Melanoma Support Group

Hi Everyone,

My name is Debbi, I am 43. For about a year now I have had a freckle on my lower right leg that started getting bigger, changed shape and color. I went to my doctor last week and had it removed. He called me yesterday to tell me that it was a Melanoma, so cancer cells were found in the sample he took. I am devastated to say the least. I now need to go to a dermatologist so he can take a larger sample of the surrounding area and test it to make sure that all of the cancer cells were removed with the 1st biopsy.

I am so scared. I have 4 kids and the thought of leaving them before they are even grown is just killing me. Is this kind of cancer easily cured? What do stages mean?

Debbi

Hi, Debbie.... It sounds like you're very fortunate, it was caught very early, and you will be around to see your kids grow up!!!!

Stages of cancer, I'm no expert, but here's what I know about it.... Stage I means localized, no spread to anywhere else.... Stages 2 & 3 means spread to lymph nodes, at the very least.... Stage 4 is metasticized, meaning it's spread somewhere else in the body. That's when it kills you. It's almost NEVER the original site--it's where it goes after that that creates the killing problem.....

You need to have a PET scan done to evaluate your entire body for cancer. PET scans are painless, but very expensive. I hope you have insurance.....

Typical removal for melanoma is surgical--called 'WIDE EXCISSION' for a reason.... Mine was on my FACE.... They cut the entire right side of my nose off, and about 25% of the right side of my face..... I went thru four rounds of reconstructive surgery....

Yours is only on your leg? Thank your lucky stars....

Please feel free to PM me if you want to.

Hi WARHORSE and thank you for responding,

Wow that is quite a bit of cutting that they did to your face! I definitely am lucky that it is only on my lower leg.Since I have found out about the cancer I have been a wreck. I will start crying for no apparent reason, I try and keep the kids from seeing me because I have not told them anything yet because I don't want them to worry.Everyone is telling me to stay positive, but it is flippin hard when my brain is coming up with these terrible scenarios that are scaring me.

Your message did make me feel a lot better, it was caught early and I am sure I will be fine. I just wish my brain would shut the hell up and realize it too!

Debbie: You can research my original post from a few years ago, if you have the energy. If not, here's the short version---There are many different types of melanoma.... Lucky me, I had the rarest form of all.... It never presented as a mole, simply a pushing out of the right side of my face because something was growing UNDER the skin....

Desmoplastic melanoma is a very slow-growing creature, but has the highest fatality rate--because it is often not found until too late.... I was very fortunate. Mine was caught early before it metasticized.....

However, even after the WIDE EXCISSION surgery, it recurred 18 months later on my nose. Perfect timing, according to research.... OK, here's the really WEIRD PART.... After a positive biopsy and the surgeons feeling my face, verifying the tumor and another PET scan, something amazing happened....

It took three or four months, but I experienced a complete, 100% spontaneous regression of the tumor--GONE, completely gone (proven by subsequent PET scans). Previous evidence suggests that this is possible with at least 20% of melanoma tumors.... physical science still doesn't know why, but they know it can happen. I was going to the University of Miami at the time it happened, and both surgeons told me that they had read about it but never actually witnessed it happen before. They're clueless as to why. SOMETHING kicked my immune system into overdrive, and I did absolutely NOTHING to trigger it.

All further surguries were cancelled, and to this day the only thing I regret is that no one wanted to study my case any further.

Debbie: Tell me what is going on.... You've been sent to a dermatologist????? They can only confirm the original diagnoses....

Only an oncoligical surtgeon can cut it out, with the help of a plastic surgeon if necessary... Tell me what is happening......

Debbie: I second Warhorse's post. My Dermatologist found the original mole, which was pink (amelanotic) and immediately passed me on to a cancer surgeon. Often they don't specialize in melanoma but will focus on breast surgery or soft tissue cancers. I have had both types of MDs. The Dermatoligist sees me regularly just to check the old pelt. I hate to tell you this, but three of my recurrences have been subcutaneous, little lumps that showed up. And the lung leison showed up in my Pet/CT scans. I have scans every three or six months depending how I'm doing. And the good news is I am doing fine. But you have to stay on top of it. I check myself for lumps all the time. Oddly enough, the ones I have found sort of said "Yohoo" to me. Body knowledge. I am with a teaching hospital which has its own cancer center. (Free coffee in the waiting areas.) Hang in there and answer Warhorse she's had a lot of experience.

Thanks, Brooklyn... We couldn't say anything more important to Debbie than this---You need to go to a TEACHING HOSPITAL for the very best care in the world....

You're absolutely right--my original surgeons were breast cancer specialists, but what that really means is that they're 'oncological' specialists, which means they cut cancer all day, every day. Whether it's in the breast or on the face.... Made me a little uncomfortable in the beginning.... Why am I here in a breast cancer unit???? But these are definitely the 'go to' guys...

They are used to cutting cancer, and working with plastic surgeons to reconstruct... I had four rounds done to try to recontruct my face. These guys are the best of the BEST.....

Hi WARHORSE,

Sorry that I have not gotten back to you.I was sent to a dermatologist surgeon. I had the initial consult with him.He told me that the melanoma that I have is the type that stays on the skin, it does not travel through the blood like the "dangerous" kind. Anyway I am scheduled for another excision of the area next week. The last thing I want is a larger area cut out of my leg.He is doing it in his office, obviously no sedation, just numbing around the area. He does these regularly. Because they are pretty sure that they got it all the first time, and the only reason that they are doing another cut, is because the cells were so close to the edge of the biopsy.

Post edited by: WARHORSE, at: 10/02/2010 12:42 PM

Debbi: I will try to address your questions/issues as best as I can... I will start with the usual disclaimer.... I am not a doctor, nor do I play one on TV, but have lived thru most everything you are describing....

#1. Were your original bioposy results read by a dermatopathologist? This is a pathologist specially trained in reading skin scraping biology results. You should have a copy of that report, and if not read specifically by one of these trained individuals, you should INSIST on it. They have more training than a regular pathologist.

#2. There is no such thing as a 'dermatologist surgeon'. Dermatologists are skin specialists. They are capable of diagnosing skin problems, and are able to remove basal and squamous cell skin cancers, Nothing more. Melanoma is a whole nother beast.

#3. "He told me that the melanoma that I have is the type that stays on the skin, it does not travel through the blood like the "dangerous" kind." Sheer lunacy. There are many different types of melanomas, but they all share one thing in common--they will ALL eventually metastisize to somewhere else in the body and eventually kill you. You need to find out exactly what type of skin cancer you have.

#4. He is doing this in his office? The only real removal of melanoma MUST be done in either a hospital OR or, at the very least, in an outpatient surgical facility. There MUST be a pathologist on call, so they can determine whether or not 'clear margins' have been achieved. It's also a really, REALLY good idea to have local lymph nodes excised to determine whether the cancer cells have spread. It is the first place they go to.

#5. You really, REALLY need to have a PETscan done to determine if there has been any metastisizing to other places in the body. It is the only way to know for sure. If your insurance company is trying to cut costs, SHAME ON THEM....

But I really think you need to find out what type of skin cancer it really is. IMO, any dermatologist who tells a patient that they can cut melanoma out in their office is.... I can't say without offending people.