› Forums › General Melanoma Community › Recently diagnosed Stage 3A – Trail or watch and wait?
- This topic has 75 replies, 12 voices, and was last updated 8 years, 5 months ago by
karisu.
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- October 7, 2013 at 11:51 pm
Hello to everyone here. I have been reading a lot on this board, and I’m amazed at the mass of information.I am a healthy 30 year old, very athletic. I had a mole on my big toe, had it removed 3.2 mm non ulcerated. I also had a sentinel lymph node biopsy. Results came back with 2 negative and one positive, the positive having “rare isolated tumor cells” according to the pathology report.
My oncologist wants to order a CT scan to see more, but my options are removal of all nodes in the left groin, watch and wait, or a trail that has a less invasive camera that will have them do more node removals.
Based on all of this, could anyone kindly chime in with what they would do or what they think I should do? Dr. said that I have a 9-15% chance that it has spread to other nodes.
I’m trying to cope with all of this, as going from 100 MPH to 0 is quite painful mentally.
- Replies
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- October 8, 2013 at 12:54 am
This is a rough time because you have so much information hitting you all at once. No one can give you the right answer. You can only pick an option that seems right for you at this time in your life and then move on from there. Weigh all the pros and cons of each option and pick the one that suits you the best.
That being said, I'll briefly go though my decision process and hope it help you with yours. When I was diagnosed stage #a in January 2010, I had only 2 options Interferon or a complete lymph node dissection then wait and watch. I choose the CLND and wait and watch. My reasoning was this. Interferon treatment at that time lasted about a year and was no walk in the park. It only had a 3-15% (?) chance of being effective and stats showed it did not extend survival rates. So in my mind that meant for an extra 7% chance of no recurrence, I'd trade off a year of being really sick. NO THANKS. Other people have decided they want to do anything they can to increase their odds.
You do have to understand a CLND is not without side effects. I have had lympnedema, now pretty well controlled. I have damaged nerves that trouble me every now and again, but it's something I can live with. I would do it again, for the peace of mind it have given me.
As you can probably infer I am now over 3 1/2 years with no evidence of disease (NED), so I consider myself quite lucky.
Good Luck,
Mary
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- October 8, 2013 at 12:54 am
This is a rough time because you have so much information hitting you all at once. No one can give you the right answer. You can only pick an option that seems right for you at this time in your life and then move on from there. Weigh all the pros and cons of each option and pick the one that suits you the best.
That being said, I'll briefly go though my decision process and hope it help you with yours. When I was diagnosed stage #a in January 2010, I had only 2 options Interferon or a complete lymph node dissection then wait and watch. I choose the CLND and wait and watch. My reasoning was this. Interferon treatment at that time lasted about a year and was no walk in the park. It only had a 3-15% (?) chance of being effective and stats showed it did not extend survival rates. So in my mind that meant for an extra 7% chance of no recurrence, I'd trade off a year of being really sick. NO THANKS. Other people have decided they want to do anything they can to increase their odds.
You do have to understand a CLND is not without side effects. I have had lympnedema, now pretty well controlled. I have damaged nerves that trouble me every now and again, but it's something I can live with. I would do it again, for the peace of mind it have given me.
As you can probably infer I am now over 3 1/2 years with no evidence of disease (NED), so I consider myself quite lucky.
Good Luck,
Mary
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- October 8, 2013 at 12:54 am
This is a rough time because you have so much information hitting you all at once. No one can give you the right answer. You can only pick an option that seems right for you at this time in your life and then move on from there. Weigh all the pros and cons of each option and pick the one that suits you the best.
That being said, I'll briefly go though my decision process and hope it help you with yours. When I was diagnosed stage #a in January 2010, I had only 2 options Interferon or a complete lymph node dissection then wait and watch. I choose the CLND and wait and watch. My reasoning was this. Interferon treatment at that time lasted about a year and was no walk in the park. It only had a 3-15% (?) chance of being effective and stats showed it did not extend survival rates. So in my mind that meant for an extra 7% chance of no recurrence, I'd trade off a year of being really sick. NO THANKS. Other people have decided they want to do anything they can to increase their odds.
You do have to understand a CLND is not without side effects. I have had lympnedema, now pretty well controlled. I have damaged nerves that trouble me every now and again, but it's something I can live with. I would do it again, for the peace of mind it have given me.
As you can probably infer I am now over 3 1/2 years with no evidence of disease (NED), so I consider myself quite lucky.
Good Luck,
Mary
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- October 8, 2013 at 1:12 am
Sorry you had to join the club. I had a melanoma on my lower left leg with micro mets to the groin. We wrestled with the same option…surgery or watch and wait. I don’t know if there is a right answer but I along with my wife opted for the complete lymph node dissection, left groin. I was concerned about the possibility of lymphedema but thought I would be more anxious with the prospect of waiting. The surgery went well but I did get a post op infection which landed me back in the hospital for 8-9 days. Afterward, I volunteered for a clinical trial (dendritic cell vaccine #10-229). I have check ups every three months. I had no edema and today I am back to running and am generally active (without any discomfort). So, you’re taking the right step in getting as much information as you can and make the most informed decision. My doctors were very accommodating and reviewed the upside and downside of all the options. Hopefully yours are as well. I found that after the initial mental pain, things slowed down and I realized this is a marathon, not a sprint! Good luck and keep your head up! -
- October 8, 2013 at 1:12 am
Sorry you had to join the club. I had a melanoma on my lower left leg with micro mets to the groin. We wrestled with the same option…surgery or watch and wait. I don’t know if there is a right answer but I along with my wife opted for the complete lymph node dissection, left groin. I was concerned about the possibility of lymphedema but thought I would be more anxious with the prospect of waiting. The surgery went well but I did get a post op infection which landed me back in the hospital for 8-9 days. Afterward, I volunteered for a clinical trial (dendritic cell vaccine #10-229). I have check ups every three months. I had no edema and today I am back to running and am generally active (without any discomfort). So, you’re taking the right step in getting as much information as you can and make the most informed decision. My doctors were very accommodating and reviewed the upside and downside of all the options. Hopefully yours are as well. I found that after the initial mental pain, things slowed down and I realized this is a marathon, not a sprint! Good luck and keep your head up! -
- October 8, 2013 at 1:12 am
Sorry you had to join the club. I had a melanoma on my lower left leg with micro mets to the groin. We wrestled with the same option…surgery or watch and wait. I don’t know if there is a right answer but I along with my wife opted for the complete lymph node dissection, left groin. I was concerned about the possibility of lymphedema but thought I would be more anxious with the prospect of waiting. The surgery went well but I did get a post op infection which landed me back in the hospital for 8-9 days. Afterward, I volunteered for a clinical trial (dendritic cell vaccine #10-229). I have check ups every three months. I had no edema and today I am back to running and am generally active (without any discomfort). So, you’re taking the right step in getting as much information as you can and make the most informed decision. My doctors were very accommodating and reviewed the upside and downside of all the options. Hopefully yours are as well. I found that after the initial mental pain, things slowed down and I realized this is a marathon, not a sprint! Good luck and keep your head up! -
- October 8, 2013 at 1:48 am
You are young and healthy so I would go aggressive early on rather than wait and see and aggressive later if it returns. It is truly a decision only you can make so you need to go with whatever it is you can live with. Get all the information you can, make your best decision and then don't look back.
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- October 8, 2013 at 1:48 am
You are young and healthy so I would go aggressive early on rather than wait and see and aggressive later if it returns. It is truly a decision only you can make so you need to go with whatever it is you can live with. Get all the information you can, make your best decision and then don't look back.
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- October 8, 2013 at 1:48 am
You are young and healthy so I would go aggressive early on rather than wait and see and aggressive later if it returns. It is truly a decision only you can make so you need to go with whatever it is you can live with. Get all the information you can, make your best decision and then don't look back.
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- October 8, 2013 at 3:02 am
Have you discussed a partial lymph node dissectiion rather than a complete one? Some Onc's will do this. Trials aare being conducted to see which aare the most effective for the long run. Paaartial is less aapt to cause lymphedemia.
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- October 8, 2013 at 3:02 am
Have you discussed a partial lymph node dissectiion rather than a complete one? Some Onc's will do this. Trials aare being conducted to see which aare the most effective for the long run. Paaartial is less aapt to cause lymphedemia.
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- October 8, 2013 at 3:02 am
Have you discussed a partial lymph node dissectiion rather than a complete one? Some Onc's will do this. Trials aare being conducted to see which aare the most effective for the long run. Paaartial is less aapt to cause lymphedemia.
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- October 8, 2013 at 4:02 am
sorry! I should add what my choices are. Complete removal of all lymph nodes in my left groin, watch and wait with periodic screening, or a clinical trial that involves less invasive surgery where a camera will be inserted to remove selected nodes (I believe). -
- October 8, 2013 at 4:02 am
sorry! I should add what my choices are. Complete removal of all lymph nodes in my left groin, watch and wait with periodic screening, or a clinical trial that involves less invasive surgery where a camera will be inserted to remove selected nodes (I believe). -
- October 8, 2013 at 4:02 am
sorry! I should add what my choices are. Complete removal of all lymph nodes in my left groin, watch and wait with periodic screening, or a clinical trial that involves less invasive surgery where a camera will be inserted to remove selected nodes (I believe).-
- October 8, 2013 at 11:55 am
Hello,
I was in a similar position as you a few months ago and since I am young (23), opted to do a CLND. I think it is a very important operation to consider being fairly young. I had the operation Sept 11th and I am recovering quite well after a month off work.
Now as far as Interferon… I still haven't decided what the best Adjuvant Treatment will be for me.
Good luck with the decision making process!
Samuel
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- October 8, 2013 at 11:55 am
Hello,
I was in a similar position as you a few months ago and since I am young (23), opted to do a CLND. I think it is a very important operation to consider being fairly young. I had the operation Sept 11th and I am recovering quite well after a month off work.
Now as far as Interferon… I still haven't decided what the best Adjuvant Treatment will be for me.
Good luck with the decision making process!
Samuel
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- October 8, 2013 at 11:55 am
Hello,
I was in a similar position as you a few months ago and since I am young (23), opted to do a CLND. I think it is a very important operation to consider being fairly young. I had the operation Sept 11th and I am recovering quite well after a month off work.
Now as far as Interferon… I still haven't decided what the best Adjuvant Treatment will be for me.
Good luck with the decision making process!
Samuel
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- October 8, 2013 at 1:31 pm
Sorry to hear about the recent diagnosis. I can share my data point… I am stage 3C. After the SLNB, I have not had any additional lymph nodes removed and am doing the "watch and wait" approach. I would be hesitant to do a complete lymph node dissection. Lymph nodes serve a purpose in the body and I would be concerned about lymphedema with your active lifestyle. Just my 2 cents.
Kevin
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- October 8, 2013 at 1:31 pm
Sorry to hear about the recent diagnosis. I can share my data point… I am stage 3C. After the SLNB, I have not had any additional lymph nodes removed and am doing the "watch and wait" approach. I would be hesitant to do a complete lymph node dissection. Lymph nodes serve a purpose in the body and I would be concerned about lymphedema with your active lifestyle. Just my 2 cents.
Kevin
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- October 8, 2013 at 1:31 pm
Sorry to hear about the recent diagnosis. I can share my data point… I am stage 3C. After the SLNB, I have not had any additional lymph nodes removed and am doing the "watch and wait" approach. I would be hesitant to do a complete lymph node dissection. Lymph nodes serve a purpose in the body and I would be concerned about lymphedema with your active lifestyle. Just my 2 cents.
Kevin
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- October 8, 2013 at 2:05 pm
I am 3b. Primary on leg with a positive node. I opted for the partial lymph node removal at groin. They take just the surface pad and leave the deep nodes. One out of seven removed positive. I do have lymphedema and residual nerve damage. I chose Interferon. Completed three weeks of high dose before Doctor stopped treatment due to severe side effects. I am now at the watch and wait stage. I don't regret any decision I've made thus far.
Colleen
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- October 8, 2013 at 2:05 pm
I am 3b. Primary on leg with a positive node. I opted for the partial lymph node removal at groin. They take just the surface pad and leave the deep nodes. One out of seven removed positive. I do have lymphedema and residual nerve damage. I chose Interferon. Completed three weeks of high dose before Doctor stopped treatment due to severe side effects. I am now at the watch and wait stage. I don't regret any decision I've made thus far.
Colleen
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- October 8, 2013 at 2:05 pm
I am 3b. Primary on leg with a positive node. I opted for the partial lymph node removal at groin. They take just the surface pad and leave the deep nodes. One out of seven removed positive. I do have lymphedema and residual nerve damage. I chose Interferon. Completed three weeks of high dose before Doctor stopped treatment due to severe side effects. I am now at the watch and wait stage. I don't regret any decision I've made thus far.
Colleen
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- October 8, 2013 at 3:51 pm
Wow! thank you all so much for replying and adding input.I am still torn. I really don’t want to do the CLND, but the thought of it spreading is really troubling. The only reason I’m shying away from CLND is because the one positive Sentinel node had “rare isolated cells”, which according to my Dr. means trace amounts were detected. If this is the case, would a healthy and strong immune system not be able to handle those loose cells?
Or would the unknown factor of other surrounding nodes being positive be too much? I will ask my oncologist if partial node removal is an option (although I think that’s part of the trial offered to me)
I really appreciate each and everyone of you all taking the time to add to this. I’m really trying to keep my head together, and it’s a challenge.
I am leaning towards the watch and wait at this point. I have another week or so to choose.
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- October 8, 2013 at 4:39 pm
Hey cbrpower,
For what its worth…. I had a CLND after having exactly the rare isolated cells in my SLN. They found NO more involvement in the rest of the lymph nodes in my groin. Only reason I did it was because I am young and it felt right for me to do. They said that 80% of the time they do not find any more involvement when microscopic spread is detected in the SLN.
Once again good luck with your decision 🙂
Samuel
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- October 8, 2013 at 7:04 pm
Samuel,thank you for taking the time to write back
how large was the tumor originally? was it on your foot?
also, after you had the CLND done, do they say how long you have to wear compression packs, swelling etc will last? I just dont know if this is a permanent thing, or temporary.thank you again!
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- October 8, 2013 at 7:04 pm
Samuel,thank you for taking the time to write back
how large was the tumor originally? was it on your foot?
also, after you had the CLND done, do they say how long you have to wear compression packs, swelling etc will last? I just dont know if this is a permanent thing, or temporary.thank you again!
-
- October 8, 2013 at 7:04 pm
Samuel,thank you for taking the time to write back
how large was the tumor originally? was it on your foot?
also, after you had the CLND done, do they say how long you have to wear compression packs, swelling etc will last? I just dont know if this is a permanent thing, or temporary.thank you again!
-
- October 8, 2013 at 7:25 pm
My Primary Tumor was on my right leg (calf) and breslow thickness was 1.65mm, Ulcerated, and Mitotic rate of 5.
After the CLND, I wore the compression wraps for about 2 weeks 24 hrs a day. After that I only wore it to bed at night as I didn't have major lymphedema (just minor swelling of the groin area).
I am about a month out from my CLND and I still have the JP drain attached but the drainage has dropped significantly and will hopefully have it out this Thursday.
Hope this helps feel free to ask anymore questions if you need to 🙂
PS…. POWs post below is exactly true, everyone will come to a decision on their own and their's will be the right one.
Samuel
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- October 8, 2013 at 7:25 pm
My Primary Tumor was on my right leg (calf) and breslow thickness was 1.65mm, Ulcerated, and Mitotic rate of 5.
After the CLND, I wore the compression wraps for about 2 weeks 24 hrs a day. After that I only wore it to bed at night as I didn't have major lymphedema (just minor swelling of the groin area).
I am about a month out from my CLND and I still have the JP drain attached but the drainage has dropped significantly and will hopefully have it out this Thursday.
Hope this helps feel free to ask anymore questions if you need to 🙂
PS…. POWs post below is exactly true, everyone will come to a decision on their own and their's will be the right one.
Samuel
-
- October 8, 2013 at 7:25 pm
My Primary Tumor was on my right leg (calf) and breslow thickness was 1.65mm, Ulcerated, and Mitotic rate of 5.
After the CLND, I wore the compression wraps for about 2 weeks 24 hrs a day. After that I only wore it to bed at night as I didn't have major lymphedema (just minor swelling of the groin area).
I am about a month out from my CLND and I still have the JP drain attached but the drainage has dropped significantly and will hopefully have it out this Thursday.
Hope this helps feel free to ask anymore questions if you need to 🙂
PS…. POWs post below is exactly true, everyone will come to a decision on their own and their's will be the right one.
Samuel
-
- October 8, 2013 at 4:39 pm
Hey cbrpower,
For what its worth…. I had a CLND after having exactly the rare isolated cells in my SLN. They found NO more involvement in the rest of the lymph nodes in my groin. Only reason I did it was because I am young and it felt right for me to do. They said that 80% of the time they do not find any more involvement when microscopic spread is detected in the SLN.
Once again good luck with your decision 🙂
Samuel
-
- October 8, 2013 at 4:39 pm
Hey cbrpower,
For what its worth…. I had a CLND after having exactly the rare isolated cells in my SLN. They found NO more involvement in the rest of the lymph nodes in my groin. Only reason I did it was because I am young and it felt right for me to do. They said that 80% of the time they do not find any more involvement when microscopic spread is detected in the SLN.
Once again good luck with your decision 🙂
Samuel
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- October 8, 2013 at 4:46 pm
You know, I noticed something interesting in this thread. On reflection, I have noticed it in other threads about similar dilemmas. What I've noticed is that almost everybody says, "I decided to do X and I do not regret it." This is the voice of experience talking and it is very important.
One of the first things you need to learn during your melanoma journey is that nobody has the "right" answer. Not the doctors, not your fellow warriors, nobody. Melanoma is a particularly devious and tricky disease and everybody responds differently to any given treatment. What works in some people doesn't work in others and no one can predict what will happen when you try it.
So the best thing you can do for yourself is to make the best decision you can with the information you have available at the time and NEVER LOOK BACK. Never say, "I'm sorry I tried X because it didn't work for me." or "I'm sorry I did X because now there is a clinical trial available that might have been better for me if I had waited." That way lies madness.
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- October 8, 2013 at 4:46 pm
You know, I noticed something interesting in this thread. On reflection, I have noticed it in other threads about similar dilemmas. What I've noticed is that almost everybody says, "I decided to do X and I do not regret it." This is the voice of experience talking and it is very important.
One of the first things you need to learn during your melanoma journey is that nobody has the "right" answer. Not the doctors, not your fellow warriors, nobody. Melanoma is a particularly devious and tricky disease and everybody responds differently to any given treatment. What works in some people doesn't work in others and no one can predict what will happen when you try it.
So the best thing you can do for yourself is to make the best decision you can with the information you have available at the time and NEVER LOOK BACK. Never say, "I'm sorry I tried X because it didn't work for me." or "I'm sorry I did X because now there is a clinical trial available that might have been better for me if I had waited." That way lies madness.
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- October 8, 2013 at 4:46 pm
You know, I noticed something interesting in this thread. On reflection, I have noticed it in other threads about similar dilemmas. What I've noticed is that almost everybody says, "I decided to do X and I do not regret it." This is the voice of experience talking and it is very important.
One of the first things you need to learn during your melanoma journey is that nobody has the "right" answer. Not the doctors, not your fellow warriors, nobody. Melanoma is a particularly devious and tricky disease and everybody responds differently to any given treatment. What works in some people doesn't work in others and no one can predict what will happen when you try it.
So the best thing you can do for yourself is to make the best decision you can with the information you have available at the time and NEVER LOOK BACK. Never say, "I'm sorry I tried X because it didn't work for me." or "I'm sorry I did X because now there is a clinical trial available that might have been better for me if I had waited." That way lies madness.
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- October 8, 2013 at 3:51 pm
Wow! thank you all so much for replying and adding input.I am still torn. I really don’t want to do the CLND, but the thought of it spreading is really troubling. The only reason I’m shying away from CLND is because the one positive Sentinel node had “rare isolated cells”, which according to my Dr. means trace amounts were detected. If this is the case, would a healthy and strong immune system not be able to handle those loose cells?
Or would the unknown factor of other surrounding nodes being positive be too much? I will ask my oncologist if partial node removal is an option (although I think that’s part of the trial offered to me)
I really appreciate each and everyone of you all taking the time to add to this. I’m really trying to keep my head together, and it’s a challenge.
I am leaning towards the watch and wait at this point. I have another week or so to choose.
-
- October 8, 2013 at 3:51 pm
Wow! thank you all so much for replying and adding input.I am still torn. I really don’t want to do the CLND, but the thought of it spreading is really troubling. The only reason I’m shying away from CLND is because the one positive Sentinel node had “rare isolated cells”, which according to my Dr. means trace amounts were detected. If this is the case, would a healthy and strong immune system not be able to handle those loose cells?
Or would the unknown factor of other surrounding nodes being positive be too much? I will ask my oncologist if partial node removal is an option (although I think that’s part of the trial offered to me)
I really appreciate each and everyone of you all taking the time to add to this. I’m really trying to keep my head together, and it’s a challenge.
I am leaning towards the watch and wait at this point. I have another week or so to choose.
-
- October 9, 2013 at 7:12 pm
Hello everyone again,Thank you all very much for chiming in. Each one of you have helped me a lot with my journey already.
I think I’ve made up my mind. I will do the watch and wait (assuming my CT scan comes back clean this week).
From what I’ve dug up, my one SLN being positive with trace amounts (rare isolated cells) and the 2 other deeper SLNs being clean, I was given 9-15% chance that it has spread to other nodes. My thought process being that I believe in my body’s immune system to handle any stray isolated cells – should there be any in other nodes. As far as I know, I could be sitting here completely NED. The chances I am clean are on my side.
My backup thought process is that if for some reason it has spread, Frequent imaging could spot anything unusual. I just can’t go through the CLND knowing that the other nodes have 85%+ chance of being clean. I am so active, that risking to lose all of my sports forever to a major operation would destroy me just as bad as the melanoma.
Thoughts anyone?
best,
Kamran
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- October 9, 2013 at 7:12 pm
Hello everyone again,Thank you all very much for chiming in. Each one of you have helped me a lot with my journey already.
I think I’ve made up my mind. I will do the watch and wait (assuming my CT scan comes back clean this week).
From what I’ve dug up, my one SLN being positive with trace amounts (rare isolated cells) and the 2 other deeper SLNs being clean, I was given 9-15% chance that it has spread to other nodes. My thought process being that I believe in my body’s immune system to handle any stray isolated cells – should there be any in other nodes. As far as I know, I could be sitting here completely NED. The chances I am clean are on my side.
My backup thought process is that if for some reason it has spread, Frequent imaging could spot anything unusual. I just can’t go through the CLND knowing that the other nodes have 85%+ chance of being clean. I am so active, that risking to lose all of my sports forever to a major operation would destroy me just as bad as the melanoma.
Thoughts anyone?
best,
Kamran
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- October 9, 2013 at 10:48 pm
I opted for removal of the inguinal nodes after being told the SLB was positive with 1 to 2% cancer cells in the node. I was given an option to watch and wait with a 20% chance that it had spread to other nodes. I was home the next day and now am 1 week out. I have 2 drains, that is the biggest irritation. Very little pain and very little swelling of the leg. I can walk without pain but have to have my leg up most of the time for 2 weeks. I am glad I did the partial dissection even though I still don’t know the outcome yet of the other nodes. The watch and wait MLST 2 trial that I was offered is specifically looking at whether or not elective lymph node dissection extends survival time or recurrence time. My take away from reading the results of the MLST 1 trial was that for a subset of low risk or low tumor burden people, that the dissection lengthens survival time by 20%. That is why I opted for the dissection. Sorry you have to even worry about making a decision like this at your age. Best wishes in whatever it is you choose to do. -
- October 9, 2013 at 10:48 pm
I opted for removal of the inguinal nodes after being told the SLB was positive with 1 to 2% cancer cells in the node. I was given an option to watch and wait with a 20% chance that it had spread to other nodes. I was home the next day and now am 1 week out. I have 2 drains, that is the biggest irritation. Very little pain and very little swelling of the leg. I can walk without pain but have to have my leg up most of the time for 2 weeks. I am glad I did the partial dissection even though I still don’t know the outcome yet of the other nodes. The watch and wait MLST 2 trial that I was offered is specifically looking at whether or not elective lymph node dissection extends survival time or recurrence time. My take away from reading the results of the MLST 1 trial was that for a subset of low risk or low tumor burden people, that the dissection lengthens survival time by 20%. That is why I opted for the dissection. Sorry you have to even worry about making a decision like this at your age. Best wishes in whatever it is you choose to do. -
- October 13, 2013 at 9:22 am
Hello again,That is amazing news! I am very happy to hear that. Based on everything I have read and researched (thankful for pubmed.gov) I have made my decision to watch and wait. There are many factors involved in this decision, primarily being how low of a percentage of NSLN involvement rates based on piles of data. Of course, figuring out which variables (breslow thickness, location of tumor, ulceration?, and positive sentinel node tumor burden) matter most was tricky, but, I did find out. The question of ulceration and amount of melanoma deposit in the positive node are the most important ones. This was custom tailored to my particular position. My risk is below 6%, and I feel that I could live with that.
Another vital part of my decision is that I truly believe in my body’s immune system and overall condition/health. Hopefully, this will be the end of this (even given the 20-30% chance of recurrence).
Thank you for writing me back with your results! May you live cancer free and healthy…
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- October 13, 2013 at 9:22 am
Hello again,That is amazing news! I am very happy to hear that. Based on everything I have read and researched (thankful for pubmed.gov) I have made my decision to watch and wait. There are many factors involved in this decision, primarily being how low of a percentage of NSLN involvement rates based on piles of data. Of course, figuring out which variables (breslow thickness, location of tumor, ulceration?, and positive sentinel node tumor burden) matter most was tricky, but, I did find out. The question of ulceration and amount of melanoma deposit in the positive node are the most important ones. This was custom tailored to my particular position. My risk is below 6%, and I feel that I could live with that.
Another vital part of my decision is that I truly believe in my body’s immune system and overall condition/health. Hopefully, this will be the end of this (even given the 20-30% chance of recurrence).
Thank you for writing me back with your results! May you live cancer free and healthy…
-
- October 13, 2013 at 9:22 am
Hello again,That is amazing news! I am very happy to hear that. Based on everything I have read and researched (thankful for pubmed.gov) I have made my decision to watch and wait. There are many factors involved in this decision, primarily being how low of a percentage of NSLN involvement rates based on piles of data. Of course, figuring out which variables (breslow thickness, location of tumor, ulceration?, and positive sentinel node tumor burden) matter most was tricky, but, I did find out. The question of ulceration and amount of melanoma deposit in the positive node are the most important ones. This was custom tailored to my particular position. My risk is below 6%, and I feel that I could live with that.
Another vital part of my decision is that I truly believe in my body’s immune system and overall condition/health. Hopefully, this will be the end of this (even given the 20-30% chance of recurrence).
Thank you for writing me back with your results! May you live cancer free and healthy…
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- October 9, 2013 at 10:48 pm
I opted for removal of the inguinal nodes after being told the SLB was positive with 1 to 2% cancer cells in the node. I was given an option to watch and wait with a 20% chance that it had spread to other nodes. I was home the next day and now am 1 week out. I have 2 drains, that is the biggest irritation. Very little pain and very little swelling of the leg. I can walk without pain but have to have my leg up most of the time for 2 weeks. I am glad I did the partial dissection even though I still don’t know the outcome yet of the other nodes. The watch and wait MLST 2 trial that I was offered is specifically looking at whether or not elective lymph node dissection extends survival time or recurrence time. My take away from reading the results of the MLST 1 trial was that for a subset of low risk or low tumor burden people, that the dissection lengthens survival time by 20%. That is why I opted for the dissection. Sorry you have to even worry about making a decision like this at your age. Best wishes in whatever it is you choose to do. -
- June 26, 2016 at 10:07 am
Hi
I've been following this conversation. I've melanoma stage 3. Surgeon wants to remove all of my lymph nodes in right groin. No sentinal lymph node biopsy was done on me. I only had an ultrasound-guided biopsy done on my lymph nodes: three nodes were biopsied. I do not know which ones (superficial or deep), as they wont let me see my medical records !!!!! I'm an American, in my 50s, in England. I'm very active and athletic, DO NOT want my ability to do sport to be affected by nerve damage and lymphedema etc. I do cross training and ride horses !!! Since I havent seen the biopsy report I'm very sceptical about haivng a complete lymph node dissection done on me !!! My surgeoon is tops in his fied, but I'm very sceptical. My superficial nodes are not even swollen! I've no pain. I was diagnosed one year ago.
I would like to hear your thoughts and anyone elses.
Karin
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- June 26, 2016 at 10:07 am
Hi
I've been following this conversation. I've melanoma stage 3. Surgeon wants to remove all of my lymph nodes in right groin. No sentinal lymph node biopsy was done on me. I only had an ultrasound-guided biopsy done on my lymph nodes: three nodes were biopsied. I do not know which ones (superficial or deep), as they wont let me see my medical records !!!!! I'm an American, in my 50s, in England. I'm very active and athletic, DO NOT want my ability to do sport to be affected by nerve damage and lymphedema etc. I do cross training and ride horses !!! Since I havent seen the biopsy report I'm very sceptical about haivng a complete lymph node dissection done on me !!! My surgeoon is tops in his fied, but I'm very sceptical. My superficial nodes are not even swollen! I've no pain. I was diagnosed one year ago.
I would like to hear your thoughts and anyone elses.
Karin
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- June 26, 2016 at 10:07 am
Hi
I've been following this conversation. I've melanoma stage 3. Surgeon wants to remove all of my lymph nodes in right groin. No sentinal lymph node biopsy was done on me. I only had an ultrasound-guided biopsy done on my lymph nodes: three nodes were biopsied. I do not know which ones (superficial or deep), as they wont let me see my medical records !!!!! I'm an American, in my 50s, in England. I'm very active and athletic, DO NOT want my ability to do sport to be affected by nerve damage and lymphedema etc. I do cross training and ride horses !!! Since I havent seen the biopsy report I'm very sceptical about haivng a complete lymph node dissection done on me !!! My surgeoon is tops in his fied, but I'm very sceptical. My superficial nodes are not even swollen! I've no pain. I was diagnosed one year ago.
I would like to hear your thoughts and anyone elses.
Karin
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- October 9, 2013 at 7:12 pm
Hello everyone again,Thank you all very much for chiming in. Each one of you have helped me a lot with my journey already.
I think I’ve made up my mind. I will do the watch and wait (assuming my CT scan comes back clean this week).
From what I’ve dug up, my one SLN being positive with trace amounts (rare isolated cells) and the 2 other deeper SLNs being clean, I was given 9-15% chance that it has spread to other nodes. My thought process being that I believe in my body’s immune system to handle any stray isolated cells – should there be any in other nodes. As far as I know, I could be sitting here completely NED. The chances I am clean are on my side.
My backup thought process is that if for some reason it has spread, Frequent imaging could spot anything unusual. I just can’t go through the CLND knowing that the other nodes have 85%+ chance of being clean. I am so active, that risking to lose all of my sports forever to a major operation would destroy me just as bad as the melanoma.
Thoughts anyone?
best,
Kamran
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- October 10, 2013 at 2:57 pm
Hi,
I am the spouse of a Stage IIIA melanoma survivor.
10 years ago my husband (34 years old, back then) was diagnosed with Stage IIIA melanoma. The story is similar to yours. A strange "mole" on his right ankle and two positive sentinel nodes in his groin. He opted for the removal of all nodes in his right groin (which came back negative). Since then he has been wearing a compression stocking, to prevent edema (not a big deal, he got used to the stocking very quickly).
Given his stage, his oncologist recommended one-year interferon therapy. This was almost ten years ago, and there may be some more informaiton/studies about interferon by now.
I just want to let you know that you what is happening to you right now, has happened to other patients in the past and there is hope.
My suggestion is: take a deep breath and get a melanoma SPECIALIST you trust (not a "generic oncologist, as melanoma is a very "different" type of disease) and discuss your options with him/her.
All the best.
Ninja
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- October 10, 2013 at 2:57 pm
Hi,
I am the spouse of a Stage IIIA melanoma survivor.
10 years ago my husband (34 years old, back then) was diagnosed with Stage IIIA melanoma. The story is similar to yours. A strange "mole" on his right ankle and two positive sentinel nodes in his groin. He opted for the removal of all nodes in his right groin (which came back negative). Since then he has been wearing a compression stocking, to prevent edema (not a big deal, he got used to the stocking very quickly).
Given his stage, his oncologist recommended one-year interferon therapy. This was almost ten years ago, and there may be some more informaiton/studies about interferon by now.
I just want to let you know that you what is happening to you right now, has happened to other patients in the past and there is hope.
My suggestion is: take a deep breath and get a melanoma SPECIALIST you trust (not a "generic oncologist, as melanoma is a very "different" type of disease) and discuss your options with him/her.
All the best.
Ninja
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- October 10, 2013 at 2:57 pm
Hi,
I am the spouse of a Stage IIIA melanoma survivor.
10 years ago my husband (34 years old, back then) was diagnosed with Stage IIIA melanoma. The story is similar to yours. A strange "mole" on his right ankle and two positive sentinel nodes in his groin. He opted for the removal of all nodes in his right groin (which came back negative). Since then he has been wearing a compression stocking, to prevent edema (not a big deal, he got used to the stocking very quickly).
Given his stage, his oncologist recommended one-year interferon therapy. This was almost ten years ago, and there may be some more informaiton/studies about interferon by now.
I just want to let you know that you what is happening to you right now, has happened to other patients in the past and there is hope.
My suggestion is: take a deep breath and get a melanoma SPECIALIST you trust (not a "generic oncologist, as melanoma is a very "different" type of disease) and discuss your options with him/her.
All the best.
Ninja
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- October 10, 2013 at 11:52 pm
Hello Ninja and thank you for writing to me.I am glad your husband survived and is doing well. Did he take the interferon that was recommended? Or did he just do the lymph node removal and that’s it?
Luckily, I only had 1 node positive with trace amounts of cell build up in the node.
Thank you Ninja…
Kamran
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- October 10, 2013 at 11:52 pm
Hello Ninja and thank you for writing to me.I am glad your husband survived and is doing well. Did he take the interferon that was recommended? Or did he just do the lymph node removal and that’s it?
Luckily, I only had 1 node positive with trace amounts of cell build up in the node.
Thank you Ninja…
Kamran
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- October 11, 2013 at 2:59 pm
Hi Kamran,
After the complete node removal, he opted to do the 12-month Interferon therapy. The first month was high dose, administred in the hospital and the remaining 11 months it consisted of sub cutaneous self injections.
It has not been easy, I must say, but I am glad he did it. He is a physycian and probably he knew too much about melanoma and all the risks associated with it. This is why he opted for a therapy, rhather than the wait and see approach.
In his case too the two sentinel nodes analyzed tested only "microscopically" positive to melanoma.
He continues to see his oncologist one a year now.
As other members have written here, it is really a very personal decision, but in my husband's case, I am really glad he did that therapy. I keep reading that more drugs are been successfully developed in the fight against melanoma and this is GREAT news, because it gives you more options than those available 10 years ago.
I wish you all the best.
Ninja
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- October 11, 2013 at 2:59 pm
Hi Kamran,
After the complete node removal, he opted to do the 12-month Interferon therapy. The first month was high dose, administred in the hospital and the remaining 11 months it consisted of sub cutaneous self injections.
It has not been easy, I must say, but I am glad he did it. He is a physycian and probably he knew too much about melanoma and all the risks associated with it. This is why he opted for a therapy, rhather than the wait and see approach.
In his case too the two sentinel nodes analyzed tested only "microscopically" positive to melanoma.
He continues to see his oncologist one a year now.
As other members have written here, it is really a very personal decision, but in my husband's case, I am really glad he did that therapy. I keep reading that more drugs are been successfully developed in the fight against melanoma and this is GREAT news, because it gives you more options than those available 10 years ago.
I wish you all the best.
Ninja
-
- October 11, 2013 at 2:59 pm
Hi Kamran,
After the complete node removal, he opted to do the 12-month Interferon therapy. The first month was high dose, administred in the hospital and the remaining 11 months it consisted of sub cutaneous self injections.
It has not been easy, I must say, but I am glad he did it. He is a physycian and probably he knew too much about melanoma and all the risks associated with it. This is why he opted for a therapy, rhather than the wait and see approach.
In his case too the two sentinel nodes analyzed tested only "microscopically" positive to melanoma.
He continues to see his oncologist one a year now.
As other members have written here, it is really a very personal decision, but in my husband's case, I am really glad he did that therapy. I keep reading that more drugs are been successfully developed in the fight against melanoma and this is GREAT news, because it gives you more options than those available 10 years ago.
I wish you all the best.
Ninja
-
- October 10, 2013 at 11:52 pm
Hello Ninja and thank you for writing to me.I am glad your husband survived and is doing well. Did he take the interferon that was recommended? Or did he just do the lymph node removal and that’s it?
Luckily, I only had 1 node positive with trace amounts of cell build up in the node.
Thank you Ninja…
Kamran
-
- November 1, 2013 at 6:19 pm
Hello everyone,just providing a quick update on my situation. So as the previous posts imply, I’ve decided against CLND, for the watch and wait or a far less invasive trial. After meeting with Dr. Antoni Ribas at UCLA, 2 new sets of good news has arised. One, both pet and ct scans came back negative. Two, Dr. ribas said that the original tumor specimen needs to have a new biopsy conducted, as the pathologist comments suggest a potential misdiagnosis. The lesion shares features in common with acral Spitz nevus, which can be easily misinterpreted for melanoma or others.
so this is definitely a positive shed of light after over a month of bad news. I will keep you all posted.
cheers,
Kamran
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- November 5, 2013 at 6:08 pm
Ssounds promising. Great,
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- November 5, 2013 at 6:08 pm
Ssounds promising. Great,
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- November 5, 2013 at 6:08 pm
Ssounds promising. Great,
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- June 26, 2016 at 10:17 am
Hi, very interesting. My melanoma DID NOT look like a melanoma when they first observed it a year ago. It was not dark, it was reddish, It looked more like funus. In fact my dermatologist said it was nothing to wrry about. And he was shocked when he got the histopathology reports back !!! I've not gotten sicker, in fact I feel great. But the doctors want to do a CLND on me in 2 weeks. I dont want to do it.
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- June 26, 2016 at 10:17 am
Hi, very interesting. My melanoma DID NOT look like a melanoma when they first observed it a year ago. It was not dark, it was reddish, It looked more like funus. In fact my dermatologist said it was nothing to wrry about. And he was shocked when he got the histopathology reports back !!! I've not gotten sicker, in fact I feel great. But the doctors want to do a CLND on me in 2 weeks. I dont want to do it.
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- June 26, 2016 at 10:17 am
Hi, very interesting. My melanoma DID NOT look like a melanoma when they first observed it a year ago. It was not dark, it was reddish, It looked more like funus. In fact my dermatologist said it was nothing to wrry about. And he was shocked when he got the histopathology reports back !!! I've not gotten sicker, in fact I feel great. But the doctors want to do a CLND on me in 2 weeks. I dont want to do it.
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- November 1, 2013 at 6:19 pm
Hello everyone,just providing a quick update on my situation. So as the previous posts imply, I’ve decided against CLND, for the watch and wait or a far less invasive trial. After meeting with Dr. Antoni Ribas at UCLA, 2 new sets of good news has arised. One, both pet and ct scans came back negative. Two, Dr. ribas said that the original tumor specimen needs to have a new biopsy conducted, as the pathologist comments suggest a potential misdiagnosis. The lesion shares features in common with acral Spitz nevus, which can be easily misinterpreted for melanoma or others.
so this is definitely a positive shed of light after over a month of bad news. I will keep you all posted.
cheers,
Kamran
-
- November 1, 2013 at 6:19 pm
Hello everyone,just providing a quick update on my situation. So as the previous posts imply, I’ve decided against CLND, for the watch and wait or a far less invasive trial. After meeting with Dr. Antoni Ribas at UCLA, 2 new sets of good news has arised. One, both pet and ct scans came back negative. Two, Dr. ribas said that the original tumor specimen needs to have a new biopsy conducted, as the pathologist comments suggest a potential misdiagnosis. The lesion shares features in common with acral Spitz nevus, which can be easily misinterpreted for melanoma or others.
so this is definitely a positive shed of light after over a month of bad news. I will keep you all posted.
cheers,
Kamran
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Tagged: cutaneous melanoma
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