Amanda78

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.

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.

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.

Hi Brent,

My thoughts and prayers are with you; Sorry I cannot offer any help with your current S/E. I am a Canadian stage 1B melanoma patient living in Switzerland. I was diagnosed with melanoma in May 2012 and had slnb and wle. In September I moved to Switzerland to join my husband who is working here. I find even amongst Drs there are huge discrepencies with their opinion on risk. I met a few pts with <1mm melanomas on face/neck/scalp which progressed to Stage 4 even though they were told "you caught it early". I can't understand why the neck for instance is a worse place – more vascular? I don't believe so. I agree that its frustrating when ppl sometimes assume that if you get it quick your guaranteed a cure – it only takes a few rogue cells to wreek havoc later on. Here in Switzerland they do body scanning, x rays, and full body ultrasounds (neck, groin, armpits) every few months for Stage 1B. It is really unscientific and unproven method of follow up based on what we all know about melanoma. Especially since for lesions under 1 mm there seems to be a greater risk of recurrence around 10 year mark vs. lesions greater than 1mm were the risk seems highest in first 5 (although the first two years are still pretty much acepted as the upper level of risk for reccurence). What are the Swiss thinking they will find? HAve they ever been able to diagnose recurrence based on these time-consuming Ultrasounds? I am doubtful. I will be part of a melanoma group here in Switzerlandand will meet next week – plenty of patients are currently on a variety of txs so if I can find anything out I will ask and let you know. Until than I will be thinking of you Brent and et al and wishing you well!

Hi Brent,

My thoughts and prayers are with you; Sorry I cannot offer any help with your current S/E. I am a Canadian stage 1B melanoma patient living in Switzerland. I was diagnosed with melanoma in May 2012 and had slnb and wle. In September I moved to Switzerland to join my husband who is working here. I find even amongst Drs there are huge discrepencies with their opinion on risk. I met a few pts with <1mm melanomas on face/neck/scalp which progressed to Stage 4 even though they were told "you caught it early". I can't understand why the neck for instance is a worse place – more vascular? I don't believe so. I agree that its frustrating when ppl sometimes assume that if you get it quick your guaranteed a cure – it only takes a few rogue cells to wreek havoc later on. Here in Switzerland they do body scanning, x rays, and full body ultrasounds (neck, groin, armpits) every few months for Stage 1B. It is really unscientific and unproven method of follow up based on what we all know about melanoma. Especially since for lesions under 1 mm there seems to be a greater risk of recurrence around 10 year mark vs. lesions greater than 1mm were the risk seems highest in first 5 (although the first two years are still pretty much acepted as the upper level of risk for reccurence). What are the Swiss thinking they will find? HAve they ever been able to diagnose recurrence based on these time-consuming Ultrasounds? I am doubtful. I will be part of a melanoma group here in Switzerlandand will meet next week – plenty of patients are currently on a variety of txs so if I can find anything out I will ask and let you know. Until than I will be thinking of you Brent and et al and wishing you well!

Hi Brent,

My thoughts and prayers are with you; Sorry I cannot offer any help with your current S/E. I am a Canadian stage 1B melanoma patient living in Switzerland. I was diagnosed with melanoma in May 2012 and had slnb and wle. In September I moved to Switzerland to join my husband who is working here. I find even amongst Drs there are huge discrepencies with their opinion on risk. I met a few pts with <1mm melanomas on face/neck/scalp which progressed to Stage 4 even though they were told "you caught it early". I can't understand why the neck for instance is a worse place – more vascular? I don't believe so. I agree that its frustrating when ppl sometimes assume that if you get it quick your guaranteed a cure – it only takes a few rogue cells to wreek havoc later on. Here in Switzerland they do body scanning, x rays, and full body ultrasounds (neck, groin, armpits) every few months for Stage 1B. It is really unscientific and unproven method of follow up based on what we all know about melanoma. Especially since for lesions under 1 mm there seems to be a greater risk of recurrence around 10 year mark vs. lesions greater than 1mm were the risk seems highest in first 5 (although the first two years are still pretty much acepted as the upper level of risk for reccurence). What are the Swiss thinking they will find? HAve they ever been able to diagnose recurrence based on these time-consuming Ultrasounds? I am doubtful. I will be part of a melanoma group here in Switzerlandand will meet next week – plenty of patients are currently on a variety of txs so if I can find anything out I will ask and let you know. Until than I will be thinking of you Brent and et al and wishing you well!

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 

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 

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 

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.

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.

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.

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.

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.

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.