Susan’s Story
Think Tank 2011

Susan was diagnosed with Stage 3 bladder cancer in early 2010.  She participated in a clinical trial in which she received chemotherapy and her bladder was removed.  She is now in remission.  At the 2011 Think Tank, Susan described her experiences in a clinical trial.

“You are doing remarkably well, but we just don’t know why,” said Dr. Jonathan Rosenberg at a follow up appointment after chemotherapy and surgery to remove my bladder. I was participating in a clinical trial for bladder cancer at Dana Farber in Boston just one year ago.

I was quick to respond that I knew exactly why I was in the healing process and disease free at this time. I recounted in detail the support and prayers I was receiving from family, friends, ministry colleagues and folks I didn’t even know firsthand since I received the diagnosis that I had stage 3 bladder cancer.

James, my 6 year old grandson, was especially key to keeping my spirits positive and focused on getting well. One day, he asked if he could try on my wig. I assured him that it would be fine. Placing my short cropped wig on his head, he said, “Hi. My name is Sue, and I have cancer but I am going to be OK”.

I want to share with you my treatment experiences, as a person of faith who was part of a clinical trial at Dana Farber for bladder cancer, who tries to live my faith. These valued spiritual practices did make a difference in my healing process. You can’t quantify them, and you can’t prescribe them, but you can live them as a guide for wholeness in the midst of disease.

When my family met with Dr. Rosenberg and his team to learn about the clinical trial, he shared with me what being part of a trial would include. What made it possible for me to say yes was education, education, education.

• Education included what I was dealing with through this diagnosis, what I could expect in treatment and what the honest possibilities of recovery were.
• I received pages and pages of potential side effects if I were to be part of the study (I do want to say how overwhelmed I was at one point with all the possibilities but my youngest son was quite clear that you can’t be constipated and have diarrhea all at the same time!)
• I knew that there would be a team of nurses who would be “my people” and would check in with me on a regular basis and would respond to every question and concern that I had
• I could call day or night and Dr. Rosenberg would return my call within 10 minutes. I didn’t believe that piece at first, but it was true. When I called him early on in the trial he did in fact return my call in less than 10 minutes!

Medical presence, support, trust and excellent communication between physician and patient is key to participation in a clinical trial. And so, my family and I agreed that I would participate in the clinical trial and that this treatment plan would be the foundation for my care in the months ahead.

The chemotherapy cocktails were important. The drugs that eliminated the expected nausea and side effects of treatment, and the support from Dr. Rosenberg’s team were essential.

But most of all, having the partnership of a surgeon and oncologist working together on my treatment was reassuring and obviously successful. As I kept appointments between these two physicians, they communicated and shared test results as I headed toward surgery. They were on the same page, had talked with one another as they prepared for my visits, had shared progress reports and filled me with the confidence that everything that could be done was being done for my benefit and wholeness.

My role in this process was to be the best patient that they ever worked with. I did everything thing they asked and more. I kept every appointment. I ate a balanced diet when food tasted like cardboard; I meditated several times a day to stay focused and centered in my personal life so that I could live as stress free as possible.

I am now an advocate for clinical trials. When colleagues or friends are diagnosed with cancer one of my first responses is, “Are you part of a clinical trial”? Yes, there are risks. But living has risk factors as well. It may not have the outcome that patients would hope for, but as more and more of cancer patients participate in clinical trials, the percentage becoming disease free is strengthened and provides better outcomes.