Never Gonna Stop

My heart sank when I saw the thread title. I had been hoping for some good news for you.

Perhaps my best piece of advice is to try not to let your imagination go to all the worst-case scenarios (easier said than done, I know). But your thoughts can make this a tougher process, especially before you have the complete picture. You may have no other nodes positive!

As others have said, expect the surgeon to suggest a complete lymph node dissection. Whether you have it is ultimately your decision. There is a large clinical trial ongoing to determine if the procedure actually improves survival versus nodal observation. Unfortunately we won't have the results for a long while. I decided to do the CLND, and I had the surgery exactly 2 weeks after my WLE and sentinel biopsy. I stayed one night in the hospital, but I found the pain to be pretty manageable. I was very torn on whether I wanted to have the surgery, but I'm glad I did since one more node was positive for melanoma. I would describe recovery from this procedure as "inconvenient" because of the JP drain that comes with it for 2-4 weeks (or perhaps more), and you do have a 20-30% or so chance of developing life-long lymphedema (which I did), but that can be managed and kept at bay. Yours was upper body, though, right? I believe the lymphedema risk is substantially higher for the inguinal nodes in the groin (which is where my surgery was).

Happy to share more or answer more questions as you go along. If you haven't gotten one already, I'd ask for a copy of the pathology report on your lymph node (and of course, your primary, too). Not all tumors are created equal, and you can glean a lot of information from your path report!

My heart sank when I saw the thread title. I had been hoping for some good news for you.

Perhaps my best piece of advice is to try not to let your imagination go to all the worst-case scenarios (easier said than done, I know). But your thoughts can make this a tougher process, especially before you have the complete picture. You may have no other nodes positive!

As others have said, expect the surgeon to suggest a complete lymph node dissection. Whether you have it is ultimately your decision. There is a large clinical trial ongoing to determine if the procedure actually improves survival versus nodal observation. Unfortunately we won't have the results for a long while. I decided to do the CLND, and I had the surgery exactly 2 weeks after my WLE and sentinel biopsy. I stayed one night in the hospital, but I found the pain to be pretty manageable. I was very torn on whether I wanted to have the surgery, but I'm glad I did since one more node was positive for melanoma. I would describe recovery from this procedure as "inconvenient" because of the JP drain that comes with it for 2-4 weeks (or perhaps more), and you do have a 20-30% or so chance of developing life-long lymphedema (which I did), but that can be managed and kept at bay. Yours was upper body, though, right? I believe the lymphedema risk is substantially higher for the inguinal nodes in the groin (which is where my surgery was).

Happy to share more or answer more questions as you go along. If you haven't gotten one already, I'd ask for a copy of the pathology report on your lymph node (and of course, your primary, too). Not all tumors are created equal, and you can glean a lot of information from your path report!

My heart sank when I saw the thread title. I had been hoping for some good news for you.

Perhaps my best piece of advice is to try not to let your imagination go to all the worst-case scenarios (easier said than done, I know). But your thoughts can make this a tougher process, especially before you have the complete picture. You may have no other nodes positive!

As others have said, expect the surgeon to suggest a complete lymph node dissection. Whether you have it is ultimately your decision. There is a large clinical trial ongoing to determine if the procedure actually improves survival versus nodal observation. Unfortunately we won't have the results for a long while. I decided to do the CLND, and I had the surgery exactly 2 weeks after my WLE and sentinel biopsy. I stayed one night in the hospital, but I found the pain to be pretty manageable. I was very torn on whether I wanted to have the surgery, but I'm glad I did since one more node was positive for melanoma. I would describe recovery from this procedure as "inconvenient" because of the JP drain that comes with it for 2-4 weeks (or perhaps more), and you do have a 20-30% or so chance of developing life-long lymphedema (which I did), but that can be managed and kept at bay. Yours was upper body, though, right? I believe the lymphedema risk is substantially higher for the inguinal nodes in the groin (which is where my surgery was).

Happy to share more or answer more questions as you go along. If you haven't gotten one already, I'd ask for a copy of the pathology report on your lymph node (and of course, your primary, too). Not all tumors are created equal, and you can glean a lot of information from your path report!

I think the pain after the SLNB procedure really varies on the depth of your sentinel node. The deeper it is, the more they have to poke and prod and cut to get to it. Mine was apparently pretty superficial, and my WLE bothered me far more than my sentinel node spot. I know someone else who was the exact reverse…WLE didn't bother her at all, and she had a tremendous amount of pain from her SLNB (but she was told one of her three sentinel nodes was pretty deep).

The pain should fade with time though!

I think the pain after the SLNB procedure really varies on the depth of your sentinel node. The deeper it is, the more they have to poke and prod and cut to get to it. Mine was apparently pretty superficial, and my WLE bothered me far more than my sentinel node spot. I know someone else who was the exact reverse…WLE didn't bother her at all, and she had a tremendous amount of pain from her SLNB (but she was told one of her three sentinel nodes was pretty deep).

The pain should fade with time though!

I think the pain after the SLNB procedure really varies on the depth of your sentinel node. The deeper it is, the more they have to poke and prod and cut to get to it. Mine was apparently pretty superficial, and my WLE bothered me far more than my sentinel node spot. I know someone else who was the exact reverse…WLE didn't bother her at all, and she had a tremendous amount of pain from her SLNB (but she was told one of her three sentinel nodes was pretty deep).

The pain should fade with time though!

It can seemingly be a razor thin line between not doing enough and doing too much. The sentinel lymph node biopsy isn't perfect, but it's a good procedure. The identified node(s) SHOULD be the node(s) most at risk, and it prevents the morbidity of a complete lymph node dissection (which sucks, as I've found out!).

Try to take some solace in the fact that your sentinel node was negative, but never be afraid to go get a second opinion!

I echo some of the lifestyle comments that Brian had. I think one of the best things any cancer patient can do is find ways to start living a healthier lifestyle. I read a lot on nutrition and cancer after my diagnosis and have completely renovated my diet (e.g. I dropped almost all processed foods, no sweets, eat whole grains, added lots of veggies, and picked up a nutrition system to supplement my diet and make sure I'm getting all the parts my immune system needs). Is it helping in my cancer fight? Quite possibly, but it's impossible to say. What I can say is that I'm a healthier person overall, and that's never a bad thing in this battle! I'm tolerating the dreaded interferon therapy well, and I have lots of energy for all that I'm going through. I'll never know exactly how much it helps prevent a relapse (which God willing never happens), but there's something to be said for feeling like you're taking your life into your own hands and doing what you can by living healthy! Same for exercise too, which definitely improves your overall health. I also had a bad tendency in the past to stay up too late and sleep too little ("Just one more episode…"), and I made the concscious choice finally that adequate, quality sleep was necessary for this battle.

Do what you can to live a healthy lifestyle (maybe you already are, and if so, kudos to you!), stay on the cutting edge of your treatment options, and have faith that you can beat this beast (because lots of people are!).

Best of luck to you!

It can seemingly be a razor thin line between not doing enough and doing too much. The sentinel lymph node biopsy isn't perfect, but it's a good procedure. The identified node(s) SHOULD be the node(s) most at risk, and it prevents the morbidity of a complete lymph node dissection (which sucks, as I've found out!).

Try to take some solace in the fact that your sentinel node was negative, but never be afraid to go get a second opinion!

I echo some of the lifestyle comments that Brian had. I think one of the best things any cancer patient can do is find ways to start living a healthier lifestyle. I read a lot on nutrition and cancer after my diagnosis and have completely renovated my diet (e.g. I dropped almost all processed foods, no sweets, eat whole grains, added lots of veggies, and picked up a nutrition system to supplement my diet and make sure I'm getting all the parts my immune system needs). Is it helping in my cancer fight? Quite possibly, but it's impossible to say. What I can say is that I'm a healthier person overall, and that's never a bad thing in this battle! I'm tolerating the dreaded interferon therapy well, and I have lots of energy for all that I'm going through. I'll never know exactly how much it helps prevent a relapse (which God willing never happens), but there's something to be said for feeling like you're taking your life into your own hands and doing what you can by living healthy! Same for exercise too, which definitely improves your overall health. I also had a bad tendency in the past to stay up too late and sleep too little ("Just one more episode…"), and I made the concscious choice finally that adequate, quality sleep was necessary for this battle.

Do what you can to live a healthy lifestyle (maybe you already are, and if so, kudos to you!), stay on the cutting edge of your treatment options, and have faith that you can beat this beast (because lots of people are!).

Best of luck to you!

It can seemingly be a razor thin line between not doing enough and doing too much. The sentinel lymph node biopsy isn't perfect, but it's a good procedure. The identified node(s) SHOULD be the node(s) most at risk, and it prevents the morbidity of a complete lymph node dissection (which sucks, as I've found out!).

Try to take some solace in the fact that your sentinel node was negative, but never be afraid to go get a second opinion!

I echo some of the lifestyle comments that Brian had. I think one of the best things any cancer patient can do is find ways to start living a healthier lifestyle. I read a lot on nutrition and cancer after my diagnosis and have completely renovated my diet (e.g. I dropped almost all processed foods, no sweets, eat whole grains, added lots of veggies, and picked up a nutrition system to supplement my diet and make sure I'm getting all the parts my immune system needs). Is it helping in my cancer fight? Quite possibly, but it's impossible to say. What I can say is that I'm a healthier person overall, and that's never a bad thing in this battle! I'm tolerating the dreaded interferon therapy well, and I have lots of energy for all that I'm going through. I'll never know exactly how much it helps prevent a relapse (which God willing never happens), but there's something to be said for feeling like you're taking your life into your own hands and doing what you can by living healthy! Same for exercise too, which definitely improves your overall health. I also had a bad tendency in the past to stay up too late and sleep too little ("Just one more episode…"), and I made the concscious choice finally that adequate, quality sleep was necessary for this battle.

Do what you can to live a healthy lifestyle (maybe you already are, and if so, kudos to you!), stay on the cutting edge of your treatment options, and have faith that you can beat this beast (because lots of people are!).

Best of luck to you!

You have no idea what you're talking about. Intron A is recombinant interferon alfa-2b. That means it is an exact replicate of the cloned gene for interferon alfa-2b. So, it is EXACTLY like the real interferon that occurs naturally. The gene (from human immune cells) is inserted into bacteria (innocuous E. coli) with a plasmid, and the bacteria become interferon factories. They collect the interferon and purify it from the other components.

You have no idea what you're talking about. Intron A is recombinant interferon alfa-2b. That means it is an exact replicate of the cloned gene for interferon alfa-2b. So, it is EXACTLY like the real interferon that occurs naturally. The gene (from human immune cells) is inserted into bacteria (innocuous E. coli) with a plasmid, and the bacteria become interferon factories. They collect the interferon and purify it from the other components.

You have no idea what you're talking about. Intron A is recombinant interferon alfa-2b. That means it is an exact replicate of the cloned gene for interferon alfa-2b. So, it is EXACTLY like the real interferon that occurs naturally. The gene (from human immune cells) is inserted into bacteria (innocuous E. coli) with a plasmid, and the bacteria become interferon factories. They collect the interferon and purify it from the other components.