CLND or Observation for Stage 3A?

Hi there,

Personally I would not feel comfortable with wait and watch, melanoma is a devious cancer. Admittedly I have not ever had melanoma, my father has it and I've been lurking on this board since his diagnosis in Dec 2010 educating myself about this disease.

I have no doubt this surgery is major, but if my doctor (assuming he/she is a melanoma specialist) recommended the CLND, I would listen to their advice. Maybe the chances of finding any further positive nodes are in the percentage range mentioned, but I wouldn't be comfortable about leaving it. 

If there is further cancer cells in there, at least this way you know they got in there and got them (there's no guarantees with melanoma) and there will be some peace of mind.

Wait and watch, seems like a big gamble to me.

Just my thoughts.

Nahmi from Melbourne

Hi there,

Personally I would not feel comfortable with wait and watch, melanoma is a devious cancer. Admittedly I have not ever had melanoma, my father has it and I've been lurking on this board since his diagnosis in Dec 2010 educating myself about this disease.

I have no doubt this surgery is major, but if my doctor (assuming he/she is a melanoma specialist) recommended the CLND, I would listen to their advice. Maybe the chances of finding any further positive nodes are in the percentage range mentioned, but I wouldn't be comfortable about leaving it. 

If there is further cancer cells in there, at least this way you know they got in there and got them (there's no guarantees with melanoma) and there will be some peace of mind.

Wait and watch, seems like a big gamble to me.

Just my thoughts.

Nahmi from Melbourne

Hi there,

Personally I would not feel comfortable with wait and watch, melanoma is a devious cancer. Admittedly I have not ever had melanoma, my father has it and I've been lurking on this board since his diagnosis in Dec 2010 educating myself about this disease.

I have no doubt this surgery is major, but if my doctor (assuming he/she is a melanoma specialist) recommended the CLND, I would listen to their advice. Maybe the chances of finding any further positive nodes are in the percentage range mentioned, but I wouldn't be comfortable about leaving it. 

If there is further cancer cells in there, at least this way you know they got in there and got them (there's no guarantees with melanoma) and there will be some peace of mind.

Wait and watch, seems like a big gamble to me.

Just my thoughts.

Nahmi from Melbourne

Don't take ANY chances.  My husband had about 35 nodes removed from his neck, one of which was positive, on May 8.  Because of a complication with a lung that eventually was diagnosed as a new primary cancer, radiation has been delayed. He was doing fine.   He woke up Sunday morning with a chain of lumps on his neck and a big swelling.  A biopsy has been taken but they think the melanoma has spread to his skin (he has mucosal melanoma of the nasal cavity). More surgery is not an option because it is so wide spread. These things literally showed up overnight. We had even seen a doctor the week before and his neck was checked.  Now they're rethinking the whole treatment plan and it's all up in the air.  Get that surgery done as soon as possible and don't think twice about it. 

Don't take ANY chances.  My husband had about 35 nodes removed from his neck, one of which was positive, on May 8.  Because of a complication with a lung that eventually was diagnosed as a new primary cancer, radiation has been delayed. He was doing fine.   He woke up Sunday morning with a chain of lumps on his neck and a big swelling.  A biopsy has been taken but they think the melanoma has spread to his skin (he has mucosal melanoma of the nasal cavity). More surgery is not an option because it is so wide spread. These things literally showed up overnight. We had even seen a doctor the week before and his neck was checked.  Now they're rethinking the whole treatment plan and it's all up in the air.  Get that surgery done as soon as possible and don't think twice about it. 

Don't take ANY chances.  My husband had about 35 nodes removed from his neck, one of which was positive, on May 8.  Because of a complication with a lung that eventually was diagnosed as a new primary cancer, radiation has been delayed. He was doing fine.   He woke up Sunday morning with a chain of lumps on his neck and a big swelling.  A biopsy has been taken but they think the melanoma has spread to his skin (he has mucosal melanoma of the nasal cavity). More surgery is not an option because it is so wide spread. These things literally showed up overnight. We had even seen a doctor the week before and his neck was checked.  Now they're rethinking the whole treatment plan and it's all up in the air.  Get that surgery done as soon as possible and don't think twice about it. 

I would get a second opinion before continuing-at a melanoma center.

Having all of your lymph nodes removed for micromets in one node is controversial. There are studies that are looking at this issue. Some surgeons will do a partial dissection instead. I would inquire about that as full node dissection can leave you with a lot of residual problems.

I would get a second opinion before continuing-at a melanoma center.

Having all of your lymph nodes removed for micromets in one node is controversial. There are studies that are looking at this issue. Some surgeons will do a partial dissection instead. I would inquire about that as full node dissection can leave you with a lot of residual problems.

I would get a second opinion before continuing-at a melanoma center.

Having all of your lymph nodes removed for micromets in one node is controversial. There are studies that are looking at this issue. Some surgeons will do a partial dissection instead. I would inquire about that as full node dissection can leave you with a lot of residual problems.

Another option being studied for people in this situation involves periodic ultrasound screenings instead of the LND.  I know this has been in a clinical trial for some time now, but I have never seen results published.  The majority of people in your situation have at least the superficial nodes removed – but that doesn't mean there aren't other valid options.  Do your research until YOU are comfortable with the treatment.

Another option being studied for people in this situation involves periodic ultrasound screenings instead of the LND.  I know this has been in a clinical trial for some time now, but I have never seen results published.  The majority of people in your situation have at least the superficial nodes removed – but that doesn't mean there aren't other valid options.  Do your research until YOU are comfortable with the treatment.

Another option being studied for people in this situation involves periodic ultrasound screenings instead of the LND.  I know this has been in a clinical trial for some time now, but I have never seen results published.  The majority of people in your situation have at least the superficial nodes removed – but that doesn't mean there aren't other valid options.  Do your research until YOU are comfortable with the treatment.

Get the surgery.I had s very small birthmark from the neck removed that was in todays staging a stage 1 in 2001.Assured at that time that no additional treatment needed.What a mistake.Feb. of 2011 it came back and was caught too late and I am now stage 4 in the fight of my life.DO IT. In my prayers that you will not be on this forum much longer .Beat the Beast.  Al

Get the surgery.I had s very small birthmark from the neck removed that was in todays staging a stage 1 in 2001.Assured at that time that no additional treatment needed.What a mistake.Feb. of 2011 it came back and was caught too late and I am now stage 4 in the fight of my life.DO IT. In my prayers that you will not be on this forum much longer .Beat the Beast.  Al

Get the surgery.I had s very small birthmark from the neck removed that was in todays staging a stage 1 in 2001.Assured at that time that no additional treatment needed.What a mistake.Feb. of 2011 it came back and was caught too late and I am now stage 4 in the fight of my life.DO IT. In my prayers that you will not be on this forum much longer .Beat the Beast.  Al

One thing to consider…most clinical trials for stage 3 NED want people to have a CLND before entering a new trial.  For example, this new one requires that you enter it 90 days after surgery http://www.clinicaltrials.gov/ct2/show/NCT01546571?term=POL-103A&rank=1

My husband is stage 3a – 3 years NED – scans this month or next…he had a CLND of the axilla with micromets.  It takes a while to heal but he has very few issues (a bit of nerve damage on the back of his arm).  Our doc said surgery gives slightly better results than not having it…but that is what surgeons say – so I would recommend researching it a bit if you really are against it. 

Take care!

Emily

One thing to consider…most clinical trials for stage 3 NED want people to have a CLND before entering a new trial.  For example, this new one requires that you enter it 90 days after surgery http://www.clinicaltrials.gov/ct2/show/NCT01546571?term=POL-103A&rank=1

My husband is stage 3a – 3 years NED – scans this month or next…he had a CLND of the axilla with micromets.  It takes a while to heal but he has very few issues (a bit of nerve damage on the back of his arm).  Our doc said surgery gives slightly better results than not having it…but that is what surgeons say – so I would recommend researching it a bit if you really are against it. 

Take care!

Emily

One thing to consider…most clinical trials for stage 3 NED want people to have a CLND before entering a new trial.  For example, this new one requires that you enter it 90 days after surgery http://www.clinicaltrials.gov/ct2/show/NCT01546571?term=POL-103A&rank=1

My husband is stage 3a – 3 years NED – scans this month or next…he had a CLND of the axilla with micromets.  It takes a while to heal but he has very few issues (a bit of nerve damage on the back of his arm).  Our doc said surgery gives slightly better results than not having it…but that is what surgeons say – so I would recommend researching it a bit if you really are against it. 

Take care!

Emily

Hi Steve,

I am new to all this myself (diagnosed on on 6/7/12 with a 1.3mm, Level 4 on my scalp, and staged IIIa following a sentinal node biopsy on 7/3/12).

There is currently a clinical trial underway here in Seattle (the MSL2 trial) whose aim is to determine if a CLND has any benefit. It is currently the standard of care for stage IIIa. The only other approved adjuvant treatment is Interferon.

My oncologist at Fred Hutch (a melanoma specialist) doesn't even think there may be any benefit to removing positive nodes. The problem is that there is no data to suggest that resection improves our odds. That is not to say that it is not beneficial, there is just a lack of data to support it one way or another. It is a radical viewpoint, since my first reaction would be to remove any detectable disease. I had to wait almost a month from the time I was diagnosed until my wide (local) ara excision and the whole time I was thinking "what if the cancer spreads to a node while I am waiting?". After the sentinal node biopsy one of two nodes removed was found to have a micro-metastis. I asked 3 different oncologists after that if they thought having the excision performed sooner would have resulted in a better outcome and none of them thought so.

The bottom line is that melanoma is so unpredictable and at this point there is a lack of data to know the best way to proceed.

I chose to forgo both the CLND and Interferon but instead I am pursuing a clinical trial, the GVAX trial at Hopkins. Part of that was because I have nerve damage from the excision and sentinel node biopsy (part of my ear is numb and a portion of my scalp). There was a risk of facial paralysis, a weak and drooping sholder, and of course lymphadema from the CLND.

I just got back from Hopkins on Thursday. Insurance has declined to pay the costs related to the trial (the scans are the most expensive part) and the travel from Seattle to Baltimore is not cheap but this trial seems to be the most hopeful one I have been able to find (check out the J1112 tial GVAX trial at Johns Hopkins. I tried to include a link to it but it triggered this site's spam filter.

– Paul

Hi Steve,

I am new to all this myself (diagnosed on on 6/7/12 with a 1.3mm, Level 4 on my scalp, and staged IIIa following a sentinal node biopsy on 7/3/12).

There is currently a clinical trial underway here in Seattle (the MSL2 trial) whose aim is to determine if a CLND has any benefit. It is currently the standard of care for stage IIIa. The only other approved adjuvant treatment is Interferon.

My oncologist at Fred Hutch (a melanoma specialist) doesn't even think there may be any benefit to removing positive nodes. The problem is that there is no data to suggest that resection improves our odds. That is not to say that it is not beneficial, there is just a lack of data to support it one way or another. It is a radical viewpoint, since my first reaction would be to remove any detectable disease. I had to wait almost a month from the time I was diagnosed until my wide (local) ara excision and the whole time I was thinking "what if the cancer spreads to a node while I am waiting?". After the sentinal node biopsy one of two nodes removed was found to have a micro-metastis. I asked 3 different oncologists after that if they thought having the excision performed sooner would have resulted in a better outcome and none of them thought so.

The bottom line is that melanoma is so unpredictable and at this point there is a lack of data to know the best way to proceed.

I chose to forgo both the CLND and Interferon but instead I am pursuing a clinical trial, the GVAX trial at Hopkins. Part of that was because I have nerve damage from the excision and sentinel node biopsy (part of my ear is numb and a portion of my scalp). There was a risk of facial paralysis, a weak and drooping sholder, and of course lymphadema from the CLND.

I just got back from Hopkins on Thursday. Insurance has declined to pay the costs related to the trial (the scans are the most expensive part) and the travel from Seattle to Baltimore is not cheap but this trial seems to be the most hopeful one I have been able to find (check out the J1112 tial GVAX trial at Johns Hopkins. I tried to include a link to it but it triggered this site's spam filter.

– Paul

Hi Steve,

I am new to all this myself (diagnosed on on 6/7/12 with a 1.3mm, Level 4 on my scalp, and staged IIIa following a sentinal node biopsy on 7/3/12).

There is currently a clinical trial underway here in Seattle (the MSL2 trial) whose aim is to determine if a CLND has any benefit. It is currently the standard of care for stage IIIa. The only other approved adjuvant treatment is Interferon.

My oncologist at Fred Hutch (a melanoma specialist) doesn't even think there may be any benefit to removing positive nodes. The problem is that there is no data to suggest that resection improves our odds. That is not to say that it is not beneficial, there is just a lack of data to support it one way or another. It is a radical viewpoint, since my first reaction would be to remove any detectable disease. I had to wait almost a month from the time I was diagnosed until my wide (local) ara excision and the whole time I was thinking "what if the cancer spreads to a node while I am waiting?". After the sentinal node biopsy one of two nodes removed was found to have a micro-metastis. I asked 3 different oncologists after that if they thought having the excision performed sooner would have resulted in a better outcome and none of them thought so.

The bottom line is that melanoma is so unpredictable and at this point there is a lack of data to know the best way to proceed.

I chose to forgo both the CLND and Interferon but instead I am pursuing a clinical trial, the GVAX trial at Hopkins. Part of that was because I have nerve damage from the excision and sentinel node biopsy (part of my ear is numb and a portion of my scalp). There was a risk of facial paralysis, a weak and drooping sholder, and of course lymphadema from the CLND.

I just got back from Hopkins on Thursday. Insurance has declined to pay the costs related to the trial (the scans are the most expensive part) and the travel from Seattle to Baltimore is not cheap but this trial seems to be the most hopeful one I have been able to find (check out the J1112 tial GVAX trial at Johns Hopkins. I tried to include a link to it but it triggered this site's spam filter.

– Paul