MINNEAPOLIS -- My name is Joan McGailey Serena. I am 58 and I have Stage IV malignant metastasized melanoma. I would like to share my story so that others become more aware and don't make the same mistakes. What has happened to me can be prevented. It is also appropriate to share now as May is Melanoma month. I would like to think if I could help one person my story will have been worth telling.
In 1998 there was a mole on my shoulder that became aggravated. It was red; it would itch, ooze, scab, and be fine. I didn't realize it could be problematic. Finally I went to a dermatologist. The biopsy revealed it was melanoma.
Outpatient surgery was scheduled, the mole removed w/proper margins and life continued. For 11 years I religiously went to my dermatologist every 3 months for two years and then every six months until I got the biggest surprise of my life. July 2009 I was in NY on a business trip, not feeling very well popping Tylenol to get me through the week and a major presentation. Following the presentation I experienced some sort of seizure. My head and hand started to shake. This lasted about a minute. I was meant to fly home that night but thought better of it.
What if this happened on the airplane? Would they stop for me - I don't think so. In fact, a big part of why I did not get on the plane I attribute to Farah Fawcetts story. There was a part of her story where she had surgery in Germany and wanted to go home following the surgery. The doctors advised against it because the altitude would negatively affect her. She went anyway and ended up in excruciating pain. So I decided against getting on an airplane and opted for the emergency room at LICH in Brooklyn. I rolled my suitcase in with me and was immediately checked in after describing my symptoms. First stop CAT scan where it was revealed I had a melanoma on my brain the size of a plum. The hospital wanted to keep me overnight for additional tests. The results were quite surprising. I had a mass on my kidney and also my lung. I thought when I checked in they might tell me I had high blood pressure and give me a few pills and send me home. Not So. My husband flew in from Minneapolis the next day to take me home and within 2 days we were at the Mayo.
The following week I was in surgery, right kidney out on Tuesday. That one was renal cell cancer. Brain tumor (a melanoma) removed on Thurs. Home on Sun. They saved the best for last - the lung. This followed several weeks later allowing for some recovery time from the other 2 surgeries. What followed was 2 weeks of whole brain radiation, oral chemo, and several months of rest. In subsequent mo's I had other outpatient surgeries and tried the drug Leukine designed to increase white blood cell count & attack melanoma.
Then there have been 2 Gamma Knife surgeries - some form of medieval torture where they screw and bolt an apparatus to your skull and radiate the lesions.
A fabulous website was set up by church friends to keep family and friends up to date, but there was a recurring theme - not only from those emailing, but visiting friends...
"I thought melanoma was only a skin problem"
Over and over I would hear this response and thought people need to know that this is not true. If moles go unchecked the melanoma can spread and become worse. - spreading to lymph nodes and other organs.
My situation is rare, but not uncommon - but it is surely unnecessary for moles to develop to this degree.
Most recently I have had my gall bladder removed. I am fortunate now to be part of a trial for a drug that was recently approved by the FDA. Ipilimumab - the first drug recognized to be effective for melanoma.
So what could I have done differently in my life to change this situation?
First, I should have stayed out of the sun when I was young. But this is what we did - baby oil, iodine and reflectors. I got burned too many times. The results lay dormant in your system for years then reappear.
Secondly, I should have attended to the mole on my shoulder much earlier. If you suspect a bad mole go directly to a dermatologist. Many GP's don't recognize the signs of (mine didn't) I pursued moles. The derm even thought my GP didn't think the mole was anything and I was too young to have skin cancer. I was. But even the 6 mo. checkups were not enough. I had many suspect moles removed in those years but no other precautionary treatments were suggested. I could have prevented this situation. I want others to know they can to. Pet scans might have helped but were not ever mentioned. And it never occurred to me that this was an option since I was under the impression that since the margins were clean in my shoulder surgery I was in the clear.
The Skin Cancer Foundation is a great source for more information. Here are some key facts from their website, or log on to www.skincancer.org/melanoma.
1. Melanoma is a malignant tumor that originates in melanocytes, the cells that produce the pigment that colors our skin, hair and eyes.
2. Melanoma is the most dangerous form of skin cancer. If recognized early it is nearly always curable. If not it can advance to other parts of the body where it is more challenging to treat and can be fatal.
3. Recognize the signs and act quickly. Everyone is at risk - some more than others. If family members have moles you are at a 50% greater chance of developing the disease.
4. I like the Skin Cancer Foundations ABCDE's for mole identification:
A - asymmetry
B - border
C - color
D - Diameter
E - Evolving
5. Early detection remains the best weapon in fighting skin cancer.
Be aware and know that melanoma is not just skin deep.
Check the Skin Cancer Foundations website for further information or email me at mymelanomastory@gmail.com with your story.
(Copyright 2011 by KARE. All Rights Reserved.)