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SandyK112
@alan112

Posts: 8
Joined: Oct 15, 2015

Melanoma: genetics and recurrence

Posted by @alan112, Jun 7, 2017

I was diagnosed with stage 1a melanoma (superficial spreading) in July of 2012. Just curious as to see how many have had a recurrence after being diagnosed. Also, there is a strong family history of melanoma on my Mom’s side. I was referred to genetic counseling and genetic testing was suggested, but my insurance denied the request, so no testing has been done. I have been very vigilant about taking care of my skin, but still fear a recurrence.

REPLY

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.

@colleenyoung

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?

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

@cynaburst

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.

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When were you first diagnosed?

@cynaburst

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.

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

@cynaburst

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.

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@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)

@cynaburst

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.

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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

@lynnkay1956

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

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@lynnkay1956 – from my research, superficial spreading is the most common kind of melanoma. As far as I am aware, immunotherapy would never be offered for someone who is just stage 1. The only treatment, as far as I know, is wide excision. And then, depending on the depth of the lesion, possible sentinel node biopsy.

That is what I have had done both times. As for follow up, I see a dermatologist at least twice a year (I actually go 4 times, but I think standard of care is every 6 months). My melanoma specialist also does blood work and takes a chest xray when I go to him, which is supposed to be yearly, but the dematologist screening is really all that I have understood to be protocol for early stages. Of course my last lesion was 2008 so I haven’t researched again lately, but I can’t believe that they would do anything more for Stage 1 patients.

@lynnkay1956

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

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My pcp (in Red Wing) removed the entire mole in the office. When the path report came back as melanoma, I had surgery to check for clear margins (which there were from the original biopsy). I was then referred to Rochester to see a dermatologist. Never has a chest x-ray been mentioned, or any type of blood work.

dx: Clark level 2

you are correct about it being the most common, however it can be highly aggressive…Eric Sizemore was the first warrior I knew that had it…you can see some of his videos at the following. I am not certain what stage they are approving for Yervoy but some changes have recently taking place regarding immunotherapy. They used to make folks wait until Stage 3 but they have realized that this was too late. You may be able to check it out at ASCO in the abstracts http://am.asco.org/daily-news or through some of the clinical trials at Cancer.gov Eric had superficial spreading and it is the thing nightmares are made of. @

I just did a little research and found the following info.

Immunotherapy is still only for metastatic melanoma. Stage 1a by definition is NOT metastatic. The 10-year survival rates is 95% for stage 1a which Alan and I are. Honestly, I found that reading and learning all about later stages of MM and immunotherapy was counter productive for me. Metastatic melanoma is an entirely different animal, and all it did was to freak me out when I read about later stage patients and therapies.

The most impt. thing for people with early MM is to get their skin checked regularly following wide excision with clear margins. The rest is something we will hopefully never have to learn about.

@lynnkay1956

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

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This was the biopsy report back in 2000 Diagnosis: Malignant Melanoma. Clark’s Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Suggest re-incision.
I did have a chest X ray during that time and a CT scan. They seldom use Clark’s level anymore as a measurement. http://www.skincancer.org/skin-cancer-information/melanoma/the-stages-of-melanoma/guide-to-staging-melanoma

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