› Forums › General Melanoma Community › Total lymph node removal vs observation
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Bosandi.
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- January 14, 2012 at 12:03 am
I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they “backed into” the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they “backed into” the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!
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- January 14, 2012 at 1:22 am
I am also a stage III A patient at Sloan Kettering. My oncologist was very OK with not pushing me towards a full lymph node dissection. He did request that I meet with a surgeon anyway so that I could view all of my options. I decided to go with 2 full dissections. (I had positive nodes in 3 separate lymph node basins. I only went with 2 full dissections because MSK wasn't 100% sure that the 3rd basin was positive for melanoma.) I met with the surgeon for about an hour and I flat out asked her what she would do if she were in my shoes. I was only 23 at the time, otherwise healthy, and determined to do everything I could possibly do to beat this. She simply said, "If you have the surgery and the melanoma does spread, you will know that you did everything in your power to prevent it."
I figured, if there was any bit of cancer left in me, I wanted it out.
I wish you the best of luck in making a decision. It isn't an easy one to make!
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- January 14, 2012 at 1:22 am
I am also a stage III A patient at Sloan Kettering. My oncologist was very OK with not pushing me towards a full lymph node dissection. He did request that I meet with a surgeon anyway so that I could view all of my options. I decided to go with 2 full dissections. (I had positive nodes in 3 separate lymph node basins. I only went with 2 full dissections because MSK wasn't 100% sure that the 3rd basin was positive for melanoma.) I met with the surgeon for about an hour and I flat out asked her what she would do if she were in my shoes. I was only 23 at the time, otherwise healthy, and determined to do everything I could possibly do to beat this. She simply said, "If you have the surgery and the melanoma does spread, you will know that you did everything in your power to prevent it."
I figured, if there was any bit of cancer left in me, I wanted it out.
I wish you the best of luck in making a decision. It isn't an easy one to make!
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- January 14, 2012 at 4:26 pm
Thanks CL!. One other questio – when you refer to the number of basins, is that tied to results from the Cloquet node? By the way, I started my journey at Emory and it's a fine institution. However I have found everyone at MSKCC to be incredibly kind. My surgeon was two hours behind. When we finally met with him I could see why. He answered all of our questions and was extremely considerate. I had the same experience at York Ave for my PET and CAT scans. Although I was the literally the last patient (a time when the kindest of folks are known to get a bit cranky) everyone was kind, cheerful and supportive.
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- January 14, 2012 at 4:26 pm
Thanks CL!. One other questio – when you refer to the number of basins, is that tied to results from the Cloquet node? By the way, I started my journey at Emory and it's a fine institution. However I have found everyone at MSKCC to be incredibly kind. My surgeon was two hours behind. When we finally met with him I could see why. He answered all of our questions and was extremely considerate. I had the same experience at York Ave for my PET and CAT scans. Although I was the literally the last patient (a time when the kindest of folks are known to get a bit cranky) everyone was kind, cheerful and supportive.
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- January 14, 2012 at 4:26 pm
Thanks CL!. One other questio – when you refer to the number of basins, is that tied to results from the Cloquet node? By the way, I started my journey at Emory and it's a fine institution. However I have found everyone at MSKCC to be incredibly kind. My surgeon was two hours behind. When we finally met with him I could see why. He answered all of our questions and was extremely considerate. I had the same experience at York Ave for my PET and CAT scans. Although I was the literally the last patient (a time when the kindest of folks are known to get a bit cranky) everyone was kind, cheerful and supportive.
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- January 14, 2012 at 1:22 am
I am also a stage III A patient at Sloan Kettering. My oncologist was very OK with not pushing me towards a full lymph node dissection. He did request that I meet with a surgeon anyway so that I could view all of my options. I decided to go with 2 full dissections. (I had positive nodes in 3 separate lymph node basins. I only went with 2 full dissections because MSK wasn't 100% sure that the 3rd basin was positive for melanoma.) I met with the surgeon for about an hour and I flat out asked her what she would do if she were in my shoes. I was only 23 at the time, otherwise healthy, and determined to do everything I could possibly do to beat this. She simply said, "If you have the surgery and the melanoma does spread, you will know that you did everything in your power to prevent it."
I figured, if there was any bit of cancer left in me, I wanted it out.
I wish you the best of luck in making a decision. It isn't an easy one to make!
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- January 14, 2012 at 1:56 pm
I was just diagnosed with Stage IIIa as well, and i understand what you're going through! I had one positive sentinel lobe in my groin that had a very small amount of microscopic mets. I have an awesome team at the Washington Cancer Institute in Washington, D.C. and they advised doing the lymphanodectomy..
My surgery was scheduled for Jan. 27, but they called yesterday with the option to move it up to this Monday, which I gladly accepted! I was concerned about removing the lymph nodes because of the issues with lymphadema and dealing with the drain, compression stocking, etc. and then decided the hassle and side effects would be worth it if the surgery could possibly keep the melanoma from spreading. If they found that it had spread in a future PET scan, I would be berating myself forever that I didn't opt for the surgery.
I have also come to the same conclusion about Interferon in the past few days, and believe me, I have A LOT of reservations about the Interferon due to its nasty side effects! Unfortunately, it's the only treatment option for my stage of melanoma, and since it MAY make a difference in my survival rate, I'm going to go for it! But I still haven't decided to do the regular treatment or the pegylated interferon yet…
This is a tough diagnosis to deal with because the treatment options don't have definitive outcomes to base your decisions on. I have been doing lots of research, only to find that there are no "hard" facts, and there is a tremendous amount of variation in the side effects for those who have lymphanodectomies and those who take Interferon. I wish it was simpler, lol!
Ultimately, I am basing my decisions on both the research data/medical articles I am finding online, as well as the first-hand experiences of patients who are sharing them on the web. It seems to provide a good balance to base decisions on!
I hope this helps!
Lynn
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- January 14, 2012 at 1:56 pm
I was just diagnosed with Stage IIIa as well, and i understand what you're going through! I had one positive sentinel lobe in my groin that had a very small amount of microscopic mets. I have an awesome team at the Washington Cancer Institute in Washington, D.C. and they advised doing the lymphanodectomy..
My surgery was scheduled for Jan. 27, but they called yesterday with the option to move it up to this Monday, which I gladly accepted! I was concerned about removing the lymph nodes because of the issues with lymphadema and dealing with the drain, compression stocking, etc. and then decided the hassle and side effects would be worth it if the surgery could possibly keep the melanoma from spreading. If they found that it had spread in a future PET scan, I would be berating myself forever that I didn't opt for the surgery.
I have also come to the same conclusion about Interferon in the past few days, and believe me, I have A LOT of reservations about the Interferon due to its nasty side effects! Unfortunately, it's the only treatment option for my stage of melanoma, and since it MAY make a difference in my survival rate, I'm going to go for it! But I still haven't decided to do the regular treatment or the pegylated interferon yet…
This is a tough diagnosis to deal with because the treatment options don't have definitive outcomes to base your decisions on. I have been doing lots of research, only to find that there are no "hard" facts, and there is a tremendous amount of variation in the side effects for those who have lymphanodectomies and those who take Interferon. I wish it was simpler, lol!
Ultimately, I am basing my decisions on both the research data/medical articles I am finding online, as well as the first-hand experiences of patients who are sharing them on the web. It seems to provide a good balance to base decisions on!
I hope this helps!
Lynn
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- January 14, 2012 at 1:56 pm
I was just diagnosed with Stage IIIa as well, and i understand what you're going through! I had one positive sentinel lobe in my groin that had a very small amount of microscopic mets. I have an awesome team at the Washington Cancer Institute in Washington, D.C. and they advised doing the lymphanodectomy..
My surgery was scheduled for Jan. 27, but they called yesterday with the option to move it up to this Monday, which I gladly accepted! I was concerned about removing the lymph nodes because of the issues with lymphadema and dealing with the drain, compression stocking, etc. and then decided the hassle and side effects would be worth it if the surgery could possibly keep the melanoma from spreading. If they found that it had spread in a future PET scan, I would be berating myself forever that I didn't opt for the surgery.
I have also come to the same conclusion about Interferon in the past few days, and believe me, I have A LOT of reservations about the Interferon due to its nasty side effects! Unfortunately, it's the only treatment option for my stage of melanoma, and since it MAY make a difference in my survival rate, I'm going to go for it! But I still haven't decided to do the regular treatment or the pegylated interferon yet…
This is a tough diagnosis to deal with because the treatment options don't have definitive outcomes to base your decisions on. I have been doing lots of research, only to find that there are no "hard" facts, and there is a tremendous amount of variation in the side effects for those who have lymphanodectomies and those who take Interferon. I wish it was simpler, lol!
Ultimately, I am basing my decisions on both the research data/medical articles I am finding online, as well as the first-hand experiences of patients who are sharing them on the web. It seems to provide a good balance to base decisions on!
I hope this helps!
Lynn
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- January 14, 2012 at 4:03 pm
Well, the IIIA's are popular! I am IIIA as well, currently in my 5th month of Interferon, and I had all of the nodes removed under my left arm. I do have lymphedema now, but it's manageable with a compression sleeve and gauntlet. No big deal. I elected the removal because there was one node that contained mel cells, and I didn't want to ever look back and think "What if?" That's also the reason that I elected to do the year on Interferon. The initial high dose phase wasn't fun, but I was able to work (albeit at home). Since I started on the second phase of injections at home, I'm doing well. Just tired and headachy. I'm able to go to work and function normally; I just need lots of extra sleep.
Not everyone gets the awful side effects.
Good luck with your decision!
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- January 14, 2012 at 4:03 pm
Well, the IIIA's are popular! I am IIIA as well, currently in my 5th month of Interferon, and I had all of the nodes removed under my left arm. I do have lymphedema now, but it's manageable with a compression sleeve and gauntlet. No big deal. I elected the removal because there was one node that contained mel cells, and I didn't want to ever look back and think "What if?" That's also the reason that I elected to do the year on Interferon. The initial high dose phase wasn't fun, but I was able to work (albeit at home). Since I started on the second phase of injections at home, I'm doing well. Just tired and headachy. I'm able to go to work and function normally; I just need lots of extra sleep.
Not everyone gets the awful side effects.
Good luck with your decision!
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- January 14, 2012 at 4:03 pm
Well, the IIIA's are popular! I am IIIA as well, currently in my 5th month of Interferon, and I had all of the nodes removed under my left arm. I do have lymphedema now, but it's manageable with a compression sleeve and gauntlet. No big deal. I elected the removal because there was one node that contained mel cells, and I didn't want to ever look back and think "What if?" That's also the reason that I elected to do the year on Interferon. The initial high dose phase wasn't fun, but I was able to work (albeit at home). Since I started on the second phase of injections at home, I'm doing well. Just tired and headachy. I'm able to go to work and function normally; I just need lots of extra sleep.
Not everyone gets the awful side effects.
Good luck with your decision!
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- January 21, 2012 at 1:16 am
I was diagnosed IIIa as well last summer. I had a SNB and WLE. The SNB showed a few melanoma cells so a month later I had a complete groin lymphendectomy. I’m having some lymphedema but it’s not too bad.I just listen to my body and rest. I’m now on the peg interferon. It’s no picnic. I’m mainly sore and tired and confused sometimes. I am working full time – its hard and I see that I need to modify my work schedule.Every decision is personal. I just want to make sure I’m doing everything I can to fight this nasty beast. I’m sick of my new normal life but the key is that I’m alive and I’ll take that any day.
best wishes to my fellow 3a warriors!
Brandi
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- January 21, 2012 at 1:16 am
I was diagnosed IIIa as well last summer. I had a SNB and WLE. The SNB showed a few melanoma cells so a month later I had a complete groin lymphendectomy. I’m having some lymphedema but it’s not too bad.I just listen to my body and rest. I’m now on the peg interferon. It’s no picnic. I’m mainly sore and tired and confused sometimes. I am working full time – its hard and I see that I need to modify my work schedule.Every decision is personal. I just want to make sure I’m doing everything I can to fight this nasty beast. I’m sick of my new normal life but the key is that I’m alive and I’ll take that any day.
best wishes to my fellow 3a warriors!
Brandi
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- January 21, 2012 at 1:16 am
I was diagnosed IIIa as well last summer. I had a SNB and WLE. The SNB showed a few melanoma cells so a month later I had a complete groin lymphendectomy. I’m having some lymphedema but it’s not too bad.I just listen to my body and rest. I’m now on the peg interferon. It’s no picnic. I’m mainly sore and tired and confused sometimes. I am working full time – its hard and I see that I need to modify my work schedule.Every decision is personal. I just want to make sure I’m doing everything I can to fight this nasty beast. I’m sick of my new normal life but the key is that I’m alive and I’ll take that any day.
best wishes to my fellow 3a warriors!
Brandi
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