Susan’s Immunotherapy Story

“In December of 2004 I had serious bleeding and we went right to the emergency room.  I had a cystoscopy immediately, and received a diagnosis of bladder cancer. The doctor who made the diagnosis felt it was serious enough that I needed the level of care that a major medical center could provide. In February 2005, I had a 15 hour surgery. They removed my bladder, uterus, ovaries, and appendix – anything that possibly could have been affected. We decided to go with the Indiana pouch for my diversion.

For eight years I was cancer free and lived life normally.  While I was going through all of this I became involved in the pastime activity of dragon boating, a large boat with a group of about 20 rowers. I was in competitions all over the country!  Not only did it help me keep my physical strength up but the support of my team helped me tremendously.

Then in early 2013, the bleeding that first alerted me to a problem, resumed. The doctor saw an enlarged lymph node in my abdomen.  I was sent for a needle biopsy and that confirmed I had metastatic urothelial cancer. My bladder cancer had returned.

I had earlier been told that metastatic cancer wasn’t curable but could be controlled.  Diagnostic scans showed I had a few other spots of cancer — one was close to a lung.  I was referred to another cancer specialist and was given chemotherapy. I did pretty well as far as side effects during chemotherapy. However, toward the end of this treatment my blood counts started dropping.

My doctor approached me about joining a clinical trial. My doctor was excited about this trial because it was testing the only drug to have shown real promise in acting against urothelial cancer. I decided to go with the trial because it was a single arm trial. I knew I would be getting the experimental drug known as atezolizumab. My other options for treatment were becoming limited. There’s a lot of testing, screening and inclusion criteria to be met before you are accepted into a clinical trial. My doctor explained that the drug being tested had a different mechanism – that it works with the immune system to keep them from cancer cells from replicating.  As of today I have had a complete response – no signs of the metastatic cancer.

This is an ongoing clinical trial. I receive the drug once every three weeks – the treatment schedule and procedure isn’t that much different than chemotherapy treatment.  But the follow up is very detailed – they always check in to see if I am experiencing side effects. The level of care in a clinical trial is ongoing.

I joined this trial because I felt it would give me a chance at living a longer life. But I also feel that clinical trials are an important way to find out if new drugs work as intended and thus be approved for use, as was the case with the drug I received. Until now, there hasn’t been something that is truly effective for metastatic bladder cancer.”