Jim

The median age of diagnosis is 63 and average survival rate is 5 years, with rates diminishing significantly with age. Normally, treatment consists of watchful monitoring until symptoms appear and then 6-8 sessions of chemotherapy, but in my case, because of a high bone marrow infiltration rate (80%), anemia, and high blood viscosity (IGMs 20 times normal), my oncologist suggested immediate chemotherapy, with vincristine, cyclophosphamide, prednisone, and rituximab would have a good chance of putting the disease in remission for possible 3-5 years. After my second infusion on August 17, my prostate (BPH) shut down, requiring use of a catheter and surgery (TURP). I had scheduled an appointment with a urologist for some time and he agreed to squeeze me in between other appointments on Sept 1. Upon examination he placed me on the “urgent” list, which he said would probably take about 4 weeks. When I got my date (Oct 12), I sent an email to the local newspaper with copies to the local health authority, Minister of Health, and Premier, asking if anyone could help. I received a letter the next day from the local health authority advising that they had been able to move my surgery up to the 28th of September. Meanwhile, I made repeated trips to Emergency because my catheter kept plugging up; they finally showed me how to irrigate it myself at home. The day after surgery (Friday) I was sent home and told to remove the catheter on Saturday, which I did. I still could not void my bladder so back to Emergency again on Sunday for another catheter, and remaining overnight so my urologist could see me Monday morning. He told me to remove the catheter Wednesday morning and see him that afternoon in his office. Upon examination, he determined some tissue had collapsed and he would put me at the top of the “urgent” list for a second surgery. I sent another round of emails, more urgent than the first and requesting I be sent out of province if necessary so I could resume chemotherapy asap. I was finally scheduled again for Oct 16. This time they kept me in the hospital until the catheter was removed and I could void my bladder on my own. Throughout this process, I have also been battling infection, initially diagnosed back in August, but a culture done only after a week of Cipro was ineffective.After my first surgery, I was once again infected and spent another week on Cipro (with the same lack of results) and only after making 3 calls (2 to my GP and 1 to my urologist) it was discovered that the hospital lab had failed to communicate the results of my culture. So I had been on the wrong medication for a week. Then at the time of my second surgery, they discovered I had a “super bug” (ESBL) for which I am currently treating with Macrobid. In the last 2 months I’ve had 6 catheters, 2 surgeries, and made 6 0r 7 trips to Emergency, but I don’t want this detail to obscure the forest for the trees. My oncologist says I cannot resume chemotherapy until 4 weeks after surgery to avoid risk of infection. The fact to be emphasized is that more than 3 months will have elapsed until I can receive chemotherapy again for a cancer that is terminal, simply because I could not get immediate surgery for a routine propblem that was unrelated to the cancer. And the only thing the medical authorities could do was throw up their hands and say there was nothing they could do. So despite the fact that I have a terminal cancer that is treatable by chemotherapy, I have lost at least 3 months getting the treatment I need because of the waiting list for prostate surgery. As I said in my 2nd email to the authorities, this should happen only in a third world country.