newly diagnosed melanoma

Lisa,

In my opinion CLND is not the way to go.  I had one on my right axilla in May of 2015 and am still dealing with the side-effects.  There are immune therapy options that you can read about on this board that offer chances at better results without the surgery.  I got lymphedema from my surgery and have been dealing with that for a year.  Not too bad and rather easy to manage.  I also did radiation on that area.  The worst part of all that my cancer still came back.  It didn't stop recurrence like the immune therapy options can. 

One other huge thing you should consider is removing lymph nodes and lymphedema open you up to high risk for cellulitis.  I spent 5 days in the hospital when that hit me like a Mack truck.  Just last week I woke up to a massive fever and rash on my right arm and all the areas around the dissection site.  It sent me to the ER and according to the doctors was close to getting into my blood.  All of which could be avoided if they didn't convince me to do the CLND last year.  Sorry to be so blunt here, but this last piece is a little fresh in my mind.

Best of luck with your decision,

Brad

Lisa,

In my opinion CLND is not the way to go.  I had one on my right axilla in May of 2015 and am still dealing with the side-effects.  There are immune therapy options that you can read about on this board that offer chances at better results without the surgery.  I got lymphedema from my surgery and have been dealing with that for a year.  Not too bad and rather easy to manage.  I also did radiation on that area.  The worst part of all that my cancer still came back.  It didn't stop recurrence like the immune therapy options can. 

One other huge thing you should consider is removing lymph nodes and lymphedema open you up to high risk for cellulitis.  I spent 5 days in the hospital when that hit me like a Mack truck.  Just last week I woke up to a massive fever and rash on my right arm and all the areas around the dissection site.  It sent me to the ER and according to the doctors was close to getting into my blood.  All of which could be avoided if they didn't convince me to do the CLND last year.  Sorry to be so blunt here, but this last piece is a little fresh in my mind.

Best of luck with your decision,

Brad

Lisa,

In my opinion CLND is not the way to go.  I had one on my right axilla in May of 2015 and am still dealing with the side-effects.  There are immune therapy options that you can read about on this board that offer chances at better results without the surgery.  I got lymphedema from my surgery and have been dealing with that for a year.  Not too bad and rather easy to manage.  I also did radiation on that area.  The worst part of all that my cancer still came back.  It didn't stop recurrence like the immune therapy options can. 

One other huge thing you should consider is removing lymph nodes and lymphedema open you up to high risk for cellulitis.  I spent 5 days in the hospital when that hit me like a Mack truck.  Just last week I woke up to a massive fever and rash on my right arm and all the areas around the dissection site.  It sent me to the ER and according to the doctors was close to getting into my blood.  All of which could be avoided if they didn't convince me to do the CLND last year.  Sorry to be so blunt here, but this last piece is a little fresh in my mind.

Best of luck with your decision,

Brad

Hi Lisa,

Sorry you folks need to go through this.  Yes, there is much debate regarding whether CLND offers long-term benefits or not.  Making that decision may be the hardest part.  The good news is axilla dissection seems to be the least invasive, quickest recovery, along with fewest long-term side effects than the groin, and neck dissections I've read about here.  With that in mind, perhaps the decision may be just a bit easier.  I had the axilla CLND.  Never even took anything for pain, was up and about the next morning, and had only the slightest hint of lymphedema.  The drain coming out of rib cage was by far the least enjoyable part, but that too will pass.  Best in the battle.

Gary

Hi Lisa,

Sorry you folks need to go through this.  Yes, there is much debate regarding whether CLND offers long-term benefits or not.  Making that decision may be the hardest part.  The good news is axilla dissection seems to be the least invasive, quickest recovery, along with fewest long-term side effects than the groin, and neck dissections I've read about here.  With that in mind, perhaps the decision may be just a bit easier.  I had the axilla CLND.  Never even took anything for pain, was up and about the next morning, and had only the slightest hint of lymphedema.  The drain coming out of rib cage was by far the least enjoyable part, but that too will pass.  Best in the battle.

Gary

Hi Lisa,

Sorry you folks need to go through this.  Yes, there is much debate regarding whether CLND offers long-term benefits or not.  Making that decision may be the hardest part.  The good news is axilla dissection seems to be the least invasive, quickest recovery, along with fewest long-term side effects than the groin, and neck dissections I've read about here.  With that in mind, perhaps the decision may be just a bit easier.  I had the axilla CLND.  Never even took anything for pain, was up and about the next morning, and had only the slightest hint of lymphedema.  The drain coming out of rib cage was by far the least enjoyable part, but that too will pass.  Best in the battle.

Gary

That is a tough choice.  The added concern is the fact there is extracapsular extension.  Will it make a difference?  No telling.  Unfortunately the other issue is that he can have the surgery but will still progess to stage IV via blood stream spread.  The next tumor may not show up in his axilla but rather his lung or somewhere else.  Removing the entire basin may not make a difference.

Another option in addition to adjuvant immunotherapy is to monitor the axilla with ultrasound and remove lymphnodes / basin at a later date if there is anything concerning there.

He is now a stage III and can qualify for more therapies.

IMHO, for me, I don't know if the surgery will prevent spread or prolong the time to reoccurance.  I would rather do something systemic seeing as the risk of recurrance beyond the lymph node basin is very real.  If it ain't broke, don't fix it.  Knowing now what I know, and having the time to deal with my disease and getting past the deer in the headlight stage, personally I would not to the CLND but monitor it closely and get some systemic treatement instead.  The risk now is for the rest of the body, not just the axilla.  If you want to be aggressive, do systemic treatment with close monitoring.  That is a major surgery with permanent side effects to one degree or another.

I went from stage 2A to IV without anything stopping by my axilla.  My SNB was negative, it went straight to my lung and pectoral muscle 8 years later.  I am now NED for 6 years due to surgery (lung) and HD IL-2.  I still have all my lymph nodes and appreciate them every day.  I farm and am a veterinarian so am constantly scratching myself on the arms.  The worst cat bites have been to my right hand / arm.  I use and abuse my lymph nodes on a daily basis.

For me, what I understand of the evidence, it may not make a difference in progression and progression at this point involves your whole body.  Mel doesn't spread in a standardized way, at your stage it can pop up anywhere at any time, so why remove the axillary nodes if there is no evidence of disease at this point. Very often at CLND, no other nodes are affected.  You basically removed otherwise healthy lymph nodes that were trying to do their job.  I do understand where your doc is coming from and it is very difficult for them to change from the standard of care, too scary and need more evidence.  Then again, it is your body and you have to live with the aftermath either way.

Tough choice.  Once you make it, NEVER EVER look back on your decision, it only gets in the way of your fight.  Whatever you decide, you will make the decision that is best for you.  You have our support.

Just more food for thought.

Aloha,

Kim

That is a tough choice.  The added concern is the fact there is extracapsular extension.  Will it make a difference?  No telling.  Unfortunately the other issue is that he can have the surgery but will still progess to stage IV via blood stream spread.  The next tumor may not show up in his axilla but rather his lung or somewhere else.  Removing the entire basin may not make a difference.

Another option in addition to adjuvant immunotherapy is to monitor the axilla with ultrasound and remove lymphnodes / basin at a later date if there is anything concerning there.

He is now a stage III and can qualify for more therapies.

IMHO, for me, I don't know if the surgery will prevent spread or prolong the time to reoccurance.  I would rather do something systemic seeing as the risk of recurrance beyond the lymph node basin is very real.  If it ain't broke, don't fix it.  Knowing now what I know, and having the time to deal with my disease and getting past the deer in the headlight stage, personally I would not to the CLND but monitor it closely and get some systemic treatement instead.  The risk now is for the rest of the body, not just the axilla.  If you want to be aggressive, do systemic treatment with close monitoring.  That is a major surgery with permanent side effects to one degree or another.

I went from stage 2A to IV without anything stopping by my axilla.  My SNB was negative, it went straight to my lung and pectoral muscle 8 years later.  I am now NED for 6 years due to surgery (lung) and HD IL-2.  I still have all my lymph nodes and appreciate them every day.  I farm and am a veterinarian so am constantly scratching myself on the arms.  The worst cat bites have been to my right hand / arm.  I use and abuse my lymph nodes on a daily basis.

For me, what I understand of the evidence, it may not make a difference in progression and progression at this point involves your whole body.  Mel doesn't spread in a standardized way, at your stage it can pop up anywhere at any time, so why remove the axillary nodes if there is no evidence of disease at this point. Very often at CLND, no other nodes are affected.  You basically removed otherwise healthy lymph nodes that were trying to do their job.  I do understand where your doc is coming from and it is very difficult for them to change from the standard of care, too scary and need more evidence.  Then again, it is your body and you have to live with the aftermath either way.

Tough choice.  Once you make it, NEVER EVER look back on your decision, it only gets in the way of your fight.  Whatever you decide, you will make the decision that is best for you.  You have our support.

Just more food for thought.

Aloha,

Kim

That is a tough choice.  The added concern is the fact there is extracapsular extension.  Will it make a difference?  No telling.  Unfortunately the other issue is that he can have the surgery but will still progess to stage IV via blood stream spread.  The next tumor may not show up in his axilla but rather his lung or somewhere else.  Removing the entire basin may not make a difference.

Another option in addition to adjuvant immunotherapy is to monitor the axilla with ultrasound and remove lymphnodes / basin at a later date if there is anything concerning there.

He is now a stage III and can qualify for more therapies.

IMHO, for me, I don't know if the surgery will prevent spread or prolong the time to reoccurance.  I would rather do something systemic seeing as the risk of recurrance beyond the lymph node basin is very real.  If it ain't broke, don't fix it.  Knowing now what I know, and having the time to deal with my disease and getting past the deer in the headlight stage, personally I would not to the CLND but monitor it closely and get some systemic treatement instead.  The risk now is for the rest of the body, not just the axilla.  If you want to be aggressive, do systemic treatment with close monitoring.  That is a major surgery with permanent side effects to one degree or another.

I went from stage 2A to IV without anything stopping by my axilla.  My SNB was negative, it went straight to my lung and pectoral muscle 8 years later.  I am now NED for 6 years due to surgery (lung) and HD IL-2.  I still have all my lymph nodes and appreciate them every day.  I farm and am a veterinarian so am constantly scratching myself on the arms.  The worst cat bites have been to my right hand / arm.  I use and abuse my lymph nodes on a daily basis.

For me, what I understand of the evidence, it may not make a difference in progression and progression at this point involves your whole body.  Mel doesn't spread in a standardized way, at your stage it can pop up anywhere at any time, so why remove the axillary nodes if there is no evidence of disease at this point. Very often at CLND, no other nodes are affected.  You basically removed otherwise healthy lymph nodes that were trying to do their job.  I do understand where your doc is coming from and it is very difficult for them to change from the standard of care, too scary and need more evidence.  Then again, it is your body and you have to live with the aftermath either way.

Tough choice.  Once you make it, NEVER EVER look back on your decision, it only gets in the way of your fight.  Whatever you decide, you will make the decision that is best for you.  You have our support.

Just more food for thought.

Aloha,

Kim

Sorry for what you and your husband are dealing with. I have had two complete lymph node dissections – one to each arm pit and have never had lymphedema or too many other problems…though others are not so lucky. Here is a post that contains a lot of data from studies addressing the pros and cons of doing the CLND.  

Here is a link with other links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html

Perhaps the data will be helpful in making your decision. Decisons are personal. I agree that once you've made yours, see a melanoma specialist, make a plan of follow up with your husband….and….LIVE!

Celeste

Sorry for what you and your husband are dealing with. I have had two complete lymph node dissections – one to each arm pit and have never had lymphedema or too many other problems…though others are not so lucky. Here is a post that contains a lot of data from studies addressing the pros and cons of doing the CLND.  

Here is a link with other links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html

Perhaps the data will be helpful in making your decision. Decisons are personal. I agree that once you've made yours, see a melanoma specialist, make a plan of follow up with your husband….and….LIVE!

Celeste

Sorry for what you and your husband are dealing with. I have had two complete lymph node dissections – one to each arm pit and have never had lymphedema or too many other problems…though others are not so lucky. Here is a post that contains a lot of data from studies addressing the pros and cons of doing the CLND.  

Here is a link with other links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html

Perhaps the data will be helpful in making your decision. Decisons are personal. I agree that once you've made yours, see a melanoma specialist, make a plan of follow up with your husband….and….LIVE!

Celeste