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Just returned from my consult this afternoon with my markham urologist following my second turbt . My first turbt was in april followed by 6 weeks of BCG
(( mitomyacin with each turbt)
My First path diagnosis was pt1. high grade Non invasive
Todays path diagnosis was ” no residual carcinoma present”He asked me to come back in 4 months for a further cystoscope and every 4 months thereafter. And if there is no recurrence within 18 months i will likely be pretty home free, if i do have a recurrence within that period i will have another turbt plus one last six week round of BCG And if that doesnt work i will likely be a candidate for bladder removal.
I was expecting to be scheduled for maintenance BCG. It wasnt suggested . I asked why not. He said none of the five bladder cancer specialists in the two BC treatment hospitals in york region use followup bcg if no cancer is present and i would also run the risk of getting TB.
He said that there was no positive evidence of BCG maintenance treatment for someone with my history and present status of no bladder cancer.It seems to me from the research that the Lamm maintenance bcg program is highly successful . I am thrilled that i have no evidence of cancer now and thrilled i don’t have to continue bcg treatments but worrying that maybe i should! Do you think i should seek a second opinion?
Are there any urologists in toronto who subscribe to the bcg maintenance option?
JerryI did have BCG maintenance treatments from 2008 to 2009. Have been cancer free now seven years.
I think you will find several Uros in the Toronto area that do recommend BCG maintenance for patients initially diagnosed with high grade bladder cancer.
Glad to hear you are cancer free. Getting a 2nd opinion at a major cancer centre is always a good idea.
JackI got my dates for my second six session BCG treatments today…This was because of the results of my fifth bladder tumor operation last month showing the tumor was high grade…the first four ops were low grade…
I only had a six week session in 2008 and then ended up doing a second six week session followed by three three week maintenance sessions in 2011 following a reoccurrence in 2010. I believe that it is the repeat and the followup maintenance that has led to me being more than five years clear today. Maintenance treatments can be done at a lower dose to prevent severe side effects. My last four doses were reduced to 25% because of this. You may want to consider asking for a second opinion.
My dr has agreed, reluctantly, to give me maintenance BCG . It is the recommended protocol of the advisory committee of the Canadian Urological Association for non-invasive bladder cancer ( I can provide online copy if anyone would like a copy) My Dr told me ( angrily) it was my decision and responsibility and I should be aware of the risk of contracting TB ? I asked Dr. O’Donnell from USA (1 of the experts regarding BCG) about the TB and his maintenance protocol . Here is his reply:
Jerry, this is a very small but measurable chance of a TB like illness with BCG, which is a live form of a weakened cow tuberculosis bacteria. The chance is estimated at somewhere between 1/1000 – 1/10,000. This is recognized by persistent nightly fevers after getting BCG. It is typically treated with oral antibiotics for 6-12 months. There have been about a dozen reported deaths from overwhelming BCG infection over the past 38 years reported but it is clearly a very rare event. Nearly all authorities feel that the additional ~25% improvement in long term outcome attributed to BCG maintenance therapy is worth this marginal risk.
The protocols I gave you are one in the same: three series (A, B,C) of 3 week each. Series B is 6 months after series A. Series C is six months after series B. By the time you are 6 months out from Series C it is typically 2 years from the original cancer resection (Yours is bit different)
Since you are a bit off cycle for Series A, it can essentially start any time at least 3-4 weeks after your last procedure provided no bleeding and no UTI.
I can send you the published protocol (used for the BCG + interferon study) but not at the moment until I’m back in my office.
There is a large expert review coming out in the next few months. Once it is published, you may share it with your urologist.
Best regards,
Michael O’Donnell, MD
Some doctors see a patient discussion like yours as a personal judgement of them and their ability as a doctor which is why they get angry when a patient asks questions or wants to discuss options. My first uro was like that. If I asked him any questions he got defensive. While he is a good surgeon, his patient bedside manner leaves a lot to be desired. His attitude basically is “I’m the doctor and the man, you’re a woman and my patient. Don’t ask questions, just do as I say.” Needless to say as a 21st century woman that doesn’t sit with me very well. I always felt like he was hiding something and maybe not telling me the full truth about my situation. That is a right of every patient; to know their full story about what their problems are. I changed docs and am much happier because I feel like my new guy has my back and I can trust him. He answers all questions and is enthusiastic that I show an interest in learning about my body and bladder cancer.
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