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February 12, 2013 at 6:46 pm #21019
Hi all. Looking for advice.
I had a tumor removed (14mm, mitotic 12), and then it recurred while waiting for my WLE and SLNB. Recurrent tumor was 7mm in less than a month. They biopsied both left and right armpits, and my left side showed 1 of 2 nodes with cancer (1.4mm), and my right side was 2 of 5 positive (2.8mm and 1mm).
Trying to decide now how to proceed. Don’t really want to get total dissection on both sides!
Two trials are potentially available to me (IPI and BRAF??), depending on whether I’m BRAF positive. But the surgeons think that I might have to have two full dissections, to be eligible. If it were up to me, I’d just have the one side done, the worse side.
Anyone had both done? Advice?
JohnFebruary 13, 2013 at 1:54 am #59141LinnyParticipant
A friend of mine who had inflammatory breast cancer had a total dissection on both sides. This was over 15 years ago. She is doing great and has no lymphedema and no recurrence of her cancer.
When the dermatologist at the melanoma clinic at Johns Hopkins told me the plan was to remove all the lymph nodes from under my left armpit, my first question to him was, why not just remove only any affected ones. He said that if they were to do that, it’s possible that there may be melanoma hiding out in one or more of the remaining ones so my best option was to have them all removed.
You can always get a second opinion. But it’s possible that doc may tell you the same thing that mine did.February 13, 2013 at 12:44 pm #59142Catherine PooleKeymaster
I would get another opinion at a center of excellence. Unfortunately, there could be cells in nodes further down and taking the nodes out can be optimal. If you need this done in order to enter the trials, that is another reason to do so.. I know you concerned about having both sides removed, I would be too. If it has to be, line up a top physical therapist to start with you asap. I’m sorry you are facing this and hope you can find some answers and reassurance from a specialist.February 13, 2013 at 3:41 pm #59143 Thanks Catherine
I’m in Toronto, Canada, and going to the Odette Cancer Centre at Sunnybrook Hospital. My oncologist is Dr. Petrella. They seem to be pretty well regarded. My oncologist said that it is a tricky decision, with no right answer.February 26, 2013 at 10:41 pm #59144
In the end, I just wasn’t comfortable with getting two dissections done. My team feels that they wouldn’t necessarily be helpful with all of my numbers showing fairly aggressive cancer already. Any trials require two full dissections, so I am excluded from those. My choice was then Interferon, or watch and wait. I decided to watch and wait. I’d rather get back to running and cycling, than take a chance with treatments (Interferon, or double dissection) that don’t really promise much, except for a poorer quality of life…
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