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.

Nikos327 - (11/9/2014 - 9:41am)

My experience has been VERY similar to yours, although shorter duration. I think I'll make a posting to describe how this is dealt with under the United Kingdom's National Health Service (similar to your president's "Obama Care" proposal).

In brief: Following an excision biopsy of a suspicious mole, I was diagnosed with primary melanoma with a Breslow depth of 2.37mm and very high Mitotic Rate back in Sep 2013. The Consultant told me that the biopsy had a clear margin, so the "ticking time-bomb" had been removed, so the follow up wide excision was a precautionary procedure. He went on to say that although it was believed that the cancer had been removed, he could not be certain that the "ticking time-bomb" hadn't silently exploded before its removal.

In November 2013, I went into hospital for the wide excision, under general anaesthetic. I stayed in overnight and went home the following day. Pathology results from this showed no further melanoma, so all looking good at that stage.

In July this year, I found a lump in my arm pit, which turned out to be metastatic melanoma in my lymph nodes. I underwent a Lymph Node Dissection in late August, removing 28 lymph nodes (two of which had Melanoma in) and my Pectorus Minor muscle (which the melanoma must have transited to reach the lymph system).

My follow up consultation with the Oncologist in Bristol University Hospital gave me the results. This time the pathology showed that the melanoma had 'just' breached the lymph node walls, but the immediate surrounding tissue had been removed in the operation. I have Stage 3C Melanoma and was told that Chemotherapy was ineffective but was offered radiotherapy to the area affected. However, after discussing this for an hour with the Oncologist and giving it some thought, sleeping on it etc. I chose not to take up the radiotherapy.

So, I'll be receiving CT Scans every 6 months for several years to come (God Willing :-)) ... and a physical check over every 3 months.

I'm very happy with the treatment I've received from the NHS and really respect the honesty of the medical people. It can't have been easy for them to tell me, when I asked for the survival statistics, that I only have a 40% chance of being here in 5 years time and a 24% chance of being alive in 10 years time.

It took me a few weeks feeling sorry for myself  to get used to the new situation, but I'm back to my usual self now. I'm lucky enough to have very supportive family. We're pretty widespread throughout the UK, but my elder brother flew down from the North of Scotland to see me last week and my other borther, who lives a couple of hours drive away has been visiting frequently. Skype is great too. We have conference calls all the time.

One more thing I've found to cheer you up is: when you say "Could I have a second slice of that lovely cake please?" and your wife says "A second slice? Think of your waist line", I can counter with "I've got Cancer you know ..." at which point she, and everyone else, agrees that you should have that second slice :-)