More discussion about melanoma. Talk me off the ledge

momand2kids

So now that I have had melanoma. I see it everywhere found a mole on my chest that looks strange. Sent pics to derm. I know not to worry until there is something to worry about. But geez. Can you get Meka I'ma 2 times in one month? Need some people talks. Am at younger daughters college orientation and I want to enjoy i

momand2kids

sorry-I need some pep talks--not people talks!!! I am a little better and less whiny!!!

EuroAmerican

Melanoma - early stage has 95% survival rate stage 1. 100% if it’s stage 0. It’s very unlikely you will have another Melanoma. You need to see a Melanoma specialist. Don’t go to a regular dermatologist. See a Melanoma MD who only sees Melanomas. The standard US care is every 6 months. I had 2 cancers at age 39 in 1 year. One of them was Melanoma. This is 4 years ago. I will see a Melanoma specialist every 6 months. I have a piece of mind that she only sees Melanomas. Because a lot of dermatologist miss them. Hope that helps

momand2kids

Euro

thanks. I do go every 6 months and now I will go rvery3-4 months I was planning to talk to inc in July about whether or not I should move to a dans Farber dermatologist. Mine is good. Has taken lots of things off over the years. But we both missed this one. Thanks fir the reassurance on this new mike. It looks suspicious but hopefully it is nothing

Does your melanoma specialist do any sort of scam?

edj3

momand2kids been living that for nearly two years. It's such a scary cancer, to me far scarier than my breast cancer.

After the initial dx and surgery, I started noticing EVERYTHING. I had a spot on my eye lid that I still swear is new and boy did that freak me out. How do you do a wide area excision on an EYE LID?

Fortunately, I'm feeling less stressed now, although I know I'll get anxious before the next check in September especially now that I've got breast cancer.

But EuroAmerican is right, early stage prognosis is excellent. I don't know that I agree you'll never have another melanoma. As my dermatologist said to me, now we know my body's cells will produce this so now we stay super diligent and aware.

I used to live in Boston and if I had the opportunity to go to a derm who specializes in melanoma (assuming DF offers that, right?), I would absolutely do it.

momand2kids

ED thanks for the response-I completely understand what you are saying-- when I saw this thing on my chest I flipped out-- how had I missed it-kept comparing it to the ABCDE pictures- convincing myself it looked the same-- I did send a picture to my derm and i will be there anyway on Friday to have a re-excision.

One thing I have learned from breast and thyroid cancer is that I have to be careful not to borrow worry.... and worry about something that has not happened yet. I did join a message board for melanoma folks and that has been instructive and interesting and reassuring in terms of my dx.

I did also look up the Dana Farber skin cancer group-- I am going to ask the group if they have any recommendations of any docs there-- I think I will bring this up in my July oncology appointment for my 11 year check up for bc!!!

all this said,I am concerned about this mole (which had to be there 2 weeks ago at my skin check-he saw it- and he did not point it out- so that either means it is nothing or he missed it) I think my derm is great and he has historically taken lots of things off- but he (and I) missed the melanoma on my arm and I am afraid we will miss something else-- so a consult with Farber may well be in order. I have to move a little slowly- I have my colonoscopy in July along with my onc appointment--can only deal with one thing at a time!

Ed, I agree- there do seem to be recurrences which is why vigilance is so important--- I feel like I am vigilant on so many levels with BC and thyrod and now melanoma--- feels like a full time job which is an addition to my already full time job---sigh......

I will keep you posted thanks again for the support.

edwards750

Bless your heart mom - my brother’s melanoma was found by the lady who cuts his hair. He thought he just needed to change shampoos. It was like a bruise on his head. He went to a dermatologist who told him it was nothing but my SIL insisted he get a second opinion. Good thing she did. The first doctor totally missed it. It was melanoma. That was over 18 years ago. He’s fine. Btw he is fair skinned blond and blue-eyed. His second doctor said if you have burned even once you are at risk.

Good luck!

Diane

AMLMom

Im passionate about this topic. Has anyone heard of an organization called the David Cornfield Melanoma Fund? If anyone is interested, I encourage you to watch the video “dear 16 year old me” and share it widely. It is award-winning and has saved many lives. Best wishes

momand2kids

Thanks all-I am going to talk to the nurse navigator tomorrow--I am thinking I may want to move my follow ups to Dana Farber where I do my bc stuff... My derm is great- he has caught alot of things that were not melanoma, but this scare has me thinking differently- there is no urgency- but given that I seem to produce unusual moles, I think for the long haul it would make sense... amazing how many people have this-my derm says it is all from our childhoods (this response to my lament about how i have always been a sunscreen person, never lay out on the beach, etc, etc.... ).

edj3

momand2kids I've always had moles. That's what my body does, make moles. Seriously. And moles are great breeding grounds for naughty cells.

I think going where you're 100% confident in the vigilance and care is critical to your well being. Stress kills just as much as any disease.

EuroAmerican

Sorry I am from Europe / English 2nd language. I didn’t mean that you can’t get another Melanoma. You can but if I remember correctly 10% of that is to have another Melanoma. I think seeing a Melanoma specialist is important. My dermatologist misdiagnosed my Melanoma got 5 years. It was on my chest and diagnosed by a breast cancer surgeon

edj3

I found an article from DF on diet for melanoma--thought you might find it useful (I know I did).

https://blog.dana-farber.org/insight/2015/06/what-is-the-link-between-diet-and-melanoma/

santabarbarian

I had a melanoma about 20 years ago, and one last year. I get head to toe skin checks. Initially 3 x a year, now 2x a year. Both in situ. Melanoma is scary, but in my experience it has been find-able and treatable. Good luck!!

momand2kids

Thanks all- I am a little calmer. I will have the re-excision on the non-malignant mole on Friday- have them look at the one on my chest and then try to chill. I did join the Melanoma Research Foundation to be in touch with others that have had that dx-it was helpful. I am now trying to find some gel, etc that might work on the scar which is on the back of my arm and slightly unsightly, figuring out if I want to move my melanoma care to Dana Farber and if I want to pursue the scan that someone mentioned here.... But, I appreciate your good words and positive melanoma experiences. I do feel very fortunate and like I am being really vigilant.

momand2kids

Back with an update-went in for a wider excision of the mole (non-malignant) on my side. She also looked at the mole on my chest and one on my knee that I found the other day--- she biopsied both. She thought they were unusual but seemed unconcerned about melanoma-and I supposed she is right since I literally just noticed them-- the one on the chest is a concern to me... anyway- I am all bandaged up. I will know more on Tuesday-- While I am happy that these things are being dealt with, it feels never-ending-- I am full of freckles-- everything now seems like a risk. I know that will subside (one of the benefits of having had cancer before) but boy, it is a lot to deal with. thanks again for your support and great advice. On the upside, no matter what they are they are really early!!!

She did mention that they are now going to get a non-surgical (she is the melanoma surgeon) melanoma specialist- which tells me that it is on the rise. So I may be able to keep my care there---will know more after my visit at Farber. I did speak to the nurse navigator, but she was a rep for the insurance company--I am sure my name came up because i am using my insurance pretty liberally!!! I figured it out when I mentioned the dermatology scan I had heard of and her first comment was "that is probably not covered"... sigh... I told her I knew that --- just thought as an oncology nurse she might be interested.

Anyway, at least I am doing something about these things-I just cannot believe how these things pop up-I guess the good thing is that they are on my skin and I can actually see them as opposed to inside my body where I have no idea what is going on.

Thanks again-will keep you posted.

edj3

I'll be interested in hearing what you learn about that scan. My next dermatology appointment is at the end of August. So something else to get a bit clenched about, as I know you fully get.

momand2kids

Edj I will-- I think I read about it here- someone said it was $400 and not covered by insurance. It is not a PET scan-not entirely sure what it is or what it is called. Feeling pretty sliced up today but am hopeful that these things are insignificant as they were so early. fingers crossed.

momand2kids

well,

all 3 of these things were "atypical" but NOT melanoma--thank heavens!! For the one on my knee, she just wants a wdier margin as she was doing a biopsy, not an excision. I will do that later in the month because I have my annual onc visit AND . a colonoscopy in the middle of the month. Note to self--no more appointments in the summer!!!! I am so relieved though- one less thing to worry about for the moment. Going to have my h take pics of very part of my body with moles so I can see what they look like over time.

the one on my knee that I found last week when shaving my legs--well I don't think that was there 6 months ago.... and the one on my chest-- I never noticed it before which means it changed recently. Again, grateful that they are atypical but not a skin cancer. One foot infront of the other.... Happy 4th!

AnnC2019

I just got diagnosed with melanoma a few days ago and breast cancer in June. I have had a sore inside my nostril about 8 months now. Scared that could be something. The dermatologist said I need to see an eye, nose, ear doctor for the nose

FarAwayToo

I have family history (Dad - 2 melanomas) and have been followed with dermatologist visits every 6 months due to having multiple atypical moles. My dad goes every 3-6 months, and about every other year they take off an atypical mole that is "severely atypical" - atypia ranges from mild to moderate to severe. I've had probably 10 moles excised by now, but only 1 severely atypical, the rest - half moderate and half mild. I was paranoid in the beginning (my first atypical one was in 2003, with Dad's first in situ melanoma in 2006), but then found an excellent dermatologist who I trusted (I moved since, but found a good one here as well) and it became easier.

I know my moles VERY well. I check myself every month or so and bring up my concerns with my dermatologist. I wouldn't hesitate to call them and get in if I had something new or changing, but for now I feel like I'm almost out of my weird moles

There is definitely some connection between BC and melanoma, and my genetic counselor thought I'd be BRCA2 positive (breast cancer at 40 and family history of melanoma), but I'm not. In fact no mutations in 49 genes checked, and I asked them to add "melanoma genes".

My next derm check is next Tuesday. I'm always a little worried right before, but if I don't have anything that concerns me, my anxiety is not too bad. My derm has pictures of all the moles she thinks are atypical, but if they are not changing we are not removing them. Every time I'm there they take a new picture of these moles and compare to the old one. I honestly think it's crap, because lighting etc can affect the picture so much. I trust more my derm's eye and dermatoscope (a gadget that lets her see all pigment patterns better). I love her - she splits her time between clinical practice and teaching at the medical school and specializes in melanoma, so I trust she is up to date on all new research and also has a ton of experience.

So, my 2 pieces of advice is to know your skin well, and to find a dermatologist you trust. Melanoma is scary, but after you do all your due diligence, you just have to let it go. Kinda like with BC - I did and am doing all the treatment known to work, so I'm trying to let it go and not be in constant fear mode about recurrence (sometimes it works, sometimes not).

Oh, and I never let them biopsy the mole, especially not shave biopsy. If the mole is small, she will do a punch biopsy that takes out the full thickness of the skin and underlying fat with good radial margin. This lets me avoid re-excision if the mole is atypical. But if she thinks it needs to come out and it's too big to take out with a punch, I schedule an excision. I read long time ago that biopsy can leave deeper parts of the lesion behind, and if it's melanoma, the thickness is the most important piece of information.

santabarbarian

Ann I also got diagnosed w a melanoma -- when having chemo! I had a melanoma 18 years ago. Both in situ. Caught fast. A sore that does not heal sounds more like a squamous cell i a skin cancer. That's how they present. I have had them all! Grew up sunburned constantly..... Try not to panic, you will have it cut out and they get a good border. If they offer a MOHS surgery that's what I have had. Good luck to you!