Lynn Zito shared her reflections on her husband Jim’s experience with bladder cancer.
I don’t think people take bladder cancer seriously enough. Many think bladder cancer is just a disease of older people. They can have their bladder removed, and they will have a diversion and then be just fine after that. That’s not always true. Jim’s mother was diagnosed with bladder cancer in 2002. She had her bladder out; she has a urostomy bag. Now she’s 95 years-old and still living.
She never had chemo. She never had anything. She survived. I think a lot of our friends and relatives just thought it was going to be the same for Jim. That’s just not the case with bladder cancer. It’s a sneaky, devious, evil disease. More research funding and education are desperately needed to beat it. It does not attract the attention and research dollars that other cancers do.
My husband was a tremendous person, with a full, rich life and so much to live for and look forward to. A cure has to be found for this monstrous disease so that other patients and their wives, husbands, parents, sons, daughters, family members and friends don’t suffer the same devastating fate and loss as myself, my family and Jim’s innumerable friends and colleagues did.
In October 2014, Jim had a TURBT. They determined that he did have muscle invasive bladder cancer, and the urologist immediately referred us to the Harold C. Simmons Comprehensive Cancer Center, an NCI-designated comprehensive cancer center at University of Texas Southwestern. The oncologist at UT Southwest presented us with options for treatment, which were few and pretty straightforward.
Jim needed to start chemo as soon as possible, and follow up with a radical cystectomy. We didn’t hesitate and were very aggressive in how we approached his treatment. We pushed to get everything started as soon as possible. After his cystectomy and neobladder, early in 2015, we learned that his cancer had spread. He began chemotherapy and soon had no evidence of disease until ‘something’ showed up at the end of November 2015. Jim had started a course of radiation treatments because his cancer had metastasized into his lower spine and he was experiencing a tremendous amount of back pain.
Having spent 20 years as a pharmaceutical rep, I was very familiar with clinical trials and their opportunity to access promising new therapies that aren’t yet available to the general public. We looked into different trials using resources available on the BCAN website, as well as on www.clinicaltrials.gov. Jim’s oncologist in Texas had contacted Dr. Andrea Apolo, at the National Cancer Institute, and arranged for us to meet with her at the National Institute of Health in Bethesda, MD, to screen him for acceptance into an immunotherapy clinical. They accepted Jim into the trial, and we began to travel to the NIH every three weeks for treatment. (Read what Dr. Apolo shared about Jim and other patients that do not survive.)
Although we were seeing some positive response during the clinical trial, time ran out and this horrific disease ultimately overwhelmed. After a valiant 21 month battle with bladder cancer, Jim passed away on July 13, 2016. He will be deeply and forever loved and missed by myself, his family, friends, colleagues and his devoted 4-legged fur family.
I believe that every patient should have an advocate with them at all appointments, not just for support, but to be their eyes and ears as well. There is an immense amount of information to process and critical decisions to be made. Things can move very quickly and having an advocate along during appointments for support, and to help clarify, is vital. Jim and I committed to going through his treatment together, as a team. I was with him during every appointment and procedure throughout the course of his therapy. I realize that I was fortunate, and not everyone can do that, but I would urge anyone going through cancer to find a surrogate advocate for times when the spouse or partner is not able to go with the patient.
I also believe that there needs to be a team approach when treating cancer. No matter how brilliant the primary oncologist is, there are times during treatment where additional specialists might be of great benefit to the patient. One important area for some patients is pain management. I would strongly suggest bringing a Pain and Palliative Care Team on board as early in treatment as possible. They are the specialists best equipped to deal with the often excruciating pain and other symptoms associated with cancer and its treatment. Jim and I were fortunate to have had a great P&PC team at UT Southwest. I only wish that we had found them earlier in his diagnosis and treatment.
Finally, never give up hope and be proactive about treatment. Keep moving forward. Don’t stop. Always think ahead to what your next option might be. Do a lot of research and seek out promising new courses of therapy. Look into clinical trials. There is so much happening today in cancer research. BCAN is a tremendous resource for information and support. My husband and I both benefited immensely from the BCAN website, and I still do. We spent a lot of time on the site researching and reading about other people’s experiences and trials.