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February 28, 2013 at 7:07 pm #21062
I saw the melanoma oncologist in San Francisco yesterday. I have stage 3a, original tumor 0.97mm, Clark’s 4 with 0.1mm micromets to the SLN. He recommended complete axillary dissection with no further treatment but scans every 3 months.
The surgeon who did my WLE and SNB told me that taking out the axillary lymph nodes isn’t helpful most of the time for micromets as it causes lymphedema, increased risk of infection and I wouldn’t be able to use my (dominant) arm much after.
I’m really freaking out here. I don’t want to risk cancer spread but the thought of lymphedema and not being able to use my right arm much is a poor quality of life. I do have 2 kids I have to tend to and I don’t know how I’ll be able to with all the complications that go with complete axillary dissection.
Has anyone in my boat NOT had the surgery and just “watched and waited?” I sure wish there were a way to detect lymph involvement besides this.February 28, 2013 at 7:17 pm #59373Catherine PooleKeymaster
The node with the micromet has been removed, correct? Did they take a cluster around that too? I would think a partial node dissection would satisfy both the idea of making sure there are no other nodes and prevent a lot of the long lasting lymphedema. Other folks have chosen this path. The studies aren’t in yet though as to which is better, but they are studying whether full node dissection is overkill. And scans every three months seems excessive as well. Can you get another opinion?February 28, 2013 at 7:42 pm #59374 Yes, the node with micro met was removed. I think I’ll get another opinion to see if taking out just some of the nodes is a reasonable option. Problem is, I understand pathologists don’t look at non-sentinal nodes as carefully, so I might not know if any of those have micromets. I hate being in this position!March 1, 2013 at 1:54 am #59375TreeFrogParticipant Hi Bunmom,
If I were in your position, I would definitely get another opinion. There is no great rush to choose a treatment. I have heard the same as Catherine has – that they are currently studying whether complete dissection has any benefits over partial dissection, and how it stands in relation to “watch and wait.” Different doctors have different opinions and insights about the matter.
Perhaps there are other members here who could suggest good “second opinion” docs in the San Francisco area, or elsewhere in California?
~WendyMarch 1, 2013 at 2:42 am #59376johnbilParticipant
I had positive nodes on both sides (2 of 5, and 1 of 2, 1.4mm, 1mm and 2.8mm). Nodular mel, 14mm Bres, ulcerated, followed by a 7mm local recurrence, Mitotic 12.
My surgeon felt that there wouldn’t be any curative benefit to the double dissection. And I agreed, after much soul searching. As of January 18th, I’m watching and waiting. CT scans again on April 11th. Hoping they look good!March 1, 2013 at 12:12 pm #59377bubbasmommaParticipant
That your doctor recommended complete dissection is what I find concerning. Superficial I believe would be more approrpriate. That is what I was offerred on the left groin, which I ultimately declined. The SNB was bad enough for me- I had an open, leaking wound for over two months. When my doctor offered me superficial lymph node dissection and in the same breath told me that it doesn’t change the odds for surviva, along with the risks of the surgery alone, I felt it didn’t make sense. My lymph nodes were never palpable to begin with and looked normal, even with micromets in one of them. I also feel my lymph node did it’s job by encapsulating a few bad cells. They have no way of knowing if those micromets are destined for destruction. I have a friend who was just over 1mm in size for his melanoma and his doctor does not recommend lymph node dissection for under 1mm, so you see there are plenty of differing opinions out there.
I started a vitamin regimen in August 2012. I take a muli-vitamin (6 per day), a fruit and vegetable supplement, vitamin D, Curcumin, Vitamin C, Vitamin E, fiber, a probiotic, CoQ10.March 1, 2013 at 8:32 pm #59378Prd10Participant
I have to agree on seeking another opinion. I had a much larger tumor and was offered a study with ultrasounds. For me it was also in my dominant arm and I had a baby at home. My oncologist (center of excellence melanoma dr) assured me with the study the ultrasounds would detect the lymph nodes when they are still small, quick enough, etc. He did not in any way push for the study but offered it as a good alternative to clnd.
The study had two arms one group gets dissection and the other gets ultrasounds every three months. Only 20 percent of people with a positive lymph have more cancer in the nodes, which means 80 percent of the time it’s unnecessary. That gave me some assurance w the study and I was assigned the ultrasound arm. I did have a recur 18 months into the study. Really sucks. With that being said the ultrasound picked up the nodes. It was still small and only time will tell of it was “in time.” I have since had clean scans and hope like heck it continues that way.
The surgery itself wasn’t as bad for me as I was prepared for. Seems like axilla is easier than groin. I am 6 weeks out and have great range of motion and almost no swelling. My baby is now 2, and very big so carrying him all day is no longer possible but we have adjusted. I don’t regret doing the study at all. I can’t remember the name of it but it’s run through John Wayne cancer institute. Hope that gives you some perspective on doing both watch and wait and the clnd.March 2, 2013 at 1:15 pm #59379Catherine PooleKeymaster
Excellent place to study this as Dr. Morton is the pioneer behind the Sentinel Node Biopsy. I do believe less radical surgery will be our future. But doctors/patients alike get very aggressive about melanoma because it does misbehave!March 4, 2013 at 1:26 am #59380XCguyParticipant Axillary dissection is not as bad as a groin or neck dissection. I had it done after reading some medical journal write-ups that made it sound as if it offered some long term benefit. You will be pretty much useless for about 2 weeks after the surgery, but afterward the recovery is fairly quick.
The picture being painted for you sounds much worse than it really is. I understand that some people get lymphedema after this surgery, but I have not had the slightest problem with lymphedema. My left arm was weak and limited in mobility for about 4 months. But with time I have recovered almost my full range of motion and strength.
I’ve seen comments and statements that seem to indicate that the full dissection doesn’t offer much long term benefit. In my case, I wanted to know if anything else was affected other than the one sentinel node.
As far as the pathologists not looking carefully at all the nodes removed in a full dissection, I find that really hard to believe.
It’s a tough decision.March 4, 2013 at 4:18 am #59381
Thanks to all who posted. My husband and I have been scouring the internet, reading research and are finding that this decision isn’t a simple one. I have an appointment with my surgeon tomorrow to discuss this, and I have quite the list of questions!
XCguy–It is true that pathology does NOT examine additional nodes as carefully as a sentinel node. As it was explained to me by 2 oncologists and the surgeon, the sentinel node is chopped up and examined very, very carefully to determine any disease. In my case, they found a melanoma spot that was 1/10th of a millimeter. They just don’t look for spots that small when a whole axillary dissection is performed, they are looking more for macromets and not cutting up each node as small as the sentinel. This does concern me a bit, but I’m not sure there’s anything I can do about it.
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