My story begins in September 2003. I had a freckled spot on the inner corner of my eye. I had always thought it was just a freckle. One day I noticed a growth on the surface of my eye, it was flesh colored. My opthalmologist was not worried. He thought it was a pterygium, which is a benign growth, and he said those are usually 99.1% benign. I was scheduled for surgery right away.
Well, guess what? The doctor called me two days after the operation and said that the initial pathology report showed that it was malignant melanoma. He then referred me to an Ocular Oncologist in San Francisco. Thus began my journey of surgeries (over 12 at least), proton beam radiation and chemotherapy eye drops, Mitomycin and 5-FU. This was my course for the next three years.
In November 2006, I noticed a swollen lymph gland under my jawline. I was hoping that I was just coming down with a bug. I was put on antibiotics and after two weeks it was still there, same size. I had a fine needle biopsy and it was positive for melanoma. Great, now it has spread. I was scheduled for a radical neck dissection. The surgeon removed several nodes and almost half were positive. What I didn't know at the time was that on my chest xray I had for the pre-op, there was a spot on my lung. My surgeon informed me of the news when I went to my post operative appointment.
Now that I was thrust to stage IV status, my case was put before a tumor board. The lead doctor came in to the exam room and said with stage IV melanoma I had six to nine months to live if I did not choose a radical treatment. It was Biochemotherapy. That was the ONLY treatment offered to me. I was scared to my very core. I saw my life flash before my eyes, I still had a 14 and 19 year old to raise.
By now I had an oncologist that set me up for Biochemo. I started the treatment one week before Christmas of 2006. Due to the toxicity of the treatment, it is only done in a hospital inpatient setting.
Every month for 18 months I packed my bag and headed off to California Pacific Medical Center in San Francisco.. The first six cycles consisted of Biochemotherapy with Interleukin 2. The remaining twelve cycles were IL-2 only. I felt all the side effects my doctor said I would get, no matter if it was the first six months or the last twelve, it didn't matter, it was just extremely brutal.
During the time of my treatment, my mother was dying from cancer just as I was fighting cancer. Unfortunately she passed away three months before I completed my treatment.
I have been cancer free since November 2006 (my oncologist explained to me that you count the time when you first start treatment rather than the the finishing date. Something I hadn't known!). I still continued to get the pigmented spots on the surface of my eye once I finished up with treatment. Then began the same cycle of eye surgery after eye surgery about every four months.
My oncologist suggested that I have my eye removed because now, not only was I getting the pigments ON my eye, but I was getting some on my eyelid and underneath my eye.
In the beginning of October 2011, I flew to Philadelphia and saw my doctors from the Wills Eye Hospital. I had gone to seek a second opinion and really liked their team. My primary Ocular Oncologist agreed with my oncologist from home that that would be a wise thing to do.
On October 14th, I underwent an exenteration, where they not only take out the eye but remove the surrounding lid and tissues as well. To me it would be far scarier not knowing at what point melanoma goes systemic. I did not want to take that chance to have that happen like it did in 2006.
I had surgery at Jefferson University Hospital in Philadelphia and had a whole team of head and neck doctors along with my ocular doctor performing the surgery. My surgery was ten hours long. They grafted a piece of tissue from my thigh and used that to cover the eye cavity. My thigh was in more pain than my eye area!
In a few months time, when I am healing, I will meet with an Anaplastologist who will construct a prosthetic eye "mask" made up with an artificial eye with the surrounding skin. It looks totally life like. I can attach this to my face with adhesive.
I have always been an optimistic person and now I feel like I have a whole new lease on life. I am hopeful that I will be here for a long time and that I will live to see a cure for melanoma!
Suzanne Lescure, California, 11/28/11