› Forums › General Melanoma Community › Recently diagnosed with stage 3a…questions on treatment
- This topic has 33 replies, 11 voices, and was last updated 8 years, 11 months ago by amelanomajourney.
- Post
-
- May 16, 2015 at 1:03 pm
Hello all. What a wonderful community this is. I wish I hadn't waited so long to register. I've only read a few threads, and I already feel encouraged by the stories of survival here. My melanoma story starts less than 3 weeks ago, but it's been such a long 2.5 weeks that it feels more like months.
I'm a 31-year-old male, and I was diagnosed with melanoma on my left calf on April 29th. My tumor was 1.6 mm thick, no ulceration, a mitotic rate of 1, and a Clark level of IV. My doc said I only had a 15% chance of spread to my sentinel lymph nodes. My wide local excision and sentinel lymph node biopsy was 3 days ago. Unfortunately, luck wasn't on my side, and my sentinel lymph node (inguinal) was positive for cancer. She only removed one node. Two lit up on the lymph node study, but the second was at a deeper lymph node basin.
In my node, it's only microscopic disease (she said about 0.5 mm), and there is no extracapsular extension. She thinks it's highly unlikely that it has spread to any of my other regional lymph nodes. However, and she warned me this was controversial, the standard of care will still be to do a complete dissection of my groin lymph nodes. Afterward, I'll probably be able to link up with a clinical trial (it's a research hospital) to boost my immune response against the cancer.
I'm a scientist myself, so I have been reading clinical studies, and I see how lymph node dissection doesn't improve survival at all. What have your experiences been? I'm wondering if I should try to skip the node dissection and go straight to the clinical trials. I am all about aggressive treatment, but it seems like the lymph node dissection has few positive benefits in my case (since I have no extracapsular extenstion) while greatly increasing the risk of surgical complications.
I know the standard of care is limited until research identifies a better solution, but does anyone know if the standard of care is changing at some places around the country?
Thanks and God bless!
- Replies
-
-
- May 16, 2015 at 2:16 pm
Read the clinical studies criteria because some may require the full dissection. It is still the standard protocol despite the lack of overall survival benefit. If you can get into an immunotherapy trial without the dissection, I think that's a very viable option. Good luck.
-
- May 16, 2015 at 2:16 pm
Read the clinical studies criteria because some may require the full dissection. It is still the standard protocol despite the lack of overall survival benefit. If you can get into an immunotherapy trial without the dissection, I think that's a very viable option. Good luck.
-
- May 16, 2015 at 2:16 pm
Read the clinical studies criteria because some may require the full dissection. It is still the standard protocol despite the lack of overall survival benefit. If you can get into an immunotherapy trial without the dissection, I think that's a very viable option. Good luck.
-
- May 16, 2015 at 4:01 pm
For Janner and Never Gonna Stop:
Actually, there are some studies that demonstrate improved survival due to sentinal node removal!!!!
From: New England Journal of Medicine, Faries and Balch.
"In the study's biopsy group, sentinel node results were the most important predictor for 10-year survival…in patients whose melanoma lesion was considered thick or intermediate. Disease free survival rates over 10 years were significantly better in the biopsy group in patients with intermediate lesion depth (71% vs 65% in the observation group) and at rates of (51% vs 41%) in patients with thick melanoma lesions."
Now, the caveat here is whether your lesion falls in an intermediate or thick category. Here is a post that discussed the entire article: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html
For NGS: What one decides to do as their cancer care is ultimately very personal with no absolute, clear answers…especially when it comes to melanoma. Here is another post re: studies that tried to determine risk of future lesions based on characteristics demonstrated in the primary lesion that might have some relevance for you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html
Janner is correct that if you want to get into an NED (No evidence of disease) trial and have already had a positive node…they may require you to have a complete resection. Then again, what is termed "minimal residual disease" (there is no clear definition of what this means and is usually determined by the trial or researcher) is occasionally allowed.
Here is a post regarding NED trial options if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
Hope this helps. I wish you my best. celeste
-
- May 16, 2015 at 4:01 pm
For Janner and Never Gonna Stop:
Actually, there are some studies that demonstrate improved survival due to sentinal node removal!!!!
From: New England Journal of Medicine, Faries and Balch.
"In the study's biopsy group, sentinel node results were the most important predictor for 10-year survival…in patients whose melanoma lesion was considered thick or intermediate. Disease free survival rates over 10 years were significantly better in the biopsy group in patients with intermediate lesion depth (71% vs 65% in the observation group) and at rates of (51% vs 41%) in patients with thick melanoma lesions."
Now, the caveat here is whether your lesion falls in an intermediate or thick category. Here is a post that discussed the entire article: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html
For NGS: What one decides to do as their cancer care is ultimately very personal with no absolute, clear answers…especially when it comes to melanoma. Here is another post re: studies that tried to determine risk of future lesions based on characteristics demonstrated in the primary lesion that might have some relevance for you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html
Janner is correct that if you want to get into an NED (No evidence of disease) trial and have already had a positive node…they may require you to have a complete resection. Then again, what is termed "minimal residual disease" (there is no clear definition of what this means and is usually determined by the trial or researcher) is occasionally allowed.
Here is a post regarding NED trial options if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
Hope this helps. I wish you my best. celeste
-
- May 16, 2015 at 4:01 pm
For Janner and Never Gonna Stop:
Actually, there are some studies that demonstrate improved survival due to sentinal node removal!!!!
From: New England Journal of Medicine, Faries and Balch.
"In the study's biopsy group, sentinel node results were the most important predictor for 10-year survival…in patients whose melanoma lesion was considered thick or intermediate. Disease free survival rates over 10 years were significantly better in the biopsy group in patients with intermediate lesion depth (71% vs 65% in the observation group) and at rates of (51% vs 41%) in patients with thick melanoma lesions."
Now, the caveat here is whether your lesion falls in an intermediate or thick category. Here is a post that discussed the entire article: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html
For NGS: What one decides to do as their cancer care is ultimately very personal with no absolute, clear answers…especially when it comes to melanoma. Here is another post re: studies that tried to determine risk of future lesions based on characteristics demonstrated in the primary lesion that might have some relevance for you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html
Janner is correct that if you want to get into an NED (No evidence of disease) trial and have already had a positive node…they may require you to have a complete resection. Then again, what is termed "minimal residual disease" (there is no clear definition of what this means and is usually determined by the trial or researcher) is occasionally allowed.
Here is a post regarding NED trial options if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
Hope this helps. I wish you my best. celeste
-
- May 16, 2015 at 4:45 pm
Janner and Celeste know way better than me about that stuff. All I would like to add is when you look at trials at stage 3 you might want to put the yervoy vs pd1 trial at the top of your list.
Artie
-
- May 16, 2015 at 4:45 pm
Janner and Celeste know way better than me about that stuff. All I would like to add is when you look at trials at stage 3 you might want to put the yervoy vs pd1 trial at the top of your list.
Artie
-
- May 16, 2015 at 4:45 pm
Janner and Celeste know way better than me about that stuff. All I would like to add is when you look at trials at stage 3 you might want to put the yervoy vs pd1 trial at the top of your list.
Artie
-
- May 16, 2015 at 5:08 pm
I was in a similar situation as you are about a year and A half ago. Diagnosed at 29. When I was looking for trials, I wasn’t finding any that would allow a stage 3a with no other evidence of disease…. however, everything in the melanoma world is rapidly chaning, so that may not be the case now. Outside is dissection v no dissection, it would pwrsonally make me nervous to have essentially another sentinel node that wasn’t removed. Also, I would think your next step before making decisions would be a full body PET / CT scan. -
- May 16, 2015 at 5:08 pm
I was in a similar situation as you are about a year and A half ago. Diagnosed at 29. When I was looking for trials, I wasn’t finding any that would allow a stage 3a with no other evidence of disease…. however, everything in the melanoma world is rapidly chaning, so that may not be the case now. Outside is dissection v no dissection, it would pwrsonally make me nervous to have essentially another sentinel node that wasn’t removed. Also, I would think your next step before making decisions would be a full body PET / CT scan. -
- May 16, 2015 at 5:08 pm
I was in a similar situation as you are about a year and A half ago. Diagnosed at 29. When I was looking for trials, I wasn’t finding any that would allow a stage 3a with no other evidence of disease…. however, everything in the melanoma world is rapidly chaning, so that may not be the case now. Outside is dissection v no dissection, it would pwrsonally make me nervous to have essentially another sentinel node that wasn’t removed. Also, I would think your next step before making decisions would be a full body PET / CT scan. -
- May 17, 2015 at 1:13 am
I just have to say that I don't know if I would trust the SNL biopsy to be 100% accurate. My daughter's melanoma was on her neck and I understand that can be a trickier area to determine the SNL, however, she had 2 lymph nodes removed that were below the melanoma and they were both negative. They were the ones that lit up and had the blue dye so that should have been that. Within 2 weeks a lymph node that was above the original melanoma started to become enlarged. Fine needle biopsy showed melanoma. Ended up doing lymph node dissection and no other tissue or lymph nodes were positive. Did they miss the SNL or was it a local metastasis? No one seems to know. She completed 3 rounds of biochemothereapy which is, I believe, sort of an outdated treatment and really harsh on the body. Her original melanoma was deep so we were so glad to be offered a systemic treatment which was unusual for stage III. She is now 2 years NED. Do what feels right for you but remember statistics are just numbers.
-
- May 17, 2015 at 1:13 am
I just have to say that I don't know if I would trust the SNL biopsy to be 100% accurate. My daughter's melanoma was on her neck and I understand that can be a trickier area to determine the SNL, however, she had 2 lymph nodes removed that were below the melanoma and they were both negative. They were the ones that lit up and had the blue dye so that should have been that. Within 2 weeks a lymph node that was above the original melanoma started to become enlarged. Fine needle biopsy showed melanoma. Ended up doing lymph node dissection and no other tissue or lymph nodes were positive. Did they miss the SNL or was it a local metastasis? No one seems to know. She completed 3 rounds of biochemothereapy which is, I believe, sort of an outdated treatment and really harsh on the body. Her original melanoma was deep so we were so glad to be offered a systemic treatment which was unusual for stage III. She is now 2 years NED. Do what feels right for you but remember statistics are just numbers.
-
- May 17, 2015 at 1:13 am
I just have to say that I don't know if I would trust the SNL biopsy to be 100% accurate. My daughter's melanoma was on her neck and I understand that can be a trickier area to determine the SNL, however, she had 2 lymph nodes removed that were below the melanoma and they were both negative. They were the ones that lit up and had the blue dye so that should have been that. Within 2 weeks a lymph node that was above the original melanoma started to become enlarged. Fine needle biopsy showed melanoma. Ended up doing lymph node dissection and no other tissue or lymph nodes were positive. Did they miss the SNL or was it a local metastasis? No one seems to know. She completed 3 rounds of biochemothereapy which is, I believe, sort of an outdated treatment and really harsh on the body. Her original melanoma was deep so we were so glad to be offered a systemic treatment which was unusual for stage III. She is now 2 years NED. Do what feels right for you but remember statistics are just numbers.
-
- May 17, 2015 at 4:21 am
In your situation I wouldnt get a full groin dissection.
There were a couple of studies i read that talked exactly about people in your situation and they had just as good a survival as people who had clear SNBs.
In fact I opted not to get a full groin dissection and I had two lymph nodes with small amounts of melanoma. I certainly havent regretted it at all.
You just need to monitor by ultrasound. If you are clear on three monthly checks then i would just keep on living my life and leave the subject of trials if and when i needed them to a later date.
Overall the research is inconclusive when it comes to whether or not a full groin dissection improves survival. And most importantlly you need to look at quality of life as the operation is very tough and long term complications are not uncommon and still the statistics show that the majority of people still go on to recurrence even having had the full groin dissection.
-
- May 17, 2015 at 4:21 am
In your situation I wouldnt get a full groin dissection.
There were a couple of studies i read that talked exactly about people in your situation and they had just as good a survival as people who had clear SNBs.
In fact I opted not to get a full groin dissection and I had two lymph nodes with small amounts of melanoma. I certainly havent regretted it at all.
You just need to monitor by ultrasound. If you are clear on three monthly checks then i would just keep on living my life and leave the subject of trials if and when i needed them to a later date.
Overall the research is inconclusive when it comes to whether or not a full groin dissection improves survival. And most importantlly you need to look at quality of life as the operation is very tough and long term complications are not uncommon and still the statistics show that the majority of people still go on to recurrence even having had the full groin dissection.
-
- May 17, 2015 at 4:21 am
In your situation I wouldnt get a full groin dissection.
There were a couple of studies i read that talked exactly about people in your situation and they had just as good a survival as people who had clear SNBs.
In fact I opted not to get a full groin dissection and I had two lymph nodes with small amounts of melanoma. I certainly havent regretted it at all.
You just need to monitor by ultrasound. If you are clear on three monthly checks then i would just keep on living my life and leave the subject of trials if and when i needed them to a later date.
Overall the research is inconclusive when it comes to whether or not a full groin dissection improves survival. And most importantlly you need to look at quality of life as the operation is very tough and long term complications are not uncommon and still the statistics show that the majority of people still go on to recurrence even having had the full groin dissection.
-
- May 17, 2015 at 3:23 pm
My story started out very similar to yours except the melanoma was on my scalp. 1.3mm and SLNB showed one of two sentinel nodes with microscopic disease. I too was presented with the option of an CLND and also because Seattle is part of the very large MSLT-2 trial which I believe is trying to answer just that question as to the efficacy of CLND was asked to consider participating in the trial (https://clinicaltrials.gov/ct2/show/NCT00297895?term=mslt&state1=NA%3AUS%3AWA&rank=2).
I considered:
that even with a CLND, all it takes is a single cell hiding in tissue or even elsewhere in the lymphatic system,
quality of life following a CLND,
knowing that it was all just best-guesswork regardless
that I ultimately decided to go without the CLND. In spite of that I still had two local recurrences and still advanced to Stage 4. Would I still be at Stage 3 today if I had done the CLND? No way to answer that. That is why most people on this board will say make a decision and don't look back, don't double guess yourself.
I do know that the informed opinions I found here have helped me a lot with my decision making.
Good luck! – Paul
-
- May 17, 2015 at 3:23 pm
My story started out very similar to yours except the melanoma was on my scalp. 1.3mm and SLNB showed one of two sentinel nodes with microscopic disease. I too was presented with the option of an CLND and also because Seattle is part of the very large MSLT-2 trial which I believe is trying to answer just that question as to the efficacy of CLND was asked to consider participating in the trial (https://clinicaltrials.gov/ct2/show/NCT00297895?term=mslt&state1=NA%3AUS%3AWA&rank=2).
I considered:
that even with a CLND, all it takes is a single cell hiding in tissue or even elsewhere in the lymphatic system,
quality of life following a CLND,
knowing that it was all just best-guesswork regardless
that I ultimately decided to go without the CLND. In spite of that I still had two local recurrences and still advanced to Stage 4. Would I still be at Stage 3 today if I had done the CLND? No way to answer that. That is why most people on this board will say make a decision and don't look back, don't double guess yourself.
I do know that the informed opinions I found here have helped me a lot with my decision making.
Good luck! – Paul
-
- May 17, 2015 at 3:23 pm
My story started out very similar to yours except the melanoma was on my scalp. 1.3mm and SLNB showed one of two sentinel nodes with microscopic disease. I too was presented with the option of an CLND and also because Seattle is part of the very large MSLT-2 trial which I believe is trying to answer just that question as to the efficacy of CLND was asked to consider participating in the trial (https://clinicaltrials.gov/ct2/show/NCT00297895?term=mslt&state1=NA%3AUS%3AWA&rank=2).
I considered:
that even with a CLND, all it takes is a single cell hiding in tissue or even elsewhere in the lymphatic system,
quality of life following a CLND,
knowing that it was all just best-guesswork regardless
that I ultimately decided to go without the CLND. In spite of that I still had two local recurrences and still advanced to Stage 4. Would I still be at Stage 3 today if I had done the CLND? No way to answer that. That is why most people on this board will say make a decision and don't look back, don't double guess yourself.
I do know that the informed opinions I found here have helped me a lot with my decision making.
Good luck! – Paul
-
- May 17, 2015 at 10:53 pm
I suggest doing the complete lymph node dissection. Why not just get it all? My melanoma was 3.1mm calf lesion (Clark's IV) with 2 positive groin nodes. The surgeon just removed them all right then at the same time as the sentinel node biopsy and wide excision of the calf lesion. I am very grateful for this surgeon. This was 14 years ago, protocol may have been different. I only tolerated 8 or 9 doses of Interferon and have had no other treatment. I have also had no recurrences!
Sending positive, healing thoughts your way,
Cynthia C
-
- May 17, 2015 at 10:53 pm
I suggest doing the complete lymph node dissection. Why not just get it all? My melanoma was 3.1mm calf lesion (Clark's IV) with 2 positive groin nodes. The surgeon just removed them all right then at the same time as the sentinel node biopsy and wide excision of the calf lesion. I am very grateful for this surgeon. This was 14 years ago, protocol may have been different. I only tolerated 8 or 9 doses of Interferon and have had no other treatment. I have also had no recurrences!
Sending positive, healing thoughts your way,
Cynthia C
-
- May 17, 2015 at 10:53 pm
I suggest doing the complete lymph node dissection. Why not just get it all? My melanoma was 3.1mm calf lesion (Clark's IV) with 2 positive groin nodes. The surgeon just removed them all right then at the same time as the sentinel node biopsy and wide excision of the calf lesion. I am very grateful for this surgeon. This was 14 years ago, protocol may have been different. I only tolerated 8 or 9 doses of Interferon and have had no other treatment. I have also had no recurrences!
Sending positive, healing thoughts your way,
Cynthia C
-
- May 20, 2015 at 12:49 pm
Hi "Never going to stop". I justed wanted to add to what has been talked about already. I watched a video last year on (OncLive) with Dr. Mario Sznol M.D. as the moderator, with a panel including surgeons and Oncologist and in the video series the panel in episode 3 talks about Lymph node Management in Melanoma. The panel talks aboout Lymph node dissection (CLND) following a positive sentinel lymph node(SLN). It is very interesting to hear what Dr.s from different hospital use as guide lines. It is very informative as well to get a small glimpse into the thinking of surgeons who many see first before every meeting with a Oncologist. During the talk Dr. Sznol makes a reference to the possible importance to keeping the Lymph nodes. He doesn't go into detail but I believe he is talking about in Immunotherapy the T-cells are so important in the process of attacking the cancer, so if you take away Lymph nodes you are taking away the factory where they are being manufactured. To watch the video on Onclive you need to join (free) then hit the Melanoma title left column of page. You then need to scroll down page to you see a video titled Interactive Publication " Practical considerations in Metastatic Melanoma. Scroll down again to episode # 3. The other episodes are excellent as well. Dr. Mario Sznol and Dr. Omid Hamid and Dr. Jeffrey Weber are leading experts in the field of Melanoma. Wishing you the best!!! Ed
-
- May 20, 2015 at 12:49 pm
Hi "Never going to stop". I justed wanted to add to what has been talked about already. I watched a video last year on (OncLive) with Dr. Mario Sznol M.D. as the moderator, with a panel including surgeons and Oncologist and in the video series the panel in episode 3 talks about Lymph node Management in Melanoma. The panel talks aboout Lymph node dissection (CLND) following a positive sentinel lymph node(SLN). It is very interesting to hear what Dr.s from different hospital use as guide lines. It is very informative as well to get a small glimpse into the thinking of surgeons who many see first before every meeting with a Oncologist. During the talk Dr. Sznol makes a reference to the possible importance to keeping the Lymph nodes. He doesn't go into detail but I believe he is talking about in Immunotherapy the T-cells are so important in the process of attacking the cancer, so if you take away Lymph nodes you are taking away the factory where they are being manufactured. To watch the video on Onclive you need to join (free) then hit the Melanoma title left column of page. You then need to scroll down page to you see a video titled Interactive Publication " Practical considerations in Metastatic Melanoma. Scroll down again to episode # 3. The other episodes are excellent as well. Dr. Mario Sznol and Dr. Omid Hamid and Dr. Jeffrey Weber are leading experts in the field of Melanoma. Wishing you the best!!! Ed
-
- May 20, 2015 at 12:49 pm
Hi "Never going to stop". I justed wanted to add to what has been talked about already. I watched a video last year on (OncLive) with Dr. Mario Sznol M.D. as the moderator, with a panel including surgeons and Oncologist and in the video series the panel in episode 3 talks about Lymph node Management in Melanoma. The panel talks aboout Lymph node dissection (CLND) following a positive sentinel lymph node(SLN). It is very interesting to hear what Dr.s from different hospital use as guide lines. It is very informative as well to get a small glimpse into the thinking of surgeons who many see first before every meeting with a Oncologist. During the talk Dr. Sznol makes a reference to the possible importance to keeping the Lymph nodes. He doesn't go into detail but I believe he is talking about in Immunotherapy the T-cells are so important in the process of attacking the cancer, so if you take away Lymph nodes you are taking away the factory where they are being manufactured. To watch the video on Onclive you need to join (free) then hit the Melanoma title left column of page. You then need to scroll down page to you see a video titled Interactive Publication " Practical considerations in Metastatic Melanoma. Scroll down again to episode # 3. The other episodes are excellent as well. Dr. Mario Sznol and Dr. Omid Hamid and Dr. Jeffrey Weber are leading experts in the field of Melanoma. Wishing you the best!!! Ed
-
- You must be logged in to reply to this topic.