CSN Login
Members Online: 7

Melanoma-specific support program

JerseyGirl474
Posts: 5
Joined: Nov 2008

I'm born and raised in Jersey, but am the furthest thing from a beach bum that you can get. I'm neon white; I think about sun and I burn (thank you, Irish heritage). I've worn SPF 100 sunscreen every day, year round since my husband was diagnosed with melanoma on November 23, 2005 (it killed him on April 17, 2008). I've gotten exactly ONE bad sunburn my entire life - I was 16, had sunscreen on, but fell asleep on the beach in Wildwood. I'm 31 years old, and I was diagnosed with melanoma on November 10, 2011. It was a small spot on the inside of my left calf right above my ankle. It wasn't anything that stood out to me as being ominous, but when my dermatologist compared it to the photos from my full-body photo mapping that I had done in December 2009, she noticed it was much bigger than it had been 2 years ago. The spot was 2mm wide; I snapped a photo of it with my cell phone while I was waiting for one of the nurses to come take a close-up photo of it. It looked kinda weird, but then again, so did every other spot on me that they took photos of and have said aren't anything to worry about. It didn't scream melanoma; it wasn't raised, wasn't black or blue or bleeding or ulcerated. It had a darker color to part of it, but then again, so do a lot of other spots on me that my dr. has been taking photos of for years. So a close-up photo was taken of this one as well, and I was told to come back in 3 months, and if it had changed at all, she was going to remove it. I went home, but something just wasn't sitting right with me about it, so the next day, I called and scheduled that spot to be biopsied. The biopsy was done on November 2nd. On November 10th at 5:38pm, I got the call. As soon as she said, "got a few minutes?" I knew my gut had been right. And then came the most evil word in my little world: "melanoma." I'm tentatively staged at 1A, but I have a consult with a surgeon in Manhattan next Monday at the 21st because the margins on the area that was biopsied weren't clean. My gut is telling me to have them do a sentinel lymph node biopsy as well; not sure if it's paranoia because my husband had no known primary site and his was discovered after he had a swollen lymph node under his left arm biopsied, but for my peace of mind, I need to have it done despite my doctor strongly recommending against it. The way I figure it, if she did the biopsy with what she thought was a 2mm margin of clean skin after viewing the spot through a dermatoscope and there was less than 0.1mm of clean skin on the margins, who the hell knows what else they're not seeing? I'd rather be overly cautious than not.

And now, the reason for my post here. I went to a support group meeting yesterday and was less than thrilled with the whole mess. All but 2 of the people there (myself included) had breast cancer; about half of them also had melanoma, but I felt like that was just glossed over, like it's insignificant. Someone also had basal cell carcinoma, and it seemed to me like the 2 were lumped together in the same category. We all know that couldn't be further from the truth. It's kind of like Type 1 and Type 2 Diabetes; they shouldn't be under the same umbrella. (I'm also a Type 1 diabetic for the past 22 years.) And I got to wondering: why isn't there a group that pairs newly diagnosed people with people who were diagnosed at the same stage, have been through or are going through treatment, and can more closely relate to what you're going through than someone with, say, breast or liver cancer? There's a group like that for breast cancer patients; it's called Reach To Recovery. It's very frustrating to see so few resources that are specifically directed towards melanoma. Since nothing like what I've mentioned exists, I would like to try to get something organized along those lines. I can't imagine I'm the only one who would find a program like that useful. Anyone else interested?

goff10737
Posts: 1
Joined: Nov 2011

Hey I know how you feel like your cancer isn't that important compared to others. I felt the same way when i was diagnosed with melanoma last year at age 13. They told me I had it after it was supposed to be a normal mole. I was shocked but shruged it off. I didn't think it was that huge until I got much further into it. It sucks so i pray for you that it doesn't get past stage 1 and that it doesn't become more important like mine did

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

Hi Jersey Girl,
I'm from Australia, so I can't help you with support groups in Jersey sorry.
But there are support groups in Australia specifically for just melanoma.
If you go to www.melanoma.org.au, you can find Australian support groups.
There is a guy called Jay Allen here who is very vocal about melanoma. If you google Jay Allen and melanoma you will find he recently travelled to the US to raise awareness of melanoma. He is very strong about setting up support groups here, so a google search may find he has also set up support groups over there.
Good luck, Danielle

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

This site has a lot of information and a very active message bored with a variety of patients at different stages of Melanoma. It has been very helpful:

http://www.melanoma.org/community/mpip-melanoma-patients-information-page

Best,
DF

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network