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Bill’s Story: Rare, Unfair and a Big Scare

This story has been provided by Bill Seavey.  It has been edited for brevity.

How does an active tennis playing and hiking/biking early 70 year old white male–who never had any bad health habits–get diagnosed with a particularly virulent form of cancer about which medical professionals can’t very often definitively pinpoint the cause (or causes)?

After two surgeries–one at world famous Stanford Medical Center–and the commencement of a series of immunotherapy treatments, there are still SO many questions left unanswered.

Most likely, say medical professionals (but NOT as it turns out in my case) this cancer is caused by smoking or being exposed to industrial chemicals, and the latter explanation from the medical establishment is where things get somewhat murky.

Thus began my research into causes amidst the awful realization that I could die from it, even fairly soon.

The symptoms of having bladder cancer aren’t always obvious. For me there was no pain but indications CAN include back or pelvic discomfort and difficulty urinating. There can be discoloration in one’s urine (which could be caused by any one of many other things such as drinking carrot or cranberry juice). But seeing actual small blood spots, which I occasionally did, SHOULD alarm you but I admit I pretty much ignored them. Many such spots can only be seen under microscopic samples by your physician so you definitely need a urological exam–certainly recommended by the time you are in your fifties.

A definite risk factor is AGE apart from any others. The average age men get it is 73. I was 73!   When, otherwise, a perfectly healthy older man like myself is given a potential death sentence (unless treated), life does take a huge shift. I was diagnosed in January 2020 about the time the coronavirus began its relentless spread across the United States.. Here I was starting to live in fear every day and now there was a catastrophic nationwide and worldwide infirmity to contend with–especially striking down the elderly like myself–along with everyday Americans of middle age and even younger. I was facing a potential double whammy at the very worst time.

The lining of the bladder is muscle tissue which is where cancer cells initially invade. So in theory accumulated urine, being a fluid that’s noxious by definition and needs to get out of the body as quickly as possible (yet can stay in it as long as eight hours), can trigger cancer cell growth–not a pleasant thought. There is also little question that toxins that enter the bloodstream via the kidneys/ureters (such as those from cigarette smoke) can end up in the bladder and weaken the bladder lining. Which is one reason why medical people recommend that you drink at least six eight ounces of water daily to stay hydrated as well as to flush the bladder regularly.

When the cancer is found through what’s called a cytoscopy (where a scope goes through the urethra and examines the bladder lining) the only immediate remedy is what is called a TURBT (Transurethral Resection of a Bladder Tumor). The surgeon goes into the bladder while you are under general anesthesia and the cancer cells are carefully excised and removed. In my case the cells were considered “aggressive” yet they had not penetrated the muscle wall and gone into other parts of the body where they could have wreaked more havoc and affected more vital organs. I was in the very first stage of the cancer.

This happened in such a way with a fellow I know in my community who even had to have his bladder completely removed since it was so badly damaged. Today he wears an external bag called a urostomy pouch attached to his abdomen with what’s called a stoma that drains the urine. This obviously limits some movement and day to day functioning in general. Now THAT’s someone to really feel sorry for.

Knowing someone who actually had to have this done (and my connection was remarkable in its coincidentality since, again, the cancer is relatively rare–my contact never even knew anyone in his community with bladder cancer before me–was naturally alarming. Yet after my first surgery, parts of which went rather badly, I hesitated in having the recommended follow up treatments (BCG)–in fact, refused them–and some cancer was discovered three months later–too late to start the BCG treatment.

I also didn’t know that there is tumor relapse in between 50-70% of patients when no adjuvant treatment is given, and 15% of the cases develop muscle invasive cancer that likely will invade the rest of the body. Not a pretty picture.

When the recurring cancer was seen through a cytoscopy three months later, I was warned by my urologist that I might have only two years left to live if I didn’t go back into surgery–which I felt was a rather arbitrary and overly alarming figure, since survival for someone who has had a TURBT can be as long as 5 years. But living only 5 years, and possibly having a painful death, didn’t seem exactly desirable, either.

Nevertheless it was shocking to learn I had cancer again since I naturally hoped as most no doubt do that it would just go away and stay away after surgery. I started doing my own research to find out if there was a better place to do a followup surgery, since treatments by then were not possible or practical. I wanted the BEST even if I had to travel a fairly long distance to get it, and I wanted far fewer complications than I had had the first time with catheterization.

By this time I had finally realized that this cancer was nothing to toy with. I would disappoint not just my wife, children, grandchildren, friends and of course myself if I didn’t follow a protocol.

I come from a generation (baby boomers) that questioned everything (and maybe even thought we’d live forever, haha) and this was the cold, hard truth staring me in the face. It was go under the knife again OR live with the knowledge that I had not listened to the best medical advice and followed procedures that, fortunately, I could afford to pay for with my Medicare and supplemental Blue Cross coverage.

My Stanford surgeon turned out to be someone who had lectured and written in scientific journals as a specialist in bladder cancer. He headed a clinic within the center that was devoted to bladder cancer surgeries. Dr. Jay Shah was, no question, the man for me.

Stanford is a busy place. There are multiple ways they can screen you throughout their facilities and my wife was lucky to get past the initial gatekeepers. Once in the operating room I was attended to by at least a half dozen nurses, aides, technicians etc. as they prepared me for surgery. I was very well treated. I met with the Dr. Shah briefly and was quickly anesthetized. Like my previous surgery, I didn’t even know when I went “out,” and woke up with everything done. (It’s very strange to not know when you went to sleep, feel no pain during the procedure, and wake up, as it turned out, with absolutely no pain.) I was given after-surgery pain medications but never needed to use them. (I needed to have a catheter with a bag for urine strapped to my leg for 24 hours but was given instructions in how to remove it myself, which I did the following day.)

I went home the same day and did NOT have any lingering ill effects from the surgery, and was back on the tennis court in a week or so. The last time I had tried to play after surgery I couldn’t even get near a ball for weeks I was so weakened!

Follow up treatments with a state of the art chemo drug called gemcitabine were scheduled for about a month after the surgery at local French Hospital in San Luis Obispo. I did some research online and learned the drug has been effective in mitigating cancer growth in the bladder lining with minimal side effects, and this was verified by the nurse at a local hospital who has been in charge of conducting the treatments for several years. It has been written about by medical journals provided to me by my nurse Kathy. I learned that the four year recurrence rate for those treated with the drug plus saline is only 34%. I can surely live with that but occasional follow up treatments will be required. Kathy turned out to be a fountain of information and inspiration, yet I didn’t envy her job of infusing the compound into my bladder, and having to be a cheerleader for patients to “keep it in” for up to an hour or more–I lasted only twenty minutes following my first infusion. (It wasn’t painful, just uncomfortable “holding my liquor.”)

My wife Eleanor has been an absolute rock through all this and I can’t thank her enough. She has helped arrange appointments, accompanied me to all the doctor visits, driven all over kingdom come, advocated for me and, fortunately, forgiven me for my lapses as a husband and patient.

I’d like to be able to continue living my life feeling (and acting like) I don’t have cancer. But if it recurs, I have options. It’s hard for me to imagine being invalided (invalidated?) by this disease that I really have no idea of its origins. In that sense it is similar to the coronavirus, which people are getting and not always certain of what caused it. I will continue to live an active life and do the right things as long as I can.

I’ve always said, life isn’t fair. Disease can happen. We are born, we live, we die. Some of us get to live exceedingly well, others simply do not. I really have nothing much to complain about even though I got cancer, and hopefully will lick it long enough to live to a ripe old age.

 

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