Stage 3b Unknown Primary

I am Stage III B with an unknown primary. I had a complete lymph node dissection in my left arm pit. I was diagnosed in 2010. Is your sister seeing a melanoma specialist? Unknown primaries affect about 10% of us, so it's not a very high number. You absoutely want to be seen by someone with a LOT of experience in treating melanoma. Not sure where your sister lives, but it would be worth her while to see someone at a melanoma center at a place such as Johns Hopkins, Sloane Kettering, Abramson Cancer Center, Dana Farber, etc., for an opinion.

Treatment options have changed a LOT since I was diagnosed. There actually are some good options for those at Stage III. I believe that Opdivo and Keytruda are offered now for Stage III melanoma. They are worth asking about because there have been studies done that would seem to indicate that they do prevent recurrence. So, I was a bit puzzled at the comment that was made to your sister. Also worth asking any doctor is whether there is a clinical trial available for Stage III resected melanoma. 

The theory with unknown primaries is that the melanoma did start out on the skin but the immune system attacked it and eliminated it on the skin but some cells managed to escape and made their way to a lymph node. There are studies than indicate folks with unknown primaries have an edge over those with known primaries because the immune system was able to recognize the cancer cells and attack them. So, having the immune system as an ally is a very good thing. 

Sorry to hear about the auxiliary nerve being cut. I had a very similar surgery 2 years ago and I can raise my arm but only if I angle it a certain way (move hand to center of stomach before raising). My shoulder and that side of my neck don’t have any feeling/sensation but that isn’t a problem.

My initial surgery was also a neck dissection, also for an unknown primary (my swollen lymph node was in the cervical group within the neck). Afterward I switched Care to a larger (more experienced) cancer center. Please don’t take offense to this but it sounds like your sister is not a patient at a certified (melanoma experienced) cancer center (for example, neck dissections are not typically performed any longer. Also, immunotherapies are usually encouraged because they have improved a lot in only the past 12 months). Please consider asking you sister to get a 2nd opinion at research university’s medical center (there should be one within at most 2 hours drive from anywhere in the continental US).

If I may chime in, I am stage 3 and my doctors choose not to resect my lymph nodes (in groin) straight away and put me on targeted therapy first so that the tumor will reduce in size. After a month, it has already started to do so.

My oncologist is now thinking about switching me to immunotherapy before any lymph node dissection is performed. He says it is my best chance at being eventually cured and preventing recurrences. I'm from Canada and if I get the surgery, then immunotherapy as adjuvant treatment (outside a clinical trial) is not an option anymore.

Of course the choice will be mine in the end, as it will be for your sister. For myself, being 39, watch and wait is simply not an option.