Wendy L., Boston
Dx 3/00 Breast Cancer,
Dx 4/00 Melanoma, Dx 2/03 ASC & another Melanoma
March, 2000- Happy 32 birthday to me. My cat died, had a lump in my breast and received the news I had agressive Breast Cancer. Treatments and surgeries, then remission. Started feeling lumps in my other breast and Mammos, Ultrasounds, MRI all showed just glandular tissue every time. My gut told me told me otherwise. Always had watch and wait. Wait, wait, WAIT, WAIT, and more WAITING! Finally, January 2003, same type of deal at first until my surgeon met me in ultrasound and suggested we get a biopsy. I knew they’d find something. Never heard of Angiosarcoma before this and as much as the news devastated me (because I expected Breast Cancer not some rare BEAST!), I still felt validated because all along I was right. My gut (Nag, instincts, hunches) once again came through as much as much as I wished I was wrong.
Back to the drawing board I went. I need to research everything. Knowledge is power! Forgot to mention that I had a Melanoma removed from my leg during the Breast Treatments. Now I had another Melanoma on my back being removed during the AngioSarcoma (AS) treatments. In some ways, I felt like I was in medical school.
Doctors were baffled on why I had AS in the opposite breast. Breast Cancer, Melanomas and Angiosarcoma led them to believe I might have had a rare mutation (P53) and was tested for it. Came back negative thank goodness!
I was sent to see a Breast Oncologist because it was in the breast but my research led me to believe that I needed a Sarcoma expert. I was reassured that my Onc was working directly with the Sarcoma expert. She was pushing for Mastectomy right away and when I inquired about chemo, claimed that I had no measurable disease and that chemo was almost always ineffective. I touched upon my desire to have a second oppinion and she got hissy with me. So of course I got a second opinion. I started at my current hospital (Dana Farber) and went right to the source, George Demetri, Sarcoma God. I picked up all my reports to read over before my appt with him and on my CT reports I noticed that the 3 tumors in the breast had dimensions. How is that not measurable? When I informed him of my conversation with the breast onc and how I asked about chemo and the part about no measurable disease I played dumb to see what he would say. You see, my gut told me chemo! He said to me, “What do you mean no measurable diesease? The reports are showing dimensions and I would recommend a chemo called Doxil before surgery.” So I fired my Breast Oncologist.
Researching the AS was very scary. I was told it would be because Sarcoma is rare, but AS is even more rare on it’s own but especialy in the breast. Mind you, this was 2003. Not so much anymore.
I started the Doxil and we were on the watch and wait once again. After every few rounds I was scanned and was told each time that the chemo was not working. At the same time, it was not growing either, just stable. They would tell me that I should have the surgery or at least think about it very soon. My gut told me, one more round each time. It took several months until I felt it was time. I questioned my instincts each time and thought maybe I was just in denial. I knew I was having the surgery either way but I kept putting it off for another round of Doxil. What I am having trouble with is the fact that I came so close to having bi-lateral mastectomies during the breast cancer days. I needed chemo for sure but deciding to have radiation caused me such grief. My instincts told me no, have mastectomies but I igored them! If I followed my gut, I would have never gotten AS. How the heck was I supposed to know?
Surgery time came and went and now on to the waiting for pathology. Clean margins were what we wanted to hear but we heard something better. Much bettter! Yes margins were clear, and yes the tumors were there, but, they were necrotic (dead!). While the chemo did not shrink the tumors still visable on the scans, it killed them dead! It worked!
Can you guess what the moral of my story is? Come on, guess?