I just had my sixth week of my initial BCG six-week cycle. I will get a cysto in 3 months. Even if my uro finds my bladder free of tumors, we will continue the maintenance cycle (like Rosemary's), 3 weeks every 3 months. We will do this for two years.
I had a rather large Ta tumor removed in January with no follow up treatment. Cysto in June revealed another tumor. Another Ta low grade tumor, another TURBT, thus following up now with BCG. I pray, pray, pray the BCG works. I had no problems with the BCG (slight achiness and fever night after treatment, especially worse during weeks 3 and 4, but nothing I couldn't handle). I did not have any mitomycin instillation immediately after my TURBTs. I kind of wish I knew about these before to discuss them with my uro.
But, as my very kind Dr. told me, "Be prepared" because he was sure it would come back.
And that's being realistic... but it's OK to hope. I've never had a recurrence in 6¾ years.
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
Hi Max: It seems we are all different and our BC's all react differently even when the same classifications. I had four TAG3 tumors removed last November (06) and the doctor waited for pathology (long story), then changed doctors and had two more TAG3 tumors removed Jan 8 (07) with Mitomycin D instilled after surgery. Then followed with 6 weeks of BCG.
Had clean recheck in April, followed by 3 weeks of BCG Maintenance. Had clean recheck in July and no BCG maintenance as my Oncologist decided that I have rare but severe reactions to the BCG.
I just went for my Oct 10th recheck and have a new tumor. Will have TURBT on Oct 22(07) to remove followed by instillation of Mitomycin C. I asked the Oncologist if I will need more BCG and he again said that due to my rare but severe reactions he wanted to wait for pathology and then we would discuss based on the outcome.
So for you Max, it is surely best to get several opinions based on your circumstances so you feel comfortable with the protocol that is suggested for you and your BC. I wish you the best and take care,
"Grandmothers are just antique little girls...."
Did either of you have Mitomycin C or any other chemical instilled in your bladder right at the TURB? I had been through 21 treatments of BCG because of an initial over graded biopsy report of a T1 grade II. It was later downgraded to a TA grade 2. In the seven years since my first diagnosis, I have had 4 recurrences. My last TURB in September of this year included, for the first time, an immediate instillation of 40 ML of Mitomycin C. I am encouraged to believe that instillation will be effective in stopping any recurrences. Rosemary, did not mention in this thread that she DID have Mitomycin C immediately after TURB so that could also account for her being "clear" for almost two years. I think it would be beneficial for all to state if any type "chemical" was instilled at TURB so we all can keep a running history and survey on the newest and seeming best results for each of us.. Rosie
It really depends on the type of tumor(s) you had when you started BCG whether maintenance is a good idea or not. If it was papillary, low grade, low risk no maintenance is required-is the usual approach. But for high risk tumors both the AUA and the EUA's guidelines say to use maintenance for best results, you can read the summaries here:
There are other risk factors to consider, such as recurrence, side effects/tolerability of the patient, patient preference and many others, I'm sure.
The newest guidelines are saying that people who have bad side effects can receive lowered maintenance doses with no lack of efficacy.
I'm not saying you (or anyobody) should necessarily pursue maintenance, I don't know enough about your pathology and history to make such a judgement (and I'm not a doctor either). Just want to say that maintenance is no longer something that belongs solely to Dr. Lamm, it's just that he's been studying it the longest. I wouldn't say it's questionable research (sorry Chris!), but has a lot of history behind it.
That said, I would rather my sister not need it (she is the one with bladder cancer) because prolonged treatments can cause side effects, sometimes bad ones that don't go away. That's why other things are also being studied, (low dose)BCG+Interferon, Mitomycin C/intravesical chemotherapy-both short and longer term protocols, new drugs are in trials. But the great response rate of BCG is hard to beat so it will take something very special to replace it as a treatment for non-muscle invasive blc.