Melanoma

(A Deady skin cancer.)

Most people think you get a mole, they take it off and tell you it was cancer and then you live happilly ever after...  And lots and lots of people have had that family doc look at their mole and the doc sais, it's just a mole-don't worry about it. Think again.  Befor Melanoma happened to me, I had no idea how serious it is nor any idea how often the medical profession does screw up.  Melanoma has some different stages... In sito is less than 1.0 mm thick. That's catching it early and 95-100% chance if removed correctly, it will never spread.  That's what most people who encounter Melanoma encounter. The key of treating melanoma is catching it early. Melanoma is a fast spreading cancer. It likes to spread to nearby lymphnodes, the lung, the brain and also the liver.  It's not like other cancers as far as curing it... because their basically isn't a cure if it does spread. If it does spread, it is more deadly than pancreatic cancer. Chemo and radiation do not destroy melanoma that has spread. At this time, nothing really does. There is something called Interferon which helps delay it from spreading, and there is something called IL-2 ... but only 10% of people are candidates for IL-2 and it works on only 10% of them... with side effects worse than chemo or radiation.  About 35,000 people are diagnosed with Melanoma each year... between 7,000-8,000 of them die. More woman are diagnosed, but more men die. It is one of the leading causes of woman in their 30's. !!!  Toddlers, teen agers, young people in their 20's and 30's die from Melanoma.  Although my grand mother had Melanoma, I was not aware of any of this until it happened to me... 

In 2004 I was pregnant. My mid wife noticed a dark brown mole on my arm about as big around as a pencil eraser. She sent me to the local county hospital to get it checked out. The doctor they referred to as "the lump and bump guy"...Dr. Jules Levey; now practicing in West Virginia, said "just looks like a benign nevus, but we'll take it off for cosmetic purposes".  So he burnt the mole off.  It left a nasty looking red mark on me that looked like a cigarette burn. Ick. A couple of years later, the mole grew back!  Dr. Levey was gone, but my family doctor told me "just looks like a mole, those things sometimes grow back, doesn't look like anything to worry about"... so I didn't for a little while. Then the mole changed...it became squishy, then it started to itch and got crusty. It took 6 weeks to get insurance sorted around due to a change at my husband's work with the insurance...then it took 7 weeks for my appt with the dermatologist to come.  This time I went to Dr. Presser in Geneseo NY. Awsome doctor. He did a biopsy by scraping the mole flush with the skin. Didn't hurt at all.  He put a rush on it. He called me back a couple days later at like 8pm to let me know he got the result... it was a 4mm Clarks level 4 melanoma. Dr. Presser explained to me that typically a melanoma this deep is often spread and that I would need to go to a cancer surgeon and the cancer clinic and he had already contacted them and set it up for me (they called me the next morning right at 8am, it was amazing.). Dr. Presser made the hospital send my specimen from 2004 to both his own dermatology pathologist that he uses and to Strong University, and it turns out that it was indeed a .9mm thick melanoma in 2004. The pathologist (Jerry Mendlowski; now in Buffalo NY) had read it so wrong, that they joked that a monkey must have been in the lab at Wyoming County Community Hospital reading the biopsies. Dr. Levey left that melanoma in my arm on 1 side and at the bottom.  He never should have burnt it off...he should have done a proper biopsy by scraping the mole, and then referred me to a cancer surgeon to properly remove the mole, the cancerous tissue around it and also some of the healthy tissue around that. Remember these two monkeys are still in Buffalo and West Virginia, licensed and doing what they do... and so are alot of other monkies around the country. I have found out that both of these mistakes are actually quite common!  Don't let some little ma and pop hospital biopsy anything! Always go to a specialist and be your own advocate.

So now what? First I went to the Cancer surgeon... he scheduled me for pre-op testing and the surgery. He also got a P.E.T. scan aproved by my insurance given the severity of the melanoma I had. The initial pre-op testing all looked great...normal chest x-ray, normal LDH, ect...  but on the day I went for my surgery,I found out the P.E.T. scan was abnormal in my lung. (Remember, melanoma loves to spread to the lungs.) I had surgery on my arm that even involved tendon, and had several lymph nodes removed.

(Really, I was surfing and a shark bit me in the arm, lol not really.)

After that...I was referred to the lung oncologist.  The PET scan revealed an enlarged lymph node in my lung that also glowed (which indicates cellular activity).  He sent me for a Chest CT scan and brain MRI. The Brain MRI was clear. The chest CT showed though that the lymph node in my lung was even larger. We also found out that lympnodes in my thyroid were enlarged. I went for a thyroid ultrasound, and other than the nodes being enlarged, everything looked ok with that. It has to be followed up on at a later date just to be sure. In light of the PET scan and CT scan, the lung oncologist had a conference with several other oncologist and the lung surgeon and they felt that melanoma had spread to the lung and rather than biopsy, in effort to save me from having to go through a second surgery a week following a biopsy, to just remove the node and the lung tissue around it... so most of or all of my Rt Hilar lobe.  At first I said ok... but I was reluctant. I am a nurse and by now I had done the research. If melanoma was in my lung, I had mabey a year to live. I called the radiologist, I wanted to see the PET scan reports for myself. She reviewed it with me and asked me if I had a cold, I said yes I was just starting to get a cold when the PET scan was done and had it still when I had the CT scan done. It was a very bad cold. She told me that could result in a false postivie scan. I told the oncologist that, but he said they all considered that and all agreed that this is typical of what melanoma spread to the lung looks like.  I put myself on antibiodics (fish mox!) I took mega-doses of it for weeks and refused to get surgery without a second PET scan being done first. Surgery was scheduled for June 24th.  Well, because I was such a but head that wouldn't give in, I had a second PET scan on June 19th. On June 22nd the lung surgeon called me and told me I didn't need to come to my surgery, because my PET scan no longer glowed and the lymph node had decreased slightly in size!  Still enlarged, as it takes 6 - 8 weeks for a lymphnode to shrink back to normal after an infection, but it was smaller than it had been and all of the scattered nodules in my lungs were totally gone! So... that put my diagnosis to a stage IIC and currently NED (No evidence of disease). I have a 50/50 chance that there are little microscopic melanoma cells in me that came loose from the surgery or were someplace in the lypmh fluid between my arm and my lymph nodes,  that could spread.  I have to go to the oncologist a couple times a year for scans and blood work and I go to the dermatologist a few times a year to get all of my other moles checked out.  I have to stay out of the sun, wear long sleeves, hat, SPF 70, and live with the little fear in the back of my head that tells me to appreciate and make the best of every day, because my time could be ticking.  I have found out this is pretty typical of cancer survivors...you always have a little fear that it's going to come back to get you. 

I now enjoy life more and try to get the most out of every day. While future planning is essential, I live alot more the moment now and not so much for the future. The theory of Interferon is to boost the immune system so it will be strong and suppress the cancer cells... so I am taking anti-oxidants and immune boosting herbs.  Every day I take:

4000U Vit D (My D level is monitored by my MD)

2100 mg Echinacea

25,000 I U  Beta Carotene

400 mcg Folic Acid

100mg B6

200 mcg Selenium

50 mg zinc

600 mg green tea extract

250 mcg B 12

1200 mg fish oil

500 mg Vit C w/Rose hips

Daily multi vitamin w/iron

Calcium w/D and Boron

-I've been doing this now for a full 6 months and I feel better than I have since I was in my 20's... I have alot more energy, a much happier and stable mood, and my memory seems remarkable!-