Hello all. As you may have guessed, my name is Greg and I live in IL. I am 65 yo, and retired. I have never been diagnosed with any type of cancer before. I have no clue what to expect. My brother was diagnosed with bladder cancer 4 years ago. He now wears a urostomy bag, and will for the rest of his life. He has also had throat cancer, and lung cancer. So far he has beaten all of these to a degree.
My bladder cancer was accidentally discovered because of an MRI (I think) I had due to an aneurysm. The aneurysm was successfully repaired and all is well in that regard.
I have done a little reading on this forum, but I must admit, I don't understand most of the terminology. I was diagnosed in October of 2019. I don't know the name of the procedure, but he went into my bladder, through the urethra and removed what he could. My Dr. recommended 6 immunotherapy treatments, over a period of 6 weeks, with the drug BCG. As we all know, there is a global shortage of this drug, and so far, I don't see that changing anytime soon. We have been in contact with my Dr. office and have been told, when he knows something, he will tell us. I was told that with early detection and treatment, bladder cancer has a very high cure rate. My question is, How long do I wait before seeking an alternative treatment? Possibly another Dr. altogether. Is 3 months a long time? 6 months? 1 year? I don't have a clue. Thanks for any help you can give me. Greg
Hello, Greg! Sorry to hear your diagnosis but am glad that you are here since you may find answers to some of your questions.
First, the procedure you had is called a TURB, short for “transurethral resection of the bladder” where the urologist removes as much of the obvious tumor as he can and sends samples to the pathology lab for a complete diagnosis. Based on the treatment recommendations
my guess would be that you have high grade but still localized ( not spread beyond the bladder lining or into the muscle) transitional cell carcinoma (the most common type.).
The good news is that this is highly treatable with BCG. Yes, there was a severe shortage about a year ago, but most urologists seem to be able to get it now. If your current doctor cannot, this would be a good time for you to seek a second opinion and/or treatment somewhere else with a urologist who has access to a supply of BCG. The usual wait is about a month after the TURB so that the bladder heals from the surgery.
BCG has side effects but the treatment is very doable and is a life saver for patients with non-invasive high grade bladder cancer
Please feel free to ask any questions you have. We are not doctors here but we are people like you who knew NOTHING about bladders when we were diagnosed.
Wishing you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I was in same/similar boat in July. I read advice hear to go to a NCI designated Cancer Center and decided not to because it would be a lot of travel.
I finally did take the advice and went to Sloan Kettering in November. They told me they had BCG for high risk patients like me. My local never got it in plus their were errors I never would have discovered but for going to Sloan.
So I highly recommend you take that advice and seek second opinion at a NCI Center. See attached. And all the best on you journey!
Thank You so much for your replies. I am located on the western edge of IL, 4 hours from Chicago. I looked up NCI locations for Iowa and noticed The University of Iowa in Iowa City. This is much closer and is where I had my aneurysm surgery. My present urologist had mentioned previously that he may recommend me to Iowa City. My wife is going to call today and see if they can start that process. Hopefully, this will speed thing up. Thank You again Greg
"My Dr. recommended 6 immunotherapy treatments, over a period of 6 weeks, with the drug BCG."
I just finished my "induction" phase of BCG: 6 treatments over a period of 6 weeks. I will echo Sara's comment below. The process was tolerable for me. For me, the worst part of the instillation (getting the BCG inside the bladder) is the worry prior. Poor sleep the night before. Anxiety while sitting in the waiting room and again once in the treatment room awaiting the return of the nurse after administering numbing agent. The procedure itself took only a couple of minutes and was (only) uncomfortable. Side effects after the first treatment were nil. Treatment #2 and #3 weren't much fun however. I had moderate to severe pain immediately after urinating accompanied by spasms and gross hematuria. Good news is that once I "flushed" the chemical agent out over the next 4-6 hours, drinking plenty of water, things returned to almost normal. These side-effects were significantly reduced after treatment #4. By treatment #6 (yesterday) the side-effects were 2 on scale of 1-10. Holding the chemical for the full 2 hour "dwell time" wasn't an issue during any of the instillations.
There are some things that can be done to minimize negative side effects from BCG. Folks here are happy to share what they've learned and to provide additional support along the way.
As we all know, there is a global shortage of this drug, and so far, I don't see that changing anytime soon. We have been in contact with my Dr. office and have been told, when he knows something, he will tell us.
When my cancer grade progressed from low grade to high a few months ago, my urologist recommended intravesical treatment using a "chemical agent." I asked him about the BCG shortage. He shared some concern about that with me, stating that he'd go with gemcitabine if BCG wasn't available. With that said, I was given full (50 mg) doses throughout this recent induction. When asked about it yesterday, the nurse said she is unaware of any interruptions or reduction in clinic orders. I'm being treated at a local clinic in a mid-sized city (Syracuse, NY pop 145,000) located in Central New York (8 county area of about 1.2 million people).
It's good you are looking to the University of Iowa for care. I find the "we'll call you when we know something" attitude troubling. Your "how long do I wait" question is a good one. I asked same question here when my first tumor was found. Much of the answer to that question would be driven by the grade and stage of your cancer. As Sara said, we can assume you have high grade, non-invasive cancer (as do I) since BCG is being recommended. In short, I would be proactive. NO WAY would I wait a year. When my grade went from low to high, I interpreted that to mean: the cancer has become more aggressive and it's time to get busy.
Best of luck to you. Please keep us posted on your progress and by all means ASK QUESTIONS. Knowledge is power and what I don't know could kill me.