Melanoma: genetics and recurrence

Hi Sandy, welcome to Connect.
I completely understand the fear of recurrence. I'm tagging other members who have talked about melanoma on Connect. Please meet @texas7777 @lynnkay1956 @cynaburst @0716 @meg4434 @twinskl. You may like to read more about them in these discussions on Connect:

- Malignant melanoma: need to scan? http://mayocl.in/2rVJd6R
- Stage 4 Malignant Melanoma internal http://mayocl.in/2oP9JeJ

How often do you go for a follow-up since your diagnosis in 2012?

Hi Sandy. I have also had two early stage melanomas: one stage 0 and one stage 1a. I have not done nor been offered genetic testing but since I am still middle aged and have had 2 primaries my melanoma specialist said it was quite likely I could have another in my lifetime. I see derm every 3 months and do computer mole mapping.

The first two years, I was seen every 6 months. Then my derm (at Mayo) moved be out to once a year.

When were you first diagnosed?

Not sure who you are asking but for me it was around 2002.

@cynaburst
How long was it between your stage 9 and stage 1 a diagnosis? Also, were they both in the same area?
My derm told me, that due to my family history, my odds of developing another melanoma are extremely high. (I am 63)

Oops - I mean stage 0 (not 9). sorry.

8 years

I knew what you meant! 🙂 and the first one was on my left shoulder. The second one was in the middle of my back. My derm found it almost by accident. She had removed one mole which came back normal, and then 6 mos. later it had regrown, so she removed again. She was SHOCKED to find that it came back as melanoma. She had both biopsies re-read, and I had to have a lymph node biopsy even though it did not meet the criteria otherwise (size and depth) because they were concerned it had grown so fast.

I am a Stage 4 melanoma survivor...I had it removed the first time from my neck in 1991. It came back in same place in early 1995. I waited to have it removed because my son who was then 14 had been dx'ed with a rare and deadly small cell sarcoma and died when he was 16 in 1998. I finally went and had it removed from my neck again in 2000 and returned a couple months later to have 5 SLN removed 9 early 2001). They were all clear. Jump ahead to 2009...I had been complaining for months and months something was wrong but no one seemed to listen. In June 2009 I was dx'ed Stage 4 Metastatic melanoma and it was in the lymph nodes and pressing against my superior vena cava. they said nothing could be done back then...but despite the prognosis of 6 months I went on to find my own treatments...I have been NED ( no evidence of disease). Superficial spreading is a horse of another color and highly recommend you ask about immunotherapy ...perhaps Opdivo ...those friends of mine who had it are no longer here. Didn't say that to scare you...but to tell you that there are treatments now available to you that they never had. Yervoy is 4 infusions and it has been approved already...Opdivo may not be approved yet as a prevention...would not recommend Interferon or Leukine injections ...they don't do much as a stand alone treatment and IF they did anything they might postpone recurrence for a short time...nothing more