All Clear…and a question.

[Chris Lee]

Hi Everyone,

So, I had my 2nd 3 month cysto this past Tuesday and thankfully it was all clear. I will be having another in May followed by another round of maintenance BCG in June. Yeh!!! I get to go a whole 3 months without anything being done to my bladder.

While I am pleased that I seem to be doing well, I do have a question regarding the re-occurrence of the cancer.

As many of us know, Bladder Cancer has a very high re-occurrence rate (as high as 80%). I know that everyone is different and that not everyone does have a re-occurrence but the numbers seem to be against many. My question is about the time frame of re-occurrences.
If any of those reading this did have a re-occurrence, when did it occur? How long was it from your last treatment/surgery was it that the cancer re-surfaced? I am especially interested in hearing from those who had a similar stage and grade as me, T1 high grade. Also in my case I had multiple tumors, 3 of them. I initially thought I had only 2 but on further reading of my chart reports it seems there were 3. I have read some papers that suggested the outcome is less favorable where there are multiple tumors, so any additional information might be helpful.

I thank you all in advance.

Chris

[Greg]

Chris:
Congratulations on the all clear!

I was first diagnosed with T1G3 with multiple tumours. Had 6 mitomycin treatments and then 3 monthly maintenance treatments after scope #2. Scope #3 was all clear. Scope #4 was also clear but I had additional 6 BCG treatments (not sure if my uro really knew the proper protocol). Scope #5 showed more tumours so about one year after my first TURBT I had my second TURBT which he then followed with 3 monthly Gemcitabine treatments. Scope #6 was clear. Scope #7 showed tumours followed by TURBT #3. Scope #8 showed tumours and I had TURBT #4 followed by six more mitomycin treatments. Scope #9 showed additional tumours followed by TURBT #5. These were muscle invasive but he still followed up with six mitomycin treatments rather than more aggressive surgery (a mistake I believe). Scope #10 showed no new tumours but at that point I asked for a second opinion and was referred to Sunnybrook. In the meantime, he did scope #11 and found more tumours and TURBT #6 removed them. Sunnybrook then took over my care and I had a radical cystectomy. This all took place in a two and a half year period.
Following my RC I managed three years clear and now I have had two instances of urethral recurrences. I’ve had one resection (in November) and am due for a second resection in the next couple of weeks at Sunnybrook.

The lesson everyone can take from my experience is to get to a major cancer centre with experienced uro-oncologists immediately and do not mess around with clinics or doctors who do not handle bladder cancer as a specialty. Loss of body parts and loss of life can be the result. And feel free to ask for a second opinion. If you are at a major cancer centre, the second opinion is likely built in since these major hospitals have tumour boards and reviews by peers and have multiple specialists in the hospital. I am benefitting from that now.

My experience is likely not the norm and you are already at a terrific hospital. But all I can share is my own journey to date.
Greg

[Jack Moon]

Hi Chris
Congrats on the all clear, fantastic news.
My initial diagnosis in 2005 is different than yours as I was TA low-med grade with 3 tumors 1 being large.
I began BCG in 2005 and did have a recurrence and another turbt, 1 low grade tumor. Had another 6 BCG treatments, an all clear, and then another small low grade recurrence in Nov 2007. Continued with BCG and BCG maintenance that ended in 2009. I have been all clear since that turbt Nov 2007.
Wishing all the best going forward.
Jack

[marysue]

Hi Chris! Congrats on the all clear!

My history is 2008 diagnosed with about 6-8 TaG3 tumours all urolethial papillary except for 1 or 2 that were CIS (flat tumours) I had a TURBT in Sept 2008 followed by 6 weeks of BCG. I was clear until July 2010 when a single TaG3 papillary tumour was found at my cysto. I had another TURBT in Sept 2010 followed by another 6 week round of BCG and then 1 year of maintenance treatments (3 sets of 3 weeks) finishing in Jan 2012. I have been clear since Sept 2010 and am now on annual checkups, the next in March 2014. I have every reason to believe I’m still clear.

My first uro told me that 6 weeks of BCG is 60-70% successful and adding a year of maintenance boosts that to over 80%. My second uro generally agrees with this and thinks that because I was able to get through 2 6 week rounds it may have boosted my odds even higher. At our BCG clinic there is some support amongst staff that Vitamin D boosts the effectiveness of BCG. I suggest that you run that idea past your doc and see what he thinks. I take 2000IU of Vitamin D in the winter since Calgary is very cold and right now I don’t walk outside much due to the icy roads and keep on 1000IU in the summer. The health food store where I go recommends liquid Vitamin D drops over pills saying that the liquid is absorbed by the body better. Whether the Vitamin supplements have helped I can’ t 100% say for sure but I do know that they have made me feel better overall. Of course check with your doctor or health practioner before going on any regime especially if you take meds for any other conditions.

[Mollygolly]

Hi Chris,

Congrats on your all clear!

My urologist told me the same thing about 80%. I also read documentation regarding tumour size, how many tumours and concomitant CIS. I also learned that some CIS may not be visualized during cystoscopy. I asked my urologist about all this stuff and he concurred.

I had T1G3, only one small papillary tumour and concomitant CIS. I had a TURBT in April 2012 to remove the tumour and he tried to scrape all the CIS. I started BCG at the end of April and was scheduled to have a cystoscopy in July. During my BCG treatments, I asked my urologist if he would remove my bladder. I strongly felt that bladder removal may provide me with the best odds. I had a child at home and I didn’t want to mess around with this disease. I spoke with my urologist about all my concerns and what if’s. He agreed to do the surgery.

My final pathology after total cystectomy showed that I still had CIS present in my bladder. I was BCG failure. Had I not had the surgery, he would have recommended bladder removal at my cystoscopy. I have heard of some people being able to retain their bladders for many years following BCG protocol.
One must be vigilant and never turn their back on this beast!

I wish you continued success with BCG and may you remain cancer free!

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