Donna Potter, Stage III
Updated information as of 1/06/2016
I shared my story last year when I was diagnosed with a second melanoma 39 years after the first one. At the time I was staged as stage IIb but in 1976 was stage III. I had surgery in August and had clean scans prior to that so we once again adopted watch and wait. The wide excision showed they got everything. On January 6th of this year I felt a small bump near the incision. I looked and it was a little black spot. I called Dana-Farber and they took me right away and did a biopsy that day. It came back as melanoma and upped me to Stage IIIC as they felt it was either a local recurrence or an in-transit metastasis. I was already booked for a PET scan at the end of the month. It came back clean, along with my blood work.
I underwent a modified wide excision on Feb 25th at the Brigham. That showed some abnormal pigmented cells but no malignancy. My most recent scan was okay as well as my labs. I will be doing every scans three months (much to the chagrin of my insurance company) until I’ve been clear for a year, then we can back off a bit.
I turn 65 in a few weeks so have decided to retire since the prognosis for IIIc is not that good. I am eligible for Yervoy but we are holding off for now since everything is clear. One thing they are learning about the newer drugs is some tumors develop resistance quickly so we are waiting. I have to tell you though that I am thoroughly angry that any drug would cost more than $30,000 a dose! Although Medicare will cover some of it and my supplemental insurance will pick up part of the cost, it is still going to cost a lot of money if I need to go on that. It’s outrageous that a drug company thinks it is okay to price the drug that high. I know drugs take years to develop and that the process of going through Phase I, II, and III trials is time-consuming and costly, but this is ridiculous. The longer I can avoid this drug or similar ones, the better. I know some people have had spectacular results with Yervoy but I am hoping that by holding out, maybe the price will drop for one reason or another. Being in healthcare (I am an RN) it infuriates me that drug companies can price-gouge but hospitals and doctors have to fight for every dime. A free market system fails when you control prices in one part of the market and allow others to skyrocket. It’s not sustainable. I’ll get off my soapbox but believe me, I am not going down easy with this fight. If they want me to take Yervoy then I want the CEO of BMS to personally justify the cost and explain how this is fair when he lives in the lap of luxury and cancer patients have to struggle with decisions of whether to eat or pay for medications. Cancer takes enough away. It should not rob you of every dime so some CEO can make millions!
In 1976 I was diagnosed with melanoma. I can remember how scared I was. I did not know a lot about it, although I am a nurse. It was not a common cancer in 1976 at all, but was known to be deadly. It was on the back of my left thigh. I underwent wide excision with incontinuity node dissection. Initially I was told the nodes were clear but on the day of my discharge from the hospital I was told one had come back as positive. I developed lymphedema in that leg in less than two weeks. My surgeon told me to buy some support panty hose. That’s about all they could do then. I was seen at the Dana Farber Cancer Institute in Boston for consultation and they recommended a watch and wait approach which is what we did until this year. I had a pre-existing mole that had felt bigger but I could not see it. I saw some drainage from the area and finally looked in a mirror. I was astounded and scared to see that I now had a large black mole arising from a previously innocuous looking little flesh colored mole. I saw my PCP and he sent me to a surgeon to have it removed. It was very near my original site. I had it removed about 10 days ago. Quite honestly, after 39 years of survivorship I had gotten a bit lax about follow up, although once I healed from my initial surgery and saw my surgeon once a month for six months, they decided I no longer needed regular care. I had shown this little mole to my surgeon and also to a highly respected dermatologist and they felt it was nothing. Well, now it is something. My surgeon (not the same one as in 1976 – that one has since died) called to tell me that the pathologist had called to give him a heads up that the lesion was a melanoma. Last week I saw the surgeon and he read me the path report. I had two melanomas – one in situ and one that was a Clark’s Level IV (same as my melanoma in 1976) and had a Breslow depth of 4.0 mm plus it was ulcerated. They did not do Breslow depth in 1976. I am now waiting for Blue Cross to approve imaging studies to see if there’s been any distant metastasis. The Tumor Board meets next week so hopefully I will be resulted by then.
I do not want to scare anyone, but if you have ever had melanoma do not skip your regular checks, look at anything that feels different, and stay on top of what your body is doing. I had swelling in the area but attributed it to my lymphedema, not to the mole. It’s probably some of both but I did have treatment for the lymphedema 4 years ago that was fairly successful. I know melanoma can re-occur many years down the road but quite honestly I thought by 39 years I was in the clear. Hopefully my scans will be okay but I am once again scared and living in that limbo of not knowing what is going to happen next. I think that is one of the hardest things about dealing with cancer – the uncertainty. I have told some close friends and some co-workers as well as my boss but I have not told my brother. He’s my only sibling and our parents are both deceased. I am divorced with no kids. My brother works hard and is going on vacation in a few weeks and I will tell him after that, but it is what I am dreading most. If you have had melanoma at any stage, please keep up with your follow ups and don’t let your guard down. It was just weeks ago I told someone I was a 39-year survivor but that’s done. Time to deal with it again…