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November 5, 2014 at 10:06 pm #22233klp5005Participant
I was just diagnosed with melanoma stage 1b at two sites – one on my back and one on my leg.
Both were less than 1mm thickness (.6mm and .8mm), non-ulcerated but both had a mitotic level (?) of 2 making them 1b instead of 1a. My surgeon has recommended WLE but recommended NOT doing a sentinel lymph node biopsy because of my higher risk of Lymphedema (30-40% based on the fact that I’m significantly overweight).
Part of me wants to take the risk of Lymphedema just to get the biopsy and know FOR SURE that this instance of melanoma has not spread and I can move on with my life. But I also know that Lymphedema would not be the most pleasant long-term medical condition to deal with for the rest of my (hopefully long!) life (I’m only 28). I asked if there was any alternative that would not lead to Lymphedema, and my surgeon said they could do an ultrasound of the lymph nodes, but chances are slim that an ultrasound would show anything and that biopsy is really the only way to know for sure if the melanoma has spread.
I really am torn – my surgeon said that the chance of melanoma having spread to my lymph nodes is ~5-6%, and that in his 20 years of this he’s never seen it happen to someone with my pathology levels. Weighing that against the risk of lymphedema being 30-40%, I’m having trouble figuring out what to do. Should I get a second opinion? Does anyone know of any clinical trials or possible other courses of action to take that would have a lower risk of lymphedema and still give me the peace of mind of KNOWING that it hasn’t spread? Of course my mind is going to the worst case scenario of it having spread and not catching it until its III-IV.
THANK YOU!November 6, 2014 at 12:27 pm #65787Catherine PooleKeymaster
Yours is a difficult decision to make. I think your doctor is acting judiciously though, considering the lymphedema. Anesthesia may also be risky if your weight issue presents a problem. Maybe this is the incentive to you for a weight management program since that will help your overall survival. Being overweight does increase your risk of cardiovascular disease and cancer. I don’t take this issue lightly since I have strong family history of obesity and worry about my family members with this problem. To deal with lymphedema you should probably go to physical therapy. I would continue to discuss with your doctor. You need to do what will give you peace of mind. Let us know how you are doing.November 6, 2014 at 3:25 pm #65788TreeFrogParticipant Hi klp,
I second Catherine’s concern about the lymphedema, which can be a lifelong consequence. That being said, I’m a conservative person when it comes to surgeries and I avoid them when possible – so that’s just me!
However, about peace of mind, it’s really, in the end, a state of mind that comes from within and not so much from reassurances from without. For instance, some people have SLNB for peace of mind, results come back negative *yay*, but soon thereafter they find themselves worrying that it has “spread anyway.” So really, other methods like meditation, counselling, talking things over with good friends, and sometimes temporary anxiety meds often bring more lasting peace of mind than procedures.
That’s not to say SLNB is the right or wrong choice – just my perspective on the emotional side.
Let us know how it goes – this forum really helped with the emotional side for me!
~WendyNovember 7, 2014 at 2:51 pm #65789RJoeyBParticipantklp5005 wrote:
Weighing that against the risk of lymphedema being 30-40%…
Quick comment (with full disclosure, I never had an SLNB as I was diagnosed at Stage IV before actually having the procedure)… but anyway, my understanding from several sources is that the risk of lymphedema from SLNB is closer to the 5% range. The risk of lymphadema certainly increases as the number of nodes removed increases, up to and including a complete dissection (CLND), but SLNB is a single node, maybe two.
JoeNovember 7, 2014 at 5:42 pm #65790Catherine PooleKeymaster
Excellent point, see the following from the Mayo Clinic website:
Although lymphedema is an unlikely complication of sentinel node biopsy, one of the main reasons sentinel node biopsy was developed was to decrease the chance of developing lymphedema, which is more likely to occur if many lymph nodes are removed from one area. Because only a few lymph nodes are removed, the risk of lymphedema following sentinel node biopsy is very small. Dozens of other lymph nodes will remain in the region of your body where the sentinel node biopsy is done. In most cases, those remaining lymph nodes can effectively process the lymph fluid.”
I actually was leaning with my opinion towards the procedure, since you have two primaries.November 11, 2014 at 10:01 pm #65791klp5005Participant
Thanks everyone for the advice
I’ve looked as hard as I can (hearing “You have cancer” has significantly increased the time I’ve spent on google…) and I can’t find anything to verify the 30-40% risk of lymphedema that the first surgeon quoted. I know his experience accounts for a lot more than what I can find on the internet, but I imagine if it were a significant risk for SLNB someone it would have been mentioned somewhere. This among other reasons pushed me to get a second opinion – I’ll be going to Emory next Tuesday and will hopefully have some slightly more definitive direction.November 16, 2014 at 6:20 pm #65792msue5Participant
I had a SLNB and developed significant Lyphedema after with just 1 lymph node removed. My SLNB was negative but in less than a year found an enlarged node in my groin. It was considered a false negative biopsy since I progressed within a year. So there are things to consider before committing to this procedure. BTW after my groin dissection I had severe Lymphedema and started the massage treatments and after that was completed I used a pump for about a year and then my Lymphedema spontaneously disappeared. Occasionally I get a little swelling and it goes away with elevation or I use the pump a couple of times and it is gone.
Mary SueNovember 18, 2014 at 10:35 pm #65793Bdeck1Participant
Just thought I would put in my two cents: I had stage 1a, 0.7mm melanoma. I did opt for the SLNB. They ended up taking 10 nodes total from two different sites (6 from my right armpit and 4 from my left armpit as the dye tracked to both sides). My surgeon told me the risk of lymphedema was 5%, which was the same as the risk of metastasis to my lymph nodes (5%). He said that a negative SLNB would drop the chance of metastasis to 2%. Although I decided to go forth with the SLNB, 5% to 2% is not a huge drop. So, I think you should have piece of mind either way. I decided to do it for my own personal reasons. I haven’t had an swelling issues afterwards but I am a thin person.
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