Today, Friday April 8, 2016, I had a day surgery to scrape urinary bladder cancer out of my bladder and to place some chemo into the bladder. The chemo was an attempt to keep the cancer from recurring. This was the third time that the scraping procedure has been performed and at least the second time that chemo has been applied. I was released from the hospital a few hours after the procedure which took about an hour. There will be a biopsy of the material removed from me and my surgeon will let me know of the report. In the previous treatments, I was told that the lesions were “normal” bladder cancer, not carcinoid and that bladder cancer is most usually related to smoking. The procedure was deemed successful enough that I can go on a four day fly fishing trip in the Colorado mountains on Tuesday the 12th.
The surgeon and I will meet soon and decide whether to commit to a treatment called BCG. This is a type of immunotherapy drug used to prevent tuberculosis (TB), but it’s also an effective treatment for some non-invasive bladder cancers. It’s given directly into the bladder. It’s supposed to prevent bladder cancer from recurring and from becoming invasive. My surgeon says that the treatment lasts about three hours total and is performed once a week for eight weeks and then periodically monthly or quarterly. I don’t yet have the full schedule that he proposes. The drug is actually composed of dead tuberculosis cells and there is a small chance of contracting tuberculosis. My brother has had this treatment and it is apparently working for him.
What is the relationship to Neuroendocrine Cancer?
I had general anesthesia and I DID NOT have a carcinoid crisis and DID NOT have to stay the night in an ICU! Whoopee!!! For those of you unfamiliar with Carcinoid Crisis, you can read these:
I have found over the five years since my diagnosis that I must always make sure that the surgeon and the anesthesiologist be well informed about NETs and carcinoid crisis and that they are prepared to take steps to avoid it or stop it.
The Doctors and Staff
Because I have changed insurance, this procedure was performed in a whole new environment for me. Different surgeon, anesthesiologist, nurses and even hospital. I did my usual song and dance about the neuroendocrine cancer to the surgeon two months before the procedure and then reminded him a week before the procedure. When the hospital called me for pre-operative arrangements, I did the song and dance again. In all those songs I emphasized that the anesthesiologist had to be selected and notified in advance of these concerns. (Hospitals often select anesthesiologists the day they are needed. Don’t let that happen!)
The surgeon was very supportive from the beginning and accepted a booklet for doctors about NETs. The anesthesiologist called me at 8:00 pm the day before the surgery and we discussed my medical history. We also talked about the facts that anesthesiologists are taught about carcinoid crisis in school but may never see a NETs patient in their career. He thought that he had seen one but wasn’t sure. Both doctors expressed thanks that I had the knowledge and the willingness to insist on refreshing their knowledge of the subject. The nurses also seemed to have refreshed their knowledge on the subject.
All in, this was a very positive experience (given that it was a cancer procedure!)
May we all have the best possible outcomes,