Bladder cancer can be a sneaky disease. Sometimes you have very few symptoms until things hit a critical mass. For me, that happened in the form of a suspected urinary tract infection (UTI). I’ve had UTI’s my whole adult life, so the latest one in summer of 2012 didn’t seem unusual. I went to my OB/GYN to get checked out and hoped to get a prescription to take care of it. After finishing the antibiotics, I went back for an all-clear test, something that I didn’t always take time for, following an infection. That test may have saved my life.
The doctor concluded that this was not a simple UTI, as there was still microscopic blood in my urine. She sent me next door to the urologist, who confirmed the likelihood of bladder cancer. He did an initial TURBT, diagnosed CIS and two discrete tumors, and set up BCG therapy for the next three months. Whenever I have serious health concerns, I make it a point to seek out two separate diagnose, so I contacted University of Michigan’s cancer institute to pursue a second opinion.
The urological oncologist I contacted is one of the nation’s best, and after a second TURBT done at University of Michigan, she confirmed that my cancer was a very aggressive Nested Variant, stage 2, and that it would likely not be responsive to intravesical (BCG) treatment. She recommended a radical cystectomy. This was early September, and this was done in early October.
I decided on a neobladder as my replacement/diversion technique. I am younger than many bladder cancer patients (58 at the time) and live a very physical life, so it seemed the best option. During the cystectomy, my doctor fashioned my neo from the last 20 inches of my ileum (upper intestine). The surgery went well, but for the next year, I had one UTI per month as I worked hard to live with the neobladder. UTI’s following a radical cystectomy are a serious matter, as they usually result in high fever and must be treated aggressively.
Unfortunately, I am one of the unlucky ones who became hyper-continent following the surgery (I could not release urine through the normal urinary sphincter, and therefore always had to use a catheter whenever voiding, including twice during the night). In addition, my neobladder would only retain 200 cc’s of urine (not much) before refluxing it back to the kidneys.
This combination of factors caused the recurring UTI’s and eventually led to the decision to remove the neobladder and replace it with an ileal conduit, which routes the urine straight out through the small stoma in my abdomen and into an ostomy bag, without retaining it in the body. This solution works nearly perfectly for me – what a relief.
I am now cancer-free, living a normal life and having no trouble keeping myself healthy. I learned how vital it is to hydrate yourself following bladder cancer – you must drink at least 4 liters of water per day — in order to avoid UTIs (and yes, you can have a UTI even if you don’t have a bladder)!
I have the perfect urostomy for my needs (note: it takes a while to find the right bag to work well with your body) and I know how often I need to change it. I take naps when I feel fatigued, but I also do mountain hiking, have milked goats and made goat cheese for all the years following my surgeries, and I have uproarious fun with my two grandchildren.
Life after bladder cancer is great for me!
The disease and its aftermath have taught me the following things:
- Appreciate every single day
- It is therapeutic to help others in similar circumstances
- Actively work to do things today I may not be able to do tomorrow
- Work to help others avoid BC through healthy habits
- Work with BCAN to help the newly diagnosed, so that they can learn from my experience
I found that getting help from Inspire’s BCAN patient chat board was a lifesaver all along the path of my diagnosis and treatments. I then got involved with the BCAN Connection as a volunteer – it’s critical to me, because it’s the only organization available to BC patients and their caregivers.
I would give the following advice to those newly diagnosed:
- Be your own strongest patient advocate, keep notes and read credible info sources to be fully informed
- Get a second opinion from an NCCN facility
- Get into the Inspire Bladder Cancer community for learning and moral support
- Don’t be a victim, be a champion of your cause
- Get a new best friend: water!