This is the fourth installment in Alison's ongoing story of her bladder cancer treatment. You'll find the others if you search this blog for Alison.
After the Surgery, the Treatment Plan
So I had to walk around for a whole week with a catheter inside, after the surgery. My doctor said it was so my bladder could heal from the tumor removal – by not getting full and empty, full and empty, I guess. Now THAT was inconvenient. They keep a catheter in a person’s bladder by inflating a small balloon, next to or around the actual tubing, so the tubing won’t slip out. The balloon is bigger than the exit. The problem is, the balloon rests, most of the time, right on the area of nerve tissue that tells you you have to go. A week of having to go, only not really having to go, because I was already “going” – the tubing constantly emptying into a bag. Oh, and where was the bag? Why, tied around my leg of course. Day and night. I emptied it pretty often so I wouldn’t audibly slosh when I walked.
The other times I had had a catheter installed – during a C-section childbirth and then during a different surgery – I had a big problem restarting the normal procedure when the catheter was taken out. I mean, I couldn’t hardly. I had to run water, and pour water, and think about water, and even then it was very difficult and quite awhile before all was smoothly correct. This time, however, my doctor had a great trick to avoid that problem and I share it here for all of you with post-catheter bladder shyness: The nurse puts in 180 ccs of sterile water into the catheter tubing, a little less than a cup. Then she takes the catheter out, and then you go without hesitation, due to sheer volume. A great improvement, and no further problems.
So back in the office my doctor sits down with me all serious. I have bladder cancer. It is in situ, which means it has not spread, and none of the biopsies of bladder tissue showed any rootlets going into the muscle. In situ growths are at a low “stage,” meaning superficial, early. All this is very good. However, the tumors are high grade, meaning the tumor cells are nasty, already way different from normal cells, and ready to grow fast and spread if they can. In other words, surgery would not be enough to deal with this cancer once and for all. Remember, I could see the tumor all spread out (see #2, “Cystoscopy Art), and it seems obvious that any number of microscopic pieces of it could be left inside after surgery. Treatment must continue.
This next part sounds like science fiction. My treatment will take the form, he says, of a local instillation of attenuated tuberculosis vaccine. They will take this liquid substance, actual TB vaccine, made from weakened bovine TB bacilli, and put it inside my bladder. They will do this once a week for eight weeks.
And here is how it works: the TB bacilli, unlike that wily cancer, will alert my immune system to get down there and get to work. My white cells, my T-cells, my interferon, my interleukin, and who knows what else – they will all scream “Fear, fire, foe, awake!” and charge into my bladder and start sweeping. Or gobbling. Or chipper-shredding. Or whatever they do to this attenuated TB vaccine. And get rid of the cancer at the same time. Thus: it is not chemotherapy, it is immunotherapy.
In genuine tuberculosis, the immune system cells form capsules around the bacteria. In my situation, this is unlikely to happen. But it could. I could develop granulomas, little capsules of TB cells and immune system cells. If that would happen, this treatment would have given me TB, which would then be treated with antibiotics.
When I start to tell people that this is going to happen – treatment with TB vaccine – some ask, “Is this experimental?” They are surprised, as I was, to learn that this treatment for bladder cancer has been going on since the 1980s, with good results. It is called “BCG” therapy, which stands for “Bacillus Calmette-Guerin” after Drs. Calmette and Guerin, one a bacteriologist and the other a veterinarian, who developed the vaccine early in the 20th century. Up to two-thirds of patients treated with BCG never have a recurrence of bladder cancer. My doctor says, if I do, we can repeat the regimen. Or do it as a maintenance therapy, say every 3 months for a year. If the cancer comes back after that, or if the therapy doesn’t work, well, the only option is surgical removal of the bladder. A bridge to cross when I come to it.
I will, however, have the regular scans and appointments characteristic of living in Cancerland. I asked him at the end, “What about skipping all that anxiety and testing and just taking my bladder out now?” He said, “Well, what if the treatment works? We will have saved it. We only want to remove the bladder if we have failed to control the disease.” (Actually I misquote him here. He said, “If you fail BCG treatment.” Meaning I am the failure. Not the treatment. Doctors always talk that way. I don’t know why.)
Next up: No problemo.