Stable after participating in a clinical trial

Fran – I am currently a doctoral student working on my dissertation: Women with metastatic breast cancer and their perceptions of their journeys. I am also a single mom with a 15-year old son who started high school this year.

My first diagnosis was in January 2007 with IIIb breast cancer. I was HER2+, ER-, PR- with 8 out of 9 lymph nodes positive. My son was 7 years old and in first grade. I had a lumpectomy, a mastectomy, and 8 rounds of chemo along with 5 . weeks of treatment. The first time I was diagnosed, I did not feel like the breast cancer was going to kill me. I pretty much sailed through treatment (as much as one can!) and I was going along thinking everything was fine.

Then in February 2011, I was diagnosed with metastatic breast cancer, with liver and bone mets. This time I was HER2+,ER+,PR-. I found being diagnosed a second time around a lot more difficult. As soon as my oncologist gave me the diagnosis, I knew it was bad. It was as if my life lost its color. With early stage breast cancer, I was out and about; now I had anxiety about leaving my house.

Very early on, probably my second visit, my doctor told me there was a phase III clinical trial he thought I would be perfect for. When he asked me if I had any interest in participating, I said OK without hesitation! I have a great medical team and I trust my oncologist. I really saw it as an opportunity for me to live. As part of the trial I was assigned a study nurse. She became my liaison and she treated me like a VIP. She made all of my appointments, and made sure I knew when they were all going to be. She checked up on me and made sure I had my medication. If I needed anything I called her. It was so nice to have that extra assistance, and to have a person alongside me while I went through the treatment. It’s almost as if I had a partner – I did not have to go through this alone.

I was in the trial for at least a year and a half. The treatment was a pill; there was no travelling and I could be in the clinical trial in my hometown. The medical team really takes care of you. I had an echocardiogram every 2 months to check that my heart was functioning OK. I also had a CAT scan every 2 months. It was a really positive experience to be assured every 2 months that everything was shrinking and everything was stable. At the end of the trial period, the lesions were completely gone from my chest; one of the lesions on my liver was also completely gone, and the other had shrunk by 70%.

One of the things I found out from being in the trial is that the treatment affects everyone differently and it is important to understand that not everyone is going to have the same side effects. It is important to weigh up the pros and cons, but I think
it is always worth giving a clinical trial a shot. There is nothing to lose. When my doctor thanked me for being in the trial and helping patients in the future, it felt pretty good! I am pretty sure being in this trial saved my life. I have been stable since August of 2011.