Wednesday Warrior – Roberta

WHY ME? Still Surviving Angiosarcoma!

My story begins with a routine breast exam in 1997. I was devastated to hear that I had breast cancer. After a biopsy that was sent to the University of Virginia, and about four weeks of anxiety, I was told I had a less than 1 inch centimeter carcinoma in situ. Then I was told a lumpectomy with radiation was the best course of action. I had asked for a mastectomy but was told it was unnecessary. This is a lesson in not always taking the doctor’s treatment plan as the best option. I was completely against having any radiation because of a previous cancer of the uterus. I had been to one doctor and was not satisfied with his diagnosis.  He wanted to treat me with radiation. My new doctors explained to me that removal of the cancer was the gold standard so this is what I did. It pays to get another diagnosis.

For seven years all scans were okay.  I woke up one morning with two tiny black spots that itched very badly at the top of my right breast. I thought I had been bitten by a spider or an insect of some kind. I went to my primary doctor and she treated me with Bactrim, cortisone cream and then later antibiotics. This went on for about six months and the two spots kept getting bigger and looked as if my flesh was rotting.  From time to time they would bleed. There were visible blood vessels you could see that looked as if they were ruptured and bleeding inside the tissue. My primary doctor did not have a clue as to what it was. I decided to see my surgeon that did the lumpectomy and he did another biopsy. It came back as angiosarcoma. I decided to find another surgeon at this time for another opinion. The next week I had a mastectomy.

This good luck lasted for five years. In the fifth year I had two angiosarcomas removed and the other in January. The last one the doctor was unable to get clean margins. All this time I was seeing an oncologist that was ordering my scans so the surgeon and oncologist conferred and decided I didn’t have any options left. They gave me a year to live and offered me no hope.

My next stop was the Moffitt Cancer Center in Tampa to see a sarcoma specialist. They had a completely different prognosis. I did six months of chemo and they did a chest wall reconstruction, and removed my pectoral muscle replaced it with a muscle from my back.  After it had healed, I was put on the chemo pill Votrient and have had clean scans for two years and five months. I am in my third year taking Votrient. I thank God and the doctors at Moffitt every day that I am still alive.

I have learned a lot in the last 15 years of my battle with cancer. There is always hope. Don’t give up and always get a second opinion.

If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!