Linda's Bladder Cancer Story: Misdiagnosis, Insurance Troubles, and a Radical Cystectomy

The Editorial Team at BladderCancer.net is highlighting people in the bladder cancer community. We talked to Linda who told us about experiencing bladder cancer symptoms and trying to figure out what was causing them while, at the same time, losing her job and therefore her insurance! Read more to hear Linda's story and how she navigated this stressful time in her life.

Frequent urination and led to being treated for a UTI

Around October or November 2013, I started having to urinate much more frequently than I thought I should. I could not seem to pass a bathroom and not go in. I called my GP, and he thought it was probably a UTI and called in a prescription. The prescription seemed to make a difference for a short while. Later, I again had the same symptoms and again was called in a prescription. This went on until May 2014 when I finally said, "Enough is enough - let's figure this out."

Making an appointment with a urologist

I demanded a urine test and a few days later was told that it came back clean - no infection. I knew that something was wrong and made an appt with a local urologist for June. He looked at my test and thought originally that it might be my diet as there was nothing to indicate otherwise in my urine tests. We agreed to have me restrict my diet to non-acidic foods only for a couple weeks. During this time I began to experience severe bladder spasms. They honestly felt like I was having contractions to give birth and would last 10 - 15 seconds. I was given a prescription for the spasms that seemed to help but then I had absolutely no appetite. By this time, I was urinating up to every 20 minutes. Unfortunately, during this time we were taking to conservatively figure out what was going on, my company suddenly closed and I was left with no job and no insurance.

Applying for Obamacare

I applied for Obamacare because I think, deep down, I knew something was seriously wrong and that I needed insurance regardless. Unfortunately, Obamacare does not kick in until the first of the following month which put me at August 1, 2014 with a $1K premium. As soon as I received my insurance card, I went to the local hospital emergency room and told them that I did not know what my problem was but I needed someone to figure it out. I was given several tests, and my urologist was also called. After 3 days in the hospital, I was diagnosed with hydronephrosis by the attending and sent home.

A cystoscopy, 2 TURBTs, a job interview, and a home burglary all at once!

Luckily, my urologist did not agree and scheduled me for an immediate cystoscopy. It resulted in him finding a large tumor at the top of my urethra. He scheduled me for a TURBT the next week, and the results showed a T1Hg transitional cancer tumor. 3 weeks later, I had another TURBT and it showed that there were more tumors. Please note that during this time, I was interviewing for a new job - at age 63 - and during one of the short times I was away from home, my home was burglarized. Clearly, this was an extremely stressful time.

A procedure to remove cancer cells left me pretty incontinent

After my second TURBT, my urologist, a urological oncologist surgeon, and I discussed my options. Unfortunately, during the second TURBT it was discovered that I also had cancer cells in my urethra, so the majority of that was removed during the TURBT, leaving me pretty much incontinent and in adult diapers. Life was pretty grim.

Discussing my options

I did some research and discussed BCG and other options. My doctors both agreed that BGC would certainly be something they would try, but they felt that due to my incontinence, it would be a challenge. I found some sites online and learned what I could about my issue without digging too deep. I decided that BCG was, in my opinion, a cr@pshoot. I had high-grade cancer, and if the BCG did not work, I may find myself into stage 2 of this disease. I also did not want to wear adult diapers for the future and just honestly wanted to get a new job and get on with my life.

I wanted my life back

I was offered a job, and when I told the hiring person I was possibly having a medical procedure in the future and might not be able to start right away, she was fine with that. I spent a few days really thinking about my options and, as I am not a gambler and stress about everything, I was not comfortable with the possibility of having BCG probably several times per year and having surveillance for years to ensure that the procedure worked, etc. I decided it was not for me. I wanted the quickest route to get my life back.

Choosing a radical cystectomy and an ileal conduit

I decided on RC/IC [radical cystectomy and an ileal conduit] because due to my incontinence, the neobladder and Indiana pouch (IP) might not have worked. Also, I had done enough research to know that I did not want to have a 4-6 month or more recovery with a neobladder, nor did I want to cath myself with the IP, and I certainly did not want to get up every 4 hours or less to urinate.

Officially cancer-free

I felt very good about my decision and spent time with the surgeon who was very experienced with this surgery. My surgery was scheduled for the end of October 2014. I accepted the job and assumed it would be a few months before I could work. A couple of days later, I received a call from the surgeon's office that a patient had canceled their surgery for 9/30/14 due to an illness and asked if I wanted that date. Things moved very quickly, and I had my RC/IC late Tuesday morning - early evening 9/30/14. I could not have asked for something so challenging to go more smoothly. I had robotic surgery with IC, hysterectomy, and the removal of 19 lymph nodes. I have had clean scans, chest X-rays, and blood work for the past 5 years and now am officially considered cancer-free. I will continue to have surveillance with fewer tests.

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