Anyone have melanoma tied to genetic mutations?
One of our community members is looking for information: “I’m having difficulty finding information/support for melanoma/skin cancer with genetics as the cause. It has been determined that my melanoma is not sun-induced but genetic and, believe it or not, I feel even more isolated.” Does anyone have information to share?
We'd still love to hear from the community about their experiences. In the meantime, I can share this article from AiM at Melanoma: https://www.aimatmelanoma.org/melanoma-risk-factors/personal-and-family-history/the-genetics-of-melanoma/. It provides a good overview, and actually says that much is not known about the exact inherited mutations that can increase risk. They suggest participating in a study if you have a strong family history, in the hopes of learning more. - Nina, SkinCancer.net Team
I was diagnosed with FAMMM, familial atypical multiple mole melanoma, in 2008, by a genetic counselor at my local hospital. I was enrolled in the study, sponsored by the National Cancer Institute, by my dermatologist. It's been life altering, although I'm not sure how much more so than the confusing, overwhelming course my life had already been on since my very first melanoma diagnosis at the age of 23, in 1993. Having Melanoma in the world of "cancers" can be very isolating, as it feels less and less of the people who surround us truly understand the dangers and struggles that we go thru as we navigate this black beast. Further complicate this with feeling like the "black sheep" of the melanoma world, where other melanoma patients don't even understand my plight, full body checks every three months, biopsies, full excisions, etc. The constant fear, anxiety, and depression that a "traditional" melanoma patient may endure with one diagnosis is dramatically multiplied with the excessive amount of dermatology, oncology, CAT and PET scans, as well as whole body wellness with my general practitioner a minimum of 4 times a year takes it toll. As I stated, I've had this information since 2008, and have been going thru this entire cyclical process for over 10 years now.
In addition to knowing you are at a greater risk for developing additional melanomas, many FAMMM patients, including myself, may also be at risk of developing pancreatic cancer, depending on the level of screening and genetic testing done during the study.
I've spent years trying to connect with others like me, thru the internet, Facebook, my own local Cancer Support Groups, etc...and have had no luck. I would welcome ANY connection made with someone who has been diagnosed with this unique challenge, as there is no one in the world who can understand us better than each other. Being able to rely on each other to provide support and knowledge would be mutually beneficial, I'm sure. Best wishes to all....
Thank you so much for sharing your experience, @
. It saddens me to hear how isolated you feel, even within melanoma support communities. I'm going to reach out to the rest of my SkinCancer.net team to see how we can help connect you with others. If you're comfortable sharing your journey living with FAMMM with a broader audience, we'd love it if you'd post your story at https://skincancer.net/stories. It's a great way to raise awareness and help others feel less alone.
How have you been doing recently? I hope well. Remember, FAMMM may be incredibly rare, but around here support and kindness are not. Stop by any time. -Eileen, SkinCancer.net Team
