I’m new. Definitely confused.

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

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

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

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.

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.

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.

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

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

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

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

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

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

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

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

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

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….

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….

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….

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

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

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