on my recent specialist appt re: melanoma and pregnancy and wondering if anybody has any thoughts.  I haven't read back through the post as I felt quite certain I should not have another child after everybody's responses.  However, my appointment on Thursday last week with one of the top Professors in Australia (Surgeon) makes me wonder….

                                                                                                                                                                                His thoughts were, that at Stage 1a, Queensland, Australia data over 20 years (published last year) indicates a 92% survival rate over 5 years.  Other data would suggest 95% survival rate over 5 years.  Other surgeons/dermatologists have been much more positive with their prognostic figures given my negative sentinel lymph node, although others debate that the lymph node gives any information (no studies including this information).  One surgeon (plastics and not a melanoma specialist) suggested that this should never have been removed in the first place and some recent massive US studies indicate that in fact removal gives a worse prognosis.  The whole thing does my head in and I cant undo that so I am ignoring this.

                                                                                                                                                                                In any case, the Professor/Melanoma Specialist states that at 3 years out, 80% of recurrences will have occurred.  Therefore, taking the worst figures,  ie. 92% survival rate, goes up to 98.4% survival rate after the three year period elapses.  If you take 95% survival, after three years this will go up to 99% survival rate after three years???  I dont know that this truly pans out this way as there is a tail end and there is always, always a risk it will recur.  I know Linda Haley who was a wonderful board member had melanoma diagnosed, waited a long period before she fell pregnant, had no issues, and then recurred 30 years later. 

                                                                                                                                                                                 

                                                                                                                                                                                I am not sure what to make of these figures.  At the end of the day we are all individuals and the stats dont mean much to you when you are the one person who recurrs.  But I am just wondering if this means the risk of falling pregnant is slim and I should not discount it completely?  It did grow whilst pregnant and I am not sure what this means in terms of risk of recurrence.

                                                                                                                                                                                 

                                                                                                                                                                                If anybody has any advice, or suggestions for a Doctor I could call in the States for a phone consult etc that would be much appreciated.  I am very confused, still very keen to have a bigger family and have been looking at all kinds of options like surrogacy and adoption, neither of which seem open to me. Any thoughts at all would be appreciated!   

                                                                                                                                                                                Annalive
                                                                                                                                                                                Participant

                                                                                                                                                                                  Hi Leigh,

                                                                                                                                                                                  How are you doing now?  I have recently become interested in this topic from another point of view.  I had melanoma Stage 1 20 years ago (age 29.)  2 years ago I developed a recurrence, technically 3B, regional mets in axillary region.  I just recently had surgery to remove it and am doing well with an integrated approach using hyperthermia, Vit C, mistletoe, Avemar, GcMAF  a change in diet and many nutritional supps.   I ask myself, what is it that happened that after 20 years this would happen?  Besides some very stressful situations which may have contributed, I did the HcG diet (homeopathic,) 2 times in 1 year and about a year later discovered the melanoma.  HcG is very high in women when pregnant, in fact it is the hormone which is  being tested in those home pregnancy tests.  My surgeon mentioned a higher incidence of melanoma in pregnant women.  While working at NIH he had many patients whose melanoma went wild while pregnant.  It is a leap to connect the two, however for me I would definately never do the HcG diet again. btw, the diet worked for me to lose weight at the time and I thought it was a great thing never dreaming of this outcome.

                                                                                                                                                                                  In reading some of the responses to your inquiry a number of people were on the side of live the life you want to live… the future is unknown.  Treating melanoma is tricky for a pregnant woman.  Since I am approaching melanoma tretment in an integrated way I know there are many non-toxic treatments and some very skilled doctors who may be able to work with you.  If interested let me know and I'll give you more info.

                                                                                                                                                                                  Wishing you the Best,  Ann

                                                                                                                                                                                  Annalive
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Hi Leigh,

                                                                                                                                                                                    How are you doing now?  I have recently become interested in this topic from another point of view.  I had melanoma Stage 1 20 years ago (age 29.)  2 years ago I developed a recurrence, technically 3B, regional mets in axillary region.  I just recently had surgery to remove it and am doing well with an integrated approach using hyperthermia, Vit C, mistletoe, Avemar, GcMAF  a change in diet and many nutritional supps.   I ask myself, what is it that happened that after 20 years this would happen?  Besides some very stressful situations which may have contributed, I did the HcG diet (homeopathic,) 2 times in 1 year and about a year later discovered the melanoma.  HcG is very high in women when pregnant, in fact it is the hormone which is  being tested in those home pregnancy tests.  My surgeon mentioned a higher incidence of melanoma in pregnant women.  While working at NIH he had many patients whose melanoma went wild while pregnant.  It is a leap to connect the two, however for me I would definately never do the HcG diet again. btw, the diet worked for me to lose weight at the time and I thought it was a great thing never dreaming of this outcome.

                                                                                                                                                                                    In reading some of the responses to your inquiry a number of people were on the side of live the life you want to live… the future is unknown.  Treating melanoma is tricky for a pregnant woman.  Since I am approaching melanoma tretment in an integrated way I know there are many non-toxic treatments and some very skilled doctors who may be able to work with you.  If interested let me know and I'll give you more info.

                                                                                                                                                                                    Wishing you the Best,  Ann

                                                                                                                                                                                    Annalive
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Hi Leigh,

                                                                                                                                                                                      How are you doing now?  I have recently become interested in this topic from another point of view.  I had melanoma Stage 1 20 years ago (age 29.)  2 years ago I developed a recurrence, technically 3B, regional mets in axillary region.  I just recently had surgery to remove it and am doing well with an integrated approach using hyperthermia, Vit C, mistletoe, Avemar, GcMAF  a change in diet and many nutritional supps.   I ask myself, what is it that happened that after 20 years this would happen?  Besides some very stressful situations which may have contributed, I did the HcG diet (homeopathic,) 2 times in 1 year and about a year later discovered the melanoma.  HcG is very high in women when pregnant, in fact it is the hormone which is  being tested in those home pregnancy tests.  My surgeon mentioned a higher incidence of melanoma in pregnant women.  While working at NIH he had many patients whose melanoma went wild while pregnant.  It is a leap to connect the two, however for me I would definately never do the HcG diet again. btw, the diet worked for me to lose weight at the time and I thought it was a great thing never dreaming of this outcome.

                                                                                                                                                                                      In reading some of the responses to your inquiry a number of people were on the side of live the life you want to live… the future is unknown.  Treating melanoma is tricky for a pregnant woman.  Since I am approaching melanoma tretment in an integrated way I know there are many non-toxic treatments and some very skilled doctors who may be able to work with you.  If interested let me know and I'll give you more info.

                                                                                                                                                                                      Wishing you the Best,  Ann

                                                                                                                                                                                      CWeclaw
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Please see the link to an excellent clinical trial on the issue of Pregnancy and Melanoma conducted by Dr. Natasha Mesinkovska at Cleveland Clinic and published in OBGYBNews.:

                                                                                                                                                                                        http://www.obgynnews.com/news/single-view/worse-melanoma-outcomes-found-in-pregnant-women/4d0a98a691f12c417a208ef9ff4eb562.html

                                                                                                                                                                                        This is a well designed study with statisticaly significant outcomes showing and increase in mortality, recurrence and metastais in melanoma patients pregnant or shortly after pregnancy.

                                                                                                                                                                                        CWeclaw
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Please see the link to an excellent clinical trial on the issue of Pregnancy and Melanoma conducted by Dr. Natasha Mesinkovska at Cleveland Clinic and published in OBGYBNews.:

                                                                                                                                                                                          http://www.obgynnews.com/news/single-view/worse-melanoma-outcomes-found-in-pregnant-women/4d0a98a691f12c417a208ef9ff4eb562.html

                                                                                                                                                                                          This is a well designed study with statisticaly significant outcomes showing and increase in mortality, recurrence and metastais in melanoma patients pregnant or shortly after pregnancy.

                                                                                                                                                                                          CWeclaw
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Please see the link to an excellent clinical trial on the issue of Pregnancy and Melanoma conducted by Dr. Natasha Mesinkovska at Cleveland Clinic and published in OBGYBNews.:

                                                                                                                                                                                            http://www.obgynnews.com/news/single-view/worse-melanoma-outcomes-found-in-pregnant-women/4d0a98a691f12c417a208ef9ff4eb562.html

                                                                                                                                                                                            This is a well designed study with statisticaly significant outcomes showing and increase in mortality, recurrence and metastais in melanoma patients pregnant or shortly after pregnancy.

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                                                                                                                                                                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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