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I’m new. Definitely confused.

Forums Cutaneous Melanoma Community I’m new. Definitely confused.

  • Post
    Colleen66
    Participant

      Hi all.  Basically, I had a growth that started last winter.  In June I wanted it removed for cosmetic purposes.  Turned out it was melanoma.   I've had the wide excision surgery and sentinel node removal.  The cancer in my leg is now clear but the node had cancer.  It is stage 3a.  Now comes the choices of treatment.  

      1.  Do nothing.

      2. Do the lymph node removal in the left groin.

      3. Do the interferon treatment. 

      4. Combination of 2 and 3.

      Hi all.  Basically, I had a growth that started last winter.  In June I wanted it removed for cosmetic purposes.  Turned out it was melanoma.   I've had the wide excision surgery and sentinel node removal.  The cancer in my leg is now clear but the node had cancer.  It is stage 3a.  Now comes the choices of treatment.  

      1.  Do nothing.

      2. Do the lymph node removal in the left groin.

      3. Do the interferon treatment. 

      4. Combination of 2 and 3.

      5. Go into a trial. 20% chance for the surgery, 80% chance in the no surgery group.  The no surgery group gets ultrasounds.  Both groups may choose the interferon treatment if they choose.  

      I am uncomfortable knowing that the cancer is still in me.  My family all have their own opinions but I am really scared and having difficulty weighing the risks vs. Reward.

      I am 47 of Irish ancestry.  Fair skin, freckles, blue eyes.  The Doc told me I am now high risk for recurrence.  My oncologist is also the head of this trial.  She is of the opinion that I should do the trial, bias?  I don't know.  My immune system is already compromised as I have hypothyroidism,  celiac disease and sjogrens.  I am also bi-polar, severe depression, anxiety disorder and a few more acronyms.   My psych issues have been stable except for the anxiety, for obvious reasons.  

      Do you guys have any insight for me? Anything at all will be helpful.

      Colleen 

    Viewing 23 reply threads
    • Replies
        CarolA
        Participant

          Hi Colleen.    Being new to the melanoma world is an overwhelming place to be.   The start.  Reading and trying to comprehend.  You have the basics for your situation down and understood, so that puts you at a good starting point.

          I would like to recommend that you refer to a previous post, dated 10/12/12, by EmilyandMike (I found it on page 4), "Sentinal Lymph Node Biopsy and Metromet Controversy"     Unfortunately, this does not have the answer for you, but it covers this particular situation you are facing and the decision you have to make.   My comments about my history are there about going the route of the ultra-sound observation, ultimately leading to a total lymph node dissection

          Colleen, there really isn't an answer.   Ultimately, it will be your choice, your decision.   Our mantra here is to do research, which you are doing, make your decision based on your situation (family, work, health history, caregiver support, lifestyle, medical care/facilities available to you and your trust in their advice).   You make YOUR decision for you, and you don't look back.   At Stage III, the options are not black or white (some might disagree  based on their choice of treatment).   The one thing to know is that there is a post-surgery time expiration to choose interferon.   Something like 50+ days to decide.  Someone will clarify that, I'm certain.

          Briefly, my situation began like yours 3a but it ws my upper torso, left armpit (axillary) for the nodes.  I chose to participate in a study, using ultra-sound, a duration of 8 months before a total LND was done, 28 nodes removed, none having evidence of melanoma.    I don't regret the choice I made, for me.   I have residual issues of lymphedema.

          Refer to that post from 10/12.   I had to read the doctor's summations several times, but the comments from MPIP members are good.   Again, there is no "answer" just choices with grey areas of uncertainty.   Good luck, Colleen.

          CarolA

               

          CarolA
          Participant

            Hi Colleen.    Being new to the melanoma world is an overwhelming place to be.   The start.  Reading and trying to comprehend.  You have the basics for your situation down and understood, so that puts you at a good starting point.

            I would like to recommend that you refer to a previous post, dated 10/12/12, by EmilyandMike (I found it on page 4), "Sentinal Lymph Node Biopsy and Metromet Controversy"     Unfortunately, this does not have the answer for you, but it covers this particular situation you are facing and the decision you have to make.   My comments about my history are there about going the route of the ultra-sound observation, ultimately leading to a total lymph node dissection

            Colleen, there really isn't an answer.   Ultimately, it will be your choice, your decision.   Our mantra here is to do research, which you are doing, make your decision based on your situation (family, work, health history, caregiver support, lifestyle, medical care/facilities available to you and your trust in their advice).   You make YOUR decision for you, and you don't look back.   At Stage III, the options are not black or white (some might disagree  based on their choice of treatment).   The one thing to know is that there is a post-surgery time expiration to choose interferon.   Something like 50+ days to decide.  Someone will clarify that, I'm certain.

            Briefly, my situation began like yours 3a but it ws my upper torso, left armpit (axillary) for the nodes.  I chose to participate in a study, using ultra-sound, a duration of 8 months before a total LND was done, 28 nodes removed, none having evidence of melanoma.    I don't regret the choice I made, for me.   I have residual issues of lymphedema.

            Refer to that post from 10/12.   I had to read the doctor's summations several times, but the comments from MPIP members are good.   Again, there is no "answer" just choices with grey areas of uncertainty.   Good luck, Colleen.

            CarolA

                 

              Mandi0280
              Participant

                Was wondering about the part that you put on here about the interferon & there being a time limit. I had never heard this before. My husband had his surgery last October and didn't do interferon until this June after he was taken off of the ipi/interferon trial due to colitis. He is stage 3b. So was wondering why the time limit? & was my husband's Dr not aware of this time limit? hmmm

                 

                Thanks,

                Mandi

                CarolA
                Participant

                  Mandi – as many of us here do, I have read and retained some information through the years.   But what we read and absorb can often be different from some doctor's actual protocol for their patients.  

                  What I recall, is that after a patient has their Wide Local Excision (WLE) and Sentinal Node Biopsy (SNB),  interferon treatment "should" begin in just under two months after these procedures.   Now, I will tell you that I tried to find this fact somewhere, researched some—and I can't find it in Interferon information.    But I've been around here for 7 years and that statement (I think it actually was stated as 57 days) was repeated a number of times that it is imbedded in my brain from the experiences of other melanoma warriors on this board.

                  I didn't have the time to go through the MPIP board here, to read so many of the posts to find that statement.   And I don't know of what use it would be for you, your husband.   His situation may have been different for his doctor to order this form and tming of this  treatment for him.   It wasn't wrong.    At Stage 3 the options for treatment are not set in stone.   You have to do, we all have to do, what we feel comfortable with and trust that choice.   Nothing like having a post come up contradicting what you may have chosen to do, right?   I'm sorry if it caused you concern.   But this I do know, it was not "wrong" and you two should continue to research and educate yourself to validate your choices on this journey with mel.   I'm sure my MD's radical, surgical approach for me to have a mastectomy sent some questioning.  But it worked for me!  Don't look back.   Good luck and wishes for stable tests and scans in the future.

                  CarolA

                  Mandi0280
                  Participant

                    CarolA,

                     Thanks so much for the reply. You're very right..there is no looking back. There was nothing wrong with your post..you were just giving the information that you had been given. Even though my husband took interferon past the "deadline" I honestly am very glad the Dr went ahead and put him on it. If this awful cancer ever does come back I think I will feel better knowing he did everything that was available to keep it from happening. Alot if ppl have negative things to say about interferon but it is a very personal decision if you choose to do it or not & at stage 3 there aren't alot of other options. I def am not a "wait and see" kind of person…but some ppl are. The best thing in the world is to get on here and see many stage 3 ppl that are 5 or 10 years out from diagnosis and are NED. We honestly will probably not know if interferon had anything to do with them being NED or if this cancer is just gone from their body for good. Thanks so much for taking the time to reply!

                    Mandi

                    Praying for a cure!

                    Mandi0280
                    Participant

                      CarolA,

                       Thanks so much for the reply. You're very right..there is no looking back. There was nothing wrong with your post..you were just giving the information that you had been given. Even though my husband took interferon past the "deadline" I honestly am very glad the Dr went ahead and put him on it. If this awful cancer ever does come back I think I will feel better knowing he did everything that was available to keep it from happening. Alot if ppl have negative things to say about interferon but it is a very personal decision if you choose to do it or not & at stage 3 there aren't alot of other options. I def am not a "wait and see" kind of person…but some ppl are. The best thing in the world is to get on here and see many stage 3 ppl that are 5 or 10 years out from diagnosis and are NED. We honestly will probably not know if interferon had anything to do with them being NED or if this cancer is just gone from their body for good. Thanks so much for taking the time to reply!

                      Mandi

                      Praying for a cure!

                      Mandi0280
                      Participant

                        CarolA,

                         Thanks so much for the reply. You're very right..there is no looking back. There was nothing wrong with your post..you were just giving the information that you had been given. Even though my husband took interferon past the "deadline" I honestly am very glad the Dr went ahead and put him on it. If this awful cancer ever does come back I think I will feel better knowing he did everything that was available to keep it from happening. Alot if ppl have negative things to say about interferon but it is a very personal decision if you choose to do it or not & at stage 3 there aren't alot of other options. I def am not a "wait and see" kind of person…but some ppl are. The best thing in the world is to get on here and see many stage 3 ppl that are 5 or 10 years out from diagnosis and are NED. We honestly will probably not know if interferon had anything to do with them being NED or if this cancer is just gone from their body for good. Thanks so much for taking the time to reply!

                        Mandi

                        Praying for a cure!

                        CarolA
                        Participant

                          Mandi – as many of us here do, I have read and retained some information through the years.   But what we read and absorb can often be different from some doctor's actual protocol for their patients.  

                          What I recall, is that after a patient has their Wide Local Excision (WLE) and Sentinal Node Biopsy (SNB),  interferon treatment "should" begin in just under two months after these procedures.   Now, I will tell you that I tried to find this fact somewhere, researched some—and I can't find it in Interferon information.    But I've been around here for 7 years and that statement (I think it actually was stated as 57 days) was repeated a number of times that it is imbedded in my brain from the experiences of other melanoma warriors on this board.

                          I didn't have the time to go through the MPIP board here, to read so many of the posts to find that statement.   And I don't know of what use it would be for you, your husband.   His situation may have been different for his doctor to order this form and tming of this  treatment for him.   It wasn't wrong.    At Stage 3 the options for treatment are not set in stone.   You have to do, we all have to do, what we feel comfortable with and trust that choice.   Nothing like having a post come up contradicting what you may have chosen to do, right?   I'm sorry if it caused you concern.   But this I do know, it was not "wrong" and you two should continue to research and educate yourself to validate your choices on this journey with mel.   I'm sure my MD's radical, surgical approach for me to have a mastectomy sent some questioning.  But it worked for me!  Don't look back.   Good luck and wishes for stable tests and scans in the future.

                          CarolA

                          CarolA
                          Participant

                            Mandi – as many of us here do, I have read and retained some information through the years.   But what we read and absorb can often be different from some doctor's actual protocol for their patients.  

                            What I recall, is that after a patient has their Wide Local Excision (WLE) and Sentinal Node Biopsy (SNB),  interferon treatment "should" begin in just under two months after these procedures.   Now, I will tell you that I tried to find this fact somewhere, researched some—and I can't find it in Interferon information.    But I've been around here for 7 years and that statement (I think it actually was stated as 57 days) was repeated a number of times that it is imbedded in my brain from the experiences of other melanoma warriors on this board.

                            I didn't have the time to go through the MPIP board here, to read so many of the posts to find that statement.   And I don't know of what use it would be for you, your husband.   His situation may have been different for his doctor to order this form and tming of this  treatment for him.   It wasn't wrong.    At Stage 3 the options for treatment are not set in stone.   You have to do, we all have to do, what we feel comfortable with and trust that choice.   Nothing like having a post come up contradicting what you may have chosen to do, right?   I'm sorry if it caused you concern.   But this I do know, it was not "wrong" and you two should continue to research and educate yourself to validate your choices on this journey with mel.   I'm sure my MD's radical, surgical approach for me to have a mastectomy sent some questioning.  But it worked for me!  Don't look back.   Good luck and wishes for stable tests and scans in the future.

                            CarolA

                            Mandi0280
                            Participant

                              Was wondering about the part that you put on here about the interferon & there being a time limit. I had never heard this before. My husband had his surgery last October and didn't do interferon until this June after he was taken off of the ipi/interferon trial due to colitis. He is stage 3b. So was wondering why the time limit? & was my husband's Dr not aware of this time limit? hmmm

                               

                              Thanks,

                              Mandi

                              Mandi0280
                              Participant

                                Was wondering about the part that you put on here about the interferon & there being a time limit. I had never heard this before. My husband had his surgery last October and didn't do interferon until this June after he was taken off of the ipi/interferon trial due to colitis. He is stage 3b. So was wondering why the time limit? & was my husband's Dr not aware of this time limit? hmmm

                                 

                                Thanks,

                                Mandi

                              CarolA
                              Participant

                                Hi Colleen.    Being new to the melanoma world is an overwhelming place to be.   The start.  Reading and trying to comprehend.  You have the basics for your situation down and understood, so that puts you at a good starting point.

                                I would like to recommend that you refer to a previous post, dated 10/12/12, by EmilyandMike (I found it on page 4), "Sentinal Lymph Node Biopsy and Metromet Controversy"     Unfortunately, this does not have the answer for you, but it covers this particular situation you are facing and the decision you have to make.   My comments about my history are there about going the route of the ultra-sound observation, ultimately leading to a total lymph node dissection

                                Colleen, there really isn't an answer.   Ultimately, it will be your choice, your decision.   Our mantra here is to do research, which you are doing, make your decision based on your situation (family, work, health history, caregiver support, lifestyle, medical care/facilities available to you and your trust in their advice).   You make YOUR decision for you, and you don't look back.   At Stage III, the options are not black or white (some might disagree  based on their choice of treatment).   The one thing to know is that there is a post-surgery time expiration to choose interferon.   Something like 50+ days to decide.  Someone will clarify that, I'm certain.

                                Briefly, my situation began like yours 3a but it ws my upper torso, left armpit (axillary) for the nodes.  I chose to participate in a study, using ultra-sound, a duration of 8 months before a total LND was done, 28 nodes removed, none having evidence of melanoma.    I don't regret the choice I made, for me.   I have residual issues of lymphedema.

                                Refer to that post from 10/12.   I had to read the doctor's summations several times, but the comments from MPIP members are good.   Again, there is no "answer" just choices with grey areas of uncertainty.   Good luck, Colleen.

                                CarolA

                                     

                                Linny
                                Participant

                                  What you ultimately do, has to be your own decision. But here are some things to think about:

                                  !.  Do nothing is a viable option. What it should involve is routine visits to your oncologist, routine skin exams, and routine scans. The scan schedule will vary, depending on the doctor.

                                  2.  Lymph node removal isn't a bad idea. But it does come with a side effect: lymphedema. Lymphedema is a flluid buildup/swelling that come about as a result of blocked or missing lymph nodes. Not everyone gets it. But you do need to be aware of it and know that it is a mangeable condition.

                                  3 & 4.  Interferon is still being offered as a treatment option. However, percentage-wise its effectiveness is not all that different from doing nothing. It also comes with a host of nasty side effects that have the potential of aggravating your depression and anxiety disorder.

                                  5.  Trials are not necessarily a bad option. I chose my trial because I didn't want to be sick from the interferon for an entire year, I didn't feel secure with observation only (do nothing), and the trial gave me frequent observation plus a 2 out of 3 chance of getting the vaccine the trial was offering.

                                  The anxiety you're experiencing is common and does subside. The first few weeks after diagnosis are the worst. But it really does level off and you'll be your normal self again. I was pretty bad. How bad? Bad enough that visitng this board freaked me out.

                                  Something else to think about is that another facility may offer a trial that your facility does not offer. For example,  _Paul_  from Washington State was able to find a trial at Johns Hopkins that was not offered at his local faciity.

                                  Also don't be afraid to seek a second, or even a third opinion.

                                  Linny
                                  Participant

                                    What you ultimately do, has to be your own decision. But here are some things to think about:

                                    !.  Do nothing is a viable option. What it should involve is routine visits to your oncologist, routine skin exams, and routine scans. The scan schedule will vary, depending on the doctor.

                                    2.  Lymph node removal isn't a bad idea. But it does come with a side effect: lymphedema. Lymphedema is a flluid buildup/swelling that come about as a result of blocked or missing lymph nodes. Not everyone gets it. But you do need to be aware of it and know that it is a mangeable condition.

                                    3 & 4.  Interferon is still being offered as a treatment option. However, percentage-wise its effectiveness is not all that different from doing nothing. It also comes with a host of nasty side effects that have the potential of aggravating your depression and anxiety disorder.

                                    5.  Trials are not necessarily a bad option. I chose my trial because I didn't want to be sick from the interferon for an entire year, I didn't feel secure with observation only (do nothing), and the trial gave me frequent observation plus a 2 out of 3 chance of getting the vaccine the trial was offering.

                                    The anxiety you're experiencing is common and does subside. The first few weeks after diagnosis are the worst. But it really does level off and you'll be your normal self again. I was pretty bad. How bad? Bad enough that visitng this board freaked me out.

                                    Something else to think about is that another facility may offer a trial that your facility does not offer. For example,  _Paul_  from Washington State was able to find a trial at Johns Hopkins that was not offered at his local faciity.

                                    Also don't be afraid to seek a second, or even a third opinion.

                                    Linny
                                    Participant

                                      What you ultimately do, has to be your own decision. But here are some things to think about:

                                      !.  Do nothing is a viable option. What it should involve is routine visits to your oncologist, routine skin exams, and routine scans. The scan schedule will vary, depending on the doctor.

                                      2.  Lymph node removal isn't a bad idea. But it does come with a side effect: lymphedema. Lymphedema is a flluid buildup/swelling that come about as a result of blocked or missing lymph nodes. Not everyone gets it. But you do need to be aware of it and know that it is a mangeable condition.

                                      3 & 4.  Interferon is still being offered as a treatment option. However, percentage-wise its effectiveness is not all that different from doing nothing. It also comes with a host of nasty side effects that have the potential of aggravating your depression and anxiety disorder.

                                      5.  Trials are not necessarily a bad option. I chose my trial because I didn't want to be sick from the interferon for an entire year, I didn't feel secure with observation only (do nothing), and the trial gave me frequent observation plus a 2 out of 3 chance of getting the vaccine the trial was offering.

                                      The anxiety you're experiencing is common and does subside. The first few weeks after diagnosis are the worst. But it really does level off and you'll be your normal self again. I was pretty bad. How bad? Bad enough that visitng this board freaked me out.

                                      Something else to think about is that another facility may offer a trial that your facility does not offer. For example,  _Paul_  from Washington State was able to find a trial at Johns Hopkins that was not offered at his local faciity.

                                      Also don't be afraid to seek a second, or even a third opinion.

                                      washoegal
                                      Participant

                                        Hi Colleen, sorry you have joined us.  So many options, unfortunately none of them are very good.  I too am stage 3a.  I chose to have the remainder of my lymph nodes removed (all clear thank goodness) and then to "wait and watch". 

                                        I was offered the ultrasound options also, I declined.   But I did allow an utrasound  before I had the SNLB which showed nothing.  But surprise 2 nodes had microscopic amounts of MEL.  So for my experience ultrasound has limited application. 

                                        I suffer from depression also, that's one big strike against interferon.  It does have some bad side effects but sometimes it is no worse than the flu.  On the other hand it is only effective in 3-7% of the people and does not extend the survival rate.  But Interferon is a personal desision.  Some people feel they must take some action.

                                        My complete lymph node dissection was under arm so it was easier.  The groin appears to be tougher.  You would in all probability get lymphedema.  If you manage it at the first signs you can control it. 

                                        No easy answers.  As for reoccurance….Except for the blue eyes ( I have green) we are the pretty much the same.  I am 2 years 8 months All Clear (NED), multiple primaries are not the rule and hopefully you will have tackled this beast.

                                        Good Luck,

                                        Mary

                                        washoegal
                                        Participant

                                          Hi Colleen, sorry you have joined us.  So many options, unfortunately none of them are very good.  I too am stage 3a.  I chose to have the remainder of my lymph nodes removed (all clear thank goodness) and then to "wait and watch". 

                                          I was offered the ultrasound options also, I declined.   But I did allow an utrasound  before I had the SNLB which showed nothing.  But surprise 2 nodes had microscopic amounts of MEL.  So for my experience ultrasound has limited application. 

                                          I suffer from depression also, that's one big strike against interferon.  It does have some bad side effects but sometimes it is no worse than the flu.  On the other hand it is only effective in 3-7% of the people and does not extend the survival rate.  But Interferon is a personal desision.  Some people feel they must take some action.

                                          My complete lymph node dissection was under arm so it was easier.  The groin appears to be tougher.  You would in all probability get lymphedema.  If you manage it at the first signs you can control it. 

                                          No easy answers.  As for reoccurance….Except for the blue eyes ( I have green) we are the pretty much the same.  I am 2 years 8 months All Clear (NED), multiple primaries are not the rule and hopefully you will have tackled this beast.

                                          Good Luck,

                                          Mary

                                          washoegal
                                          Participant

                                            Hi Colleen, sorry you have joined us.  So many options, unfortunately none of them are very good.  I too am stage 3a.  I chose to have the remainder of my lymph nodes removed (all clear thank goodness) and then to "wait and watch". 

                                            I was offered the ultrasound options also, I declined.   But I did allow an utrasound  before I had the SNLB which showed nothing.  But surprise 2 nodes had microscopic amounts of MEL.  So for my experience ultrasound has limited application. 

                                            I suffer from depression also, that's one big strike against interferon.  It does have some bad side effects but sometimes it is no worse than the flu.  On the other hand it is only effective in 3-7% of the people and does not extend the survival rate.  But Interferon is a personal desision.  Some people feel they must take some action.

                                            My complete lymph node dissection was under arm so it was easier.  The groin appears to be tougher.  You would in all probability get lymphedema.  If you manage it at the first signs you can control it. 

                                            No easy answers.  As for reoccurance….Except for the blue eyes ( I have green) we are the pretty much the same.  I am 2 years 8 months All Clear (NED), multiple primaries are not the rule and hopefully you will have tackled this beast.

                                            Good Luck,

                                            Mary

                                            Charlie S
                                            Participant

                                              This is what I do and have done to make decisions.  I work it out on paper.

                                              First I take a blank sheet, draw a line left to right across the top of the page, then, depending on the number of my choices draw lines from top to bottom; if it is two choices, I drop one line down the middle, if it is  three, I drop two lines and so on.

                                              Then, under each line I drop one more line:  pro and con.  To the left is pro, to the right is con.  I find five reasons for each and assign a +1 for each pro, and an -1 for each con; then I add up the numbers at the bottom.  If it is a tie, I give my "gut feeling" two points.

                                              The reason I do this is that I have learned over 25 years that there is no "one" right answer and this has been a way for me to sort out and quantify my thoughts and emotions in order to make a truly informed medical decision.

                                              This only works with true, self honesty.

                                               

                                              Hope this helps.

                                              Charlie S

                                              Charlie S
                                              Participant

                                                This is what I do and have done to make decisions.  I work it out on paper.

                                                First I take a blank sheet, draw a line left to right across the top of the page, then, depending on the number of my choices draw lines from top to bottom; if it is two choices, I drop one line down the middle, if it is  three, I drop two lines and so on.

                                                Then, under each line I drop one more line:  pro and con.  To the left is pro, to the right is con.  I find five reasons for each and assign a +1 for each pro, and an -1 for each con; then I add up the numbers at the bottom.  If it is a tie, I give my "gut feeling" two points.

                                                The reason I do this is that I have learned over 25 years that there is no "one" right answer and this has been a way for me to sort out and quantify my thoughts and emotions in order to make a truly informed medical decision.

                                                This only works with true, self honesty.

                                                 

                                                Hope this helps.

                                                Charlie S

                                                Charlie S
                                                Participant

                                                  This is what I do and have done to make decisions.  I work it out on paper.

                                                  First I take a blank sheet, draw a line left to right across the top of the page, then, depending on the number of my choices draw lines from top to bottom; if it is two choices, I drop one line down the middle, if it is  three, I drop two lines and so on.

                                                  Then, under each line I drop one more line:  pro and con.  To the left is pro, to the right is con.  I find five reasons for each and assign a +1 for each pro, and an -1 for each con; then I add up the numbers at the bottom.  If it is a tie, I give my "gut feeling" two points.

                                                  The reason I do this is that I have learned over 25 years that there is no "one" right answer and this has been a way for me to sort out and quantify my thoughts and emotions in order to make a truly informed medical decision.

                                                  This only works with true, self honesty.

                                                   

                                                  Hope this helps.

                                                  Charlie S

                                                  alabama girl
                                                  Participant

                                                    I was diagnosed as 3B. It was 9mm deep and micromets in 2 lymph nodes. I had the WLE and only the 2 lymph nodes removed. They then did radiation on the area where the melanoma was found. I am 1 yr NED. I don't understand why there is so many different ways they treat you when you are stage 3. I have CT scans every 3 months and ultrasounds on the lymph nodes every 6 months. This has worked for me. No trials or any type of drugs were even mentioned. Each one of us has to decide for ourselves what we  will allow to be done, but I am glad I didn't have all of my lymph nodes removed. They did say if I had 1 more lymph node involved they would have suggested more treatment. Sorry you are going through this.

                                                    Susan

                                                    alabama girl
                                                    Participant

                                                      I was diagnosed as 3B. It was 9mm deep and micromets in 2 lymph nodes. I had the WLE and only the 2 lymph nodes removed. They then did radiation on the area where the melanoma was found. I am 1 yr NED. I don't understand why there is so many different ways they treat you when you are stage 3. I have CT scans every 3 months and ultrasounds on the lymph nodes every 6 months. This has worked for me. No trials or any type of drugs were even mentioned. Each one of us has to decide for ourselves what we  will allow to be done, but I am glad I didn't have all of my lymph nodes removed. They did say if I had 1 more lymph node involved they would have suggested more treatment. Sorry you are going through this.

                                                      Susan

                                                      alabama girl
                                                      Participant

                                                        I was diagnosed as 3B. It was 9mm deep and micromets in 2 lymph nodes. I had the WLE and only the 2 lymph nodes removed. They then did radiation on the area where the melanoma was found. I am 1 yr NED. I don't understand why there is so many different ways they treat you when you are stage 3. I have CT scans every 3 months and ultrasounds on the lymph nodes every 6 months. This has worked for me. No trials or any type of drugs were even mentioned. Each one of us has to decide for ourselves what we  will allow to be done, but I am glad I didn't have all of my lymph nodes removed. They did say if I had 1 more lymph node involved they would have suggested more treatment. Sorry you are going through this.

                                                        Susan

                                                        Theresa123
                                                        Participant

                                                          Hi, sorry you are with us, Colleen.  I am of Irish ancestry, too, and I have been told that is common.  Interferon is worse than doing nothing.  Believe me.  It makes you very sick and depressed.

                                                          I suggest an anti PD 1 trial. 

                                                          The best therapies are in trials now.  don't go on Zelboraf yet.  some Doctors say it is an end stage drug, and you are not ready for that yet. (if ever).

                                                           

                                                          take care.  I have had Stage IV for 3 years.  I don't know why I am alive since I failed 4 clinical trials.  I am doing nothing now.  Nothing is great if you can manage it.

                                                          take care….

                                                           

                                                          Theresa123
                                                          Participant

                                                            Hi, sorry you are with us, Colleen.  I am of Irish ancestry, too, and I have been told that is common.  Interferon is worse than doing nothing.  Believe me.  It makes you very sick and depressed.

                                                            I suggest an anti PD 1 trial. 

                                                            The best therapies are in trials now.  don't go on Zelboraf yet.  some Doctors say it is an end stage drug, and you are not ready for that yet. (if ever).

                                                             

                                                            take care.  I have had Stage IV for 3 years.  I don't know why I am alive since I failed 4 clinical trials.  I am doing nothing now.  Nothing is great if you can manage it.

                                                            take care….

                                                             

                                                            Theresa123
                                                            Participant

                                                              Hi, sorry you are with us, Colleen.  I am of Irish ancestry, too, and I have been told that is common.  Interferon is worse than doing nothing.  Believe me.  It makes you very sick and depressed.

                                                              I suggest an anti PD 1 trial. 

                                                              The best therapies are in trials now.  don't go on Zelboraf yet.  some Doctors say it is an end stage drug, and you are not ready for that yet. (if ever).

                                                               

                                                              take care.  I have had Stage IV for 3 years.  I don't know why I am alive since I failed 4 clinical trials.  I am doing nothing now.  Nothing is great if you can manage it.

                                                              take care….

                                                               

                                                              Kim41
                                                              Participant

                                                                Hello Colleen, Sorry you are going thru this. I too am 3a with microscopic cells in sentinel node. I chose to have the lymphadenectomy of my left groin. I have some lymph edema and probably always will. It is manageable. I would suggest if you go that route to find a lymphedema specialist. I chose not to do the interferon due to the research I did on it. It was a tough decision for me. You could get in a trial where they do ultrasounds every so often to the groin area and not go thru with the lymph node removals. Charlies advice is always good. Fear is very present at first but it gets better with time. Good luck and keep us informed of your progress. Take care and thinking of you.  Kim

                                                                Kim41
                                                                Participant

                                                                  Hello Colleen, Sorry you are going thru this. I too am 3a with microscopic cells in sentinel node. I chose to have the lymphadenectomy of my left groin. I have some lymph edema and probably always will. It is manageable. I would suggest if you go that route to find a lymphedema specialist. I chose not to do the interferon due to the research I did on it. It was a tough decision for me. You could get in a trial where they do ultrasounds every so often to the groin area and not go thru with the lymph node removals. Charlies advice is always good. Fear is very present at first but it gets better with time. Good luck and keep us informed of your progress. Take care and thinking of you.  Kim

                                                                  Kim41
                                                                  Participant

                                                                    Hello Colleen, Sorry you are going thru this. I too am 3a with microscopic cells in sentinel node. I chose to have the lymphadenectomy of my left groin. I have some lymph edema and probably always will. It is manageable. I would suggest if you go that route to find a lymphedema specialist. I chose not to do the interferon due to the research I did on it. It was a tough decision for me. You could get in a trial where they do ultrasounds every so often to the groin area and not go thru with the lymph node removals. Charlies advice is always good. Fear is very present at first but it gets better with time. Good luck and keep us informed of your progress. Take care and thinking of you.  Kim

                                                                    Colleen66
                                                                    Participant

                                                                      Thank you all for your replies, stories, links and the information.   After many calls to my oncologist, mountains of research and consultations,  I have decided I on the regional lymph node removal.  After gathering more info and talking to my oncologist, they will actually only take the surface nodes, on average 8-10 nodes not the deep pelvic nodes.  this reduces the risk of lymphedema to 15% and they now recommend  instead of pressure stockings, exercise to control it if it happens.  Also, taking the surface nodes will potentially reduce recurrence rate by 15 – 20% and is not a heavy burden on the immune system.  Still some burden but greatly reduced.  I have also decided to have the interferon treatment as my immune system is already fatigued.  

                                                                      The stats I have posted are from the James Cancer And Research Center, part of the Ohio State University Medical Centers.  I feel good about my decision and have my surgery on the 14th of this month and see the Hemotolgist on December 4th.  

                                                                      Sending hugs and best wishes to all, Colleen

                                                                        dian in spokane
                                                                        Participant

                                                                          Colleen,

                                                                          it looks like you've made a decision, which is great, and you've already gotten a lot of great advice. I'd just like to add my 2 cents worth on the side effects of interferon. It's not the physical ones (which can be harsh) but the mental ones that are more of a concern. Bipolor and depressive patients are at a much higher risk with interferon than others. You should make sure you and your doctors have a very tight control on these aspects, and that you are on a reliable and effective anti depressant…even before you start it if possible.

                                                                          People have committed suicide on because of interferon. It's not a side effect to ignore.

                                                                          Good luck with your surgery and recovery!

                                                                           

                                                                          dian

                                                                          Colleen66
                                                                          Participant

                                                                            Dian, 

                                                                            Yes, this is something that I am prepared for.  Not only are my oncologists aware of my condition but I have a psychiatrist and a therapist who are thoroughly informed on my history and we already have a plan in place to deal with this issue. I have dealt with this issue for many years including stays in the hospital and have had ECT treatments.  My Husband and family are also aware of the side effect and I will be watched closely by all involved.

                                                                            I feel I have covered my bases and accept this risk for me and am confident in the plan in place.  

                                                                            Thank you for bringing this up as it is a very real concern for peoples with mental health issues.   Maybe in the future this kind of preparation will be included as a standard in the treatment of cancer.

                                                                            Wishing you well, Colleen

                                                                            Colleen66
                                                                            Participant

                                                                              Dian, 

                                                                              Yes, this is something that I am prepared for.  Not only are my oncologists aware of my condition but I have a psychiatrist and a therapist who are thoroughly informed on my history and we already have a plan in place to deal with this issue. I have dealt with this issue for many years including stays in the hospital and have had ECT treatments.  My Husband and family are also aware of the side effect and I will be watched closely by all involved.

                                                                              I feel I have covered my bases and accept this risk for me and am confident in the plan in place.  

                                                                              Thank you for bringing this up as it is a very real concern for peoples with mental health issues.   Maybe in the future this kind of preparation will be included as a standard in the treatment of cancer.

                                                                              Wishing you well, Colleen

                                                                              Colleen66
                                                                              Participant

                                                                                Dian, 

                                                                                Yes, this is something that I am prepared for.  Not only are my oncologists aware of my condition but I have a psychiatrist and a therapist who are thoroughly informed on my history and we already have a plan in place to deal with this issue. I have dealt with this issue for many years including stays in the hospital and have had ECT treatments.  My Husband and family are also aware of the side effect and I will be watched closely by all involved.

                                                                                I feel I have covered my bases and accept this risk for me and am confident in the plan in place.  

                                                                                Thank you for bringing this up as it is a very real concern for peoples with mental health issues.   Maybe in the future this kind of preparation will be included as a standard in the treatment of cancer.

                                                                                Wishing you well, Colleen

                                                                                dian in spokane
                                                                                Participant

                                                                                  Colleen,

                                                                                  it looks like you've made a decision, which is great, and you've already gotten a lot of great advice. I'd just like to add my 2 cents worth on the side effects of interferon. It's not the physical ones (which can be harsh) but the mental ones that are more of a concern. Bipolor and depressive patients are at a much higher risk with interferon than others. You should make sure you and your doctors have a very tight control on these aspects, and that you are on a reliable and effective anti depressant…even before you start it if possible.

                                                                                  People have committed suicide on because of interferon. It's not a side effect to ignore.

                                                                                  Good luck with your surgery and recovery!

                                                                                   

                                                                                  dian

                                                                                  dian in spokane
                                                                                  Participant

                                                                                    Colleen,

                                                                                    it looks like you've made a decision, which is great, and you've already gotten a lot of great advice. I'd just like to add my 2 cents worth on the side effects of interferon. It's not the physical ones (which can be harsh) but the mental ones that are more of a concern. Bipolor and depressive patients are at a much higher risk with interferon than others. You should make sure you and your doctors have a very tight control on these aspects, and that you are on a reliable and effective anti depressant…even before you start it if possible.

                                                                                    People have committed suicide on because of interferon. It's not a side effect to ignore.

                                                                                    Good luck with your surgery and recovery!

                                                                                     

                                                                                    dian

                                                                                  Colleen66
                                                                                  Participant

                                                                                    Thank you all for your replies, stories, links and the information.   After many calls to my oncologist, mountains of research and consultations,  I have decided I on the regional lymph node removal.  After gathering more info and talking to my oncologist, they will actually only take the surface nodes, on average 8-10 nodes not the deep pelvic nodes.  this reduces the risk of lymphedema to 15% and they now recommend  instead of pressure stockings, exercise to control it if it happens.  Also, taking the surface nodes will potentially reduce recurrence rate by 15 – 20% and is not a heavy burden on the immune system.  Still some burden but greatly reduced.  I have also decided to have the interferon treatment as my immune system is already fatigued.  

                                                                                    The stats I have posted are from the James Cancer And Research Center, part of the Ohio State University Medical Centers.  I feel good about my decision and have my surgery on the 14th of this month and see the Hemotolgist on December 4th.  

                                                                                    Sending hugs and best wishes to all, Colleen

                                                                                    Colleen66
                                                                                    Participant

                                                                                      Thank you all for your replies, stories, links and the information.   After many calls to my oncologist, mountains of research and consultations,  I have decided I on the regional lymph node removal.  After gathering more info and talking to my oncologist, they will actually only take the surface nodes, on average 8-10 nodes not the deep pelvic nodes.  this reduces the risk of lymphedema to 15% and they now recommend  instead of pressure stockings, exercise to control it if it happens.  Also, taking the surface nodes will potentially reduce recurrence rate by 15 – 20% and is not a heavy burden on the immune system.  Still some burden but greatly reduced.  I have also decided to have the interferon treatment as my immune system is already fatigued.  

                                                                                      The stats I have posted are from the James Cancer And Research Center, part of the Ohio State University Medical Centers.  I feel good about my decision and have my surgery on the 14th of this month and see the Hemotolgist on December 4th.  

                                                                                      Sending hugs and best wishes to all, Colleen

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