Virginia J. "Jeannie" Radley

Stage IIIc, 10 Year Survivor, no recurrences!

Tonight, for some odd reason, I went to the MD Anderson site and pulled up my original path report. In June of 2003, I saw doctors at MD Anderson after my family doctor did a wide excision at the site of a mole removal 2 days earlier. His PA, a very astute young woman had removed the mole. I was told I'd have results in 5 days, but on that day, when she saw the angry looking mole on my upper left back, I just KNEW it was melanoma. I'd checked the internet, knew that an itchy mole was indicative of melanoma, knew it looked ugly and was red, but still, only one day after the mole had been removed and sent for pathology examination, I got an ugent call. ":You have melanoma. You HAVE to come in immediately."

The doctor, a nice man that I trusted, did a wide excision and told me "We got it all. There are nice wide margins and it shoud all be gone now" and sent me on my way. I called back and asked for a referral to an Oncologist, but had to find one on my own. The doctor was on vacation and the nurses wanted to wait until he came back. I found one myself. I'd done some research on MPIP (yup, first used this magnificent site 10 and a half years ago) and found that with my Breslow depth, 2.34 and Clarks Level 4, there was a necessity for follow up and I should NOT have had a wide excision before I had a Sentinel Lympn Node biopsy.

I had no insurance and certainly no money, but thank God I qualified for free treatment at MD Anderson and I got in to see Dr. Jeffrey Gershenwald. I asked Dr. Gershenwald what the likeli-hood of the melanoma having spread was and he thought it was pretty low. We had a conversation 7 years later about that initial opionion. He told me then that he was so glad that he'd decided to do a SLNB. It worked (the path for lymph flow had not been affected by the previous Wide excision) and I actually had TWO sentinal nodes filled with melanoma, plus one more. Then they did another wide excision and an elective lymph node dissection, where two more nodes with micromets were found. Dr. Gershenwald said to me at that 7 year mark that had we not done the SLNB and ELND, I would no longer be here. I would have died, as it was already spreading!

I have had three medical oncologists at MD Anderson and loved two of them. The one I've had the longest, Dr. Papadopolous, is chief of the Melanoma Department and a caring, brilliant Oncologist and man. There have been many scares and lots of concerns as I also have lupus, which can and often does mimic cancer spread. Dr. Papa watches me like a hawk, or at least he did until I moved to Michigan three months ago. The care here is nothing at at like MD Anderson. They DO not follow MDA protocol and because I am 10 years out now. they don't generally do scans (MRI of brain or CT of chest and abdomen) but do bloodwork and a chest film, regular. I have yet to see an Oncologist and am overdue, but my new Internal Medicine Doctor acted scornful at the thought that the doctors would order these tests. He claimed that they would not be paid for my insurance (I am on Medicare and a secondary) but I assured him that MDA had always gotten the tests covered and any doctor here would be able to, also.

I am writing my story to let you know that you should ALWAYS fight for your health!. Do not listen to naysayers, doctors that do not offer you the opportunity to have an Oncologist follow your situation, or people that say that melanoma is ONLY SKIN CANCER. It's a deadly cancer and it takes a whole lot of good people. You need to be vigilant and follow your gut feelings. I plan to fight for good care here in MI or I will save up for a once per year trip to MD Anderson in Houston. I deserve the best care and so do you.

 

Sun, 2014-01-26

Comments

oldblue - (7/21/2014 - 2:24pm)

 

Good for you Virginia. Thank you for sharing your story. It has given me some hope.

Regards,

Nigel.

Resilient4Life - (8/30/2014 - 12:18pm)

Jeannie,

I've been on a crash course to educate myself about melanoma since my diagnosis 12 days ago. No one is holding my hand or pointing out the right direction, so I've put on several "hats"; the advocacy one, the research one, the squeaky wheel one. I am appalled by the things I read on the forum, and also by my own experience. Setting that aside, learning about  your experience helps me to come to grips which some fundamentals. I had no clue about Sentinal Node Biopsy, and when someone mentioned having it done BEFORE the WLE, I just gulped and put it out of my mind. I will be meeting my surgeon in a couple weeks, and now know a little more about what to ask. 

Your reality of finding your own oncologist is probably going to be mine as well. It actually helps to know that because now I can gear up for it. I too have limited money and am currently getting care at a local hospital at no charge. For that, I am totally grateful.

It helps to know also that after a certain period of time that the medical community may not be so willing to follow up on scans etc. But how many times have I read, over and over again, that after the first removal of the melanoma, years passed with absolutely no symptoms Then something "random" happened and oops, you're now stage IV!

My favorite quote is from Amelia Earheart: "The most difficult thing is the decision to act, the rest is merely tenacity."

Keep up the good fight & thanks for telling your story here.