Don’s Story: Don’t Be Alone on Your Bladder Cancer Journey

My bladder cancer story began following minor surgery for vein ablation. After that, I was placed on a blood thinner.  Shortly thereafter, I noticed blood in my urine.  I was referred to a urologist who performed a cystoscopy and discovered what turned out to be a high-grade non-invasive carcinoma-in-situ. I have no family history of bladder cancer; however, in 2001, I underwent proton beam radiation therapy for low-grade prostate cancer. My urologist suspects that the radiation contributed to the development of my bladder cancer. 

I underwent two courses of BCG therapy, but the tumors persisted. I was recommended for another cystoscopy and was referred to Dr. Jen-Jane Liu, a urologist at Oregon Health Sciences University.  She recommended that I have a radical cystectomy (removal of my bladder). After studying my options, I decided on an ileal conduit with an external collection bag, as I read that there are fewer complications with this procedure.      

I was scheduled for surgery in early April 2020, but the operation was postponed due to the COVID outbreak.

I was concerned I was at risk for metastasis, so I sought an interim treatment pending surgery.  Dr. Liu recommended intravesical gemcitabine/docetaxel treatment, which has proven effective as an alternative to BCG. After a six-week course of weekly instillations, a follow-up cystoscopy showed the cancer was still present. I finally had robotic bladder and prostate removal surgery on July 1, 2020.   My wife Donna is a retired nurse and she had me walking almost as soon as I woke up from the anesthesia.  After the surgery, I hurt and felt very weak.  It was quite an experience to see a pouch glued to my body attached to a drainage bag.

This would have to become the “new normal” for me.  I found four small puncture wounds and the three-inch incision through which my bladder and prostate were removed. I was surprised at how minimal they were. I hobbled around the ward with a walker multiple times, carrying my drainage bag.  Each time, I returned to my bed, exhausted.

On the second post-operative day, my bowels started working again!  I was told this was due to my frequent walking as well as being in excellent physical shape.  I couldn’t believe I was being discharged that afternoon.   

A few days after returning home, I began daily walking as my doctor had requested.  Over the next several weeks, I walked farther and farther each day, eventually working up to four miles after about eight weeks.

The pain after my surgery gradually abated over the next month and I stopped taking narcotic pain medication after about four days.  I like to be active. I have always been a hiker, and my objective was to be able to backpack again.

In the months following surgery,  I was able to return  to my former exercise routines (with a few modifications), including weights, cross-country skiing, and biking. I have devised a way to backpack with my stoma safely!  There are so many ways to adapt!  Now, I sometimes forget my collection bag is there and have to remind myself to empty it.  A big bonus for me is that I just hook a hose to my bag at night and forget it until morning.  Sleeping through the night is very nice!     

I became acquainted with BCAN through the Inspire website.  I began participating in these discussions and soon came across Alan, who became my “ostomate.”  Alan had the same surgery one week before I did it at the same hospital.  We have been corresponding continuously over the past year.

Alan is the one person who truly understands what I am dealing with.  We share tips and suggestions, which have been invaluable to me.  Alan is a true friend.  If it weren’t for BCAN, we never would have connected.     

BCAN has been my trusted source for information about all aspects of bladder cancer.  I have volunteered for the Survivor to Survivor program and have helped others on their journeys with bladder cancer.  Volunteering truly gives me a sense of purpose and meaning. 

My advice to fellow bladder cancer patients is to reach out and connect with others – don’t be alone on your journey with bladder cancer. BCAN is there to help.  Above all, don’t lose hope.  Treatments and technology have come a long way.   This disease doesn’t have to crimp your style!  With modifications, you can do just about anything you want.    

Before and during  treatment, try to stay in the best physical shape you can.  Keep up with your exercise routines if possible.  If you are recommended for surgery, being in your best physical condition  witll speed your recovery.