Melanoma & Skin Cancer support: Introduce yourself and connect

@leigh17 @llray @birdman518 @bluehorse10 @grandmar @charlene9 @grammato3 @twocents @pandre01 @dontteachhate45 @me1229 @lk3xs @mermaid7272 @williamfh @marye2 @marywc @mccampbell @rebmar @mlenney167 @donnacarp @jnb @elderly1 @jimbo3419 @suzanne2 @groversgirl @jmarie711 @zeedee1 @edwardsruth @mustsell @zygote @gustavo1975 @drhill @kenc @lisamae @bosco702 @seniormed @jc76 @annabach @dreams @baz10 @cfbauer @kjacko @ch47 @keithl56 @sup7401 @marem60 @celia16 @katgob @louisejewell @jmtor @fdixon63 @cdeldeo @lmonsalve

Check it out. There's new group on Mayo Clinic Connect dedicated to Melanoma & Skin Cancer support (https://connect.mayoclinic.org/group/melanoma-skin-cancer/). Your melanoma and skin cancer-related discussions have been moved to the new group. Be sure to follow the group to get notified of new posts.

Let's get connected. Why not start by introducing yourself? What is your experience, or your loved one’s experience, living with melanoma or skin cancer (i.e., what type, how long since diagnosis, how it’s managed)?

Sounds like a good group

Hi my name is Char. I have had melanoma on my leg and just recently in my lung. The middle lobe of my right lung was removed 4 weeks ago I will be starting immunotherapy on the 31st of march.

My name is Kathy, and here on this site having had breast cancer and then a BMT last April. I always thought skin cancer would be what i got. Basil cell i have had cut off or burned off since I was 35. Dozens of them taken off. In my family, my mom had melanoma when she was about 28. She had just given birth to her first daughter, my sister. She had what i remember being 200 moles burned off her body.
My Dad in 2000 was mis diagnosed with a squamous. Its metastases and after chemo and radiation treatment he sadly still passed.
My family is red or blond haired, freckled, light eyes, light skin and a whole lot of sun exposure when we were young. On my favorite dermatologist's office wall, he had a chart on if you have these statistics, your chance of skin cancer is greater. I hit five and the 6th was close. I would say my entire family.
Most recently my genetic test. Three of my family have the same BRCA2. My geneticist thinks my mom may have had the mutation too. Possibly my dad as well. They both passed, so we will never know.

JC76 here: Glad to see we have a specific group for this. With skin cancer being the most common type of cancer I am sure there are many of us out there.

I grew up in Florida (I am 78 now) where getting a sunburn over the weekend was a sign of how much fun you had. That continued into my 20s and 30s with playing tennis without a shirt, surfing, skiing, etc.

Well, paid the price when in my 50s I had my first basal cell on my chest. I started using sunscreen only to read later that an ingredient in most sunscreens was a cancer causer. At least they changed the formula.

I have had about 8 basal cell cancers (BCC) and one squamous (SCC) cancer. All my cancers were removed using Mohl's except for my first one over 20 years ago when I don't think they had MOHLS. All my recent cancers have been diagnosed and treated at Mayo Jacksonville.

Every visit to dermatologist results in burning off pre cancers and most of the time will get one biopsy. So have a lot of experience (sadly) with this along with Mohl's surgery. If I can help others with my experiences with this be glad too.

For the last 5 years I have been using sun block (zinc based) instead of sunscreens and I think that type of sun protection helps but all those decades of sunburns are going to haunt me. I know more skin cancers are coming but I am prepared for them with great care from Mayo Jacksonville.

I had one spot of BCC on my temple several years ago that was removed with Moh’s at Duke. I regularly see Duke dermatologist and am alert for any potential problems.

I now wear sunscreen (I stopped tanning many years ago. I’m fair skinned and light blue eyes (Northern European heritage), but still tanned well. Sigh.
I would be interested in the best sun protection now.

Many thanks, Colleen, for starting this group and allowing those of us affected the opportunity to get to know one another to share our stories, seek and provide support. It's so important considering how prevalent skin cancer is: approximately 9500 cases diagnosed each day in the US alone; annually there are nearly 105,000 new cases of melanoma per the Amercian Cancer Society.

Personally, I've learned not to dwell too much on statistics -- they can be frightening! The odds had been in my favor NOT to develop a recurrence or metastasis following my initial melanoma treated with a WLE in 2020 yet here I am, having been diagnosed this past November with Stage IV metastatic melanoma due to a positive lung nodule. I'm encouraged by advances in treatment in general and my response in particular (complete resolution of the nodule after only 3 Keytruda infusions!) but need to complete the two years prescribed to help prevent chances of further spread. I'm learning to balance the way I formerly lived my day to day life, make some adjustments to short and long term planning, and have basically found my happy medium.

Hi to all! I am @gingerw, a volunteer mentor here on Connect, but more importantly, a fellow melanoma and skin cancer patient. In 2008 I had an amelanotic [no coloring] melanoma removed from my right forearm. It took 4 different doctors to finally get one to take me seriously, as that form is not very common. The scar from the flap surgery they did is 32 stitches!

In addition to that there have been many basal cell and squamous cell carcinomas removed. A notable one was in the center of my forehead, where it now looks like my third eye is there! Each eyebrow hid squamous cell cancers, and there is a cool looking lightning-looking jagged scar from anodular basal cell removal between my throat and collarbone. Add in MOHS scars on each arm, nostrils, and so on.

Wearing a good sunscreen everyday can be a pain, but helps to minimize the chance of more skin cancers. I truly suspect I will never be free of the threat of them.
Ginger

thank you for starting this. i've only had mohs once a couple of years ago on the back of my knee and it was removed without having to take more off. i'm medium complextion, but every spring from age 13 until probably 50 i got at least one good blistering sunburn. i actually did it on purpose as when it peeled off it started me on my deep dark tan that i kept until late autumn. finally started using sunscreen in my forties only on my chest, face and shoulders. i still tan at age 67, but not to the extent of blistering sunburns. i live in alabama so we get a good 8 months of suntanning. i've got so many age spots, freckles & barnacles (as my dermatologist calls them)
i feel like a monster unless i tan. as i've said for 30 years "a tan covers a multitude of imperfections". Still true. the tanning ruined my skin years ago when i was young when i had zero freckles, age spots or barnacles. So, with my medium complextion, the cancer causing burns can't be changed now. so i just keep tanning trying to cover up my ugly wrinkled skin. oh yeah, my chest skin is like crepe paper, bleeds if i barely scratch an itch. just another pitfall of lifetime if burning!

I had to share again. My 1st trip to a dermatologist was to see who my
Dad regularly visited. He was a man of color, retired from the military. He was good but far from where i lived. I saw why my dad went to him. At 35 I had my 1st Basal cell burned off. I must say that as she finished the procedure on my left forearm, I immediately thought who was going to take care of it? I lived alone. I did of course.
As time went on, my 3rd dermatologist i stayed with the longest was retired Air Force and a pathologist. He would head to his office and once showed me once about margins with skin cancers with the slides. He taught me about all three. When he retired another dr replaced him who said the prior dr i had cut too much out. This new dr had nowhere near the experience of my other dr. He also did not remove the cancers; I had to go to the plastics dr for that. a2ndvisit. I did not like that he badmouthed my dr so i did not go back. It was 5 yrs till my next dr visit when i arrived at City of Hope for breast cancer.
Bottom line is that plastic dr had actually lifted the side of my face the basal was on. Even today it has less wrinkles on that side. It was 8 years ago i had something cut off my forehead. It was like a lift. My forehead wrinkles were lessened. Crazy. When someone said i was looking young after losing weight, I thought about the Basal cells removed from my face and neck.
Lastly, i had the MOHS on my nose. Three layers. Very interesting. I was happy Covid was in its later days, I was working from home and many people wore masks. I am now set to go once a year unless something needs looking at.