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August 14, 2012 at 11:46 am #20545bubbasmommaParticipant
I’m wondering if there is anyone out there that has decided not to go with lymph node dissection. I have micromest. in one lymph node and the other was clean. Each doctor has said, “it was only a couple of cells.” I am waiting for a second opinion as to whether or not it is truly cancer cells in that node or benign cells- a dermopathologist will be providing the second opinion because the first analysis was done by a pathologist. My thoughts are that my lymph did exactly what it was supposed to do which was capture the cancer cells. So, assuming it’s cancer, does it make sense that I have another 10 nodes removed or could I watch and wait. I am not interested in Interferon. My mole was 1.05mm deep and a mitotic rate of 2. The margins were clear in the initial removal by the derm and as well in the WLE. I find this all so confusing. So I really want to know if there is anyone out there with a similar situation that opted to keep the lymph nodes. Lymph nodes are there to fight diseases, so it concerns me that removing them will take away that ability. They have talked of taking the superficial nodes, while leaving the deep nodes. Thanks for your time.
MichelleAugust 14, 2012 at 1:14 pm #55888LinnyParticipant
Removing lymph nodes from an area will not take away your ability to fight disease. There are lymph nodes all throughout your body and they’ll just pick up the slack.
Lymph node removal can result in lymphedema for some people. It’s a swelling in the extremity closest to where the lymph nodes were removed and it’s caused by impaired flow of the lymphatic system. It’s a manageable condition when caught early.August 14, 2012 at 5:37 pm #55889washoegalParticipant
Michelle, They are currently studying whether or not Ultra-sound works just as well to monitor the remaining lymph nodes. If you had a micro-metastasis it certainly is worth consideration but I would only do this under the care of a very experienced Melanoma Specialist.
I had 2 lymph nodes positive with micro-metastasis and chose to have the remaining nodes removed. I suppose I had all the side affects in the book, wouldn’t quit draining (had drains in for 25 days), developed a sarcoma that burst (ouch), have nerve damage (now very mild), have lymphedema (now manageable). Turns out the remaining nodes were clear! Would I do it again…YES. Just for the peace of mind.
MaryAugust 14, 2012 at 11:07 pm #55890Catherine PooleKeymaster
It is still a little controversial as to whether you need all of your nodes removed if you have micromets. Some docs will do a partial dissection or just remove the positive ones. I met a researcher from Germany who was working on research that possibly showed leaving the positive node in the body set off an immune reaction that folks fared better with that. Now that is counter to most American thinking that more is better. England has a longer history of following with ultrasound and not removing the nodes. You do have plenty of nodes in your body, but just how many to remove hasn’t been proven yet.August 16, 2012 at 2:21 am #55891TreeFrogParticipant Hi Michelle,
My situation was quite different from yours, as it was only an SLNB I refused, back in 2010. Still, I had the same feelings as you – my doctors were saying I should have this, but the research I was doing was telling me that things weren’t black and white. I appreciated the support I got on this forum, where everyone understood my reasoning, and some said they would have it if they were me, and some said they wouldn’t! I certainly got some much-needed perspective. I didn’t have the procedure, and I’m still satisfied with my decision.
Your hesitance sounds similar to mine, in that I remember feeling a trust in my body and a sense that I should avoid interfering with it. If you continue to feel this way about it, don’t be afraid to go with what seems right to you. Try to get as many solid facts on your situation as you can (while avoiding browsing outdated or inaccurate data – I know this isn’t easy). You have the support of the members of this forum.
~WendyAugust 16, 2012 at 1:23 pm #55892cohanjaParticipant
TreeFrog, do you get chest Xrays?August 18, 2012 at 12:04 pm #55893Catherine PooleKeymaster This recent study says a full node dissection should be done if there are positive nodes: http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2097432August 22, 2012 at 12:42 pm #55894bubbasmommaParticipant Catherine – Thank you for posting the link to the article. I am a researcher at heart, so I like to have as much information as available and this is certainly helpful. Thanks again, MichelleSeptember 6, 2012 at 1:50 am #55895GaylaBParticipant I am 1 week past the total node dissection- right groin. Mine was a SNB that couldn’t be determined if micromets or nevus.
The complete dissection is MUCH worse than WLE and SNB-
No where near walking, drain in leg, EXTREME pain and I was in great physical shape prior, looks lke a LONG road to recovery!
Keep me posted on your decision- I struggled with it as well but needed the peace of mind- I don’t have the path results from the complete dissection but PET was all clear
Stage IIISeptember 11, 2012 at 4:08 am #55896GaylaBParticipant
Path results in – ALL CLEAR:).
Back to surgeon tomorrow – still lots of pain, pretty much helpless, but ok with my decision- time will heal:)
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