I participate in an online support group for people with bladder cancer. Today Angela posted, “When I tell someone I have bladder cancer their reply is ‘Well that’s no big deal. If you’re ever going to get cancer that’s the best one to get.’”
Reading that--I can’t even imagine hearing it--is like running headlong into a brick wall. I have a hard time even knowing where to start with a response.
One part of me feels generous toward whatever hapless person said this to Angela. They probably meant it to be encouraging. Most people who are diagnosed with bladder cancer have early stage, low grade tumors that will never progress to be life threatening. But another part of me feels angry and frustrated and depressed. You never know in the moment if you are one of the people whose disease will remain non-lethal. You only know this in retrospect.
There’s a weird, kind of sick attitude among some of us with bladder cancer of being “jealous” of breast cancer because it has such a high profile. Media attention, research, and money have dramatically changed the landscape for breast cancer. Treatments and outcomes have improved. No such progress has been made with bladder cancer. The prognosis and treatment options haven’t improved over the last 20 years.
Bladder cancer is initially treated by removing tumors, a surgical procedure done under anesthesia. The gold standard is to repeat that procedure after six weeks to insure that all of the tumors were successfully removed. Depending on the diagnosis the next step could be a check-up in three months, six infusions of BCG over six weeks, or Radical Cystectomy. For women, an RC means losing the bladder, uterus, ovaries, fallopian tubes, cervix, front wall of the vagina, and the urethra. It is common to lose the ability to have or enjoy sex. The surgical response is extreme because once the cancer is through the muscle wall of the bladder, survival rates are very, very low.
Unless your diagnosis is Stage 4, most people with bladder cancer are not treated with chemotherapy. Instead the drug of choice is BCG, which is the tuberculosis vaccine. BCG is infused directly into the bladder. Typically, you have this infusion once a week for six weeks. Side effects of BCG range from very mild (some people have no negative response) to life threatening. I was lucky, suffering some side effects early on, but less as treatment continued because my doc reduced the dose. Even then, I was in tears because of the pain after my second treatment and felt tiredness that grew to exhaustion after six weeks. I could barely keep my eyes open on some days. And, I can’t begin to relate the suffering that others have endured from BCG.
In any case, if you keep your bladder you have cystoscopies every three months for several years, progressing to every six months and then yearly for the rest of your life. When tumors are found, they are removed surgically, sent for biopsy and BCG may be used again. Frequent scopes and frequent surgeries make bladder cancer the most expensive cancer to treat.
But now I have to stop myself because, dear god, this is an awful game to play. Does anyone win when the question is “Whose disease is the worst?” At my face-to-face support group I look around the group and I see some people who are visibly suffering. Others look like me, normal for lack of a better word. We don’t look sick. And, in some cases, we aren’t sick. Several of us have come through treatment and have received an “all clear” at our most recent check ups. Others aren’t sick at the moment, but will never be cured.
One thing we have in common though. We have all suffered. We have all had to wait for test results for days, the anxiety and fear ratcheting up with every hour. We have all endured tests, some of them painful. We have all felt confused and worried. We have felt alone. We have wondered whether we will survive. All of us have cancer, and none of us “got the best one you can get.”
There is no best kind of cancer. Any kind of cancer is a big deal.
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Filed under: BCG