Questions from a 32 year old beginning BCG

[ReneeM]

Hi everyone,

I’m so happy to have found this forum! I’m a 32 year old women in Toronto and was diagnosed with bladder cancer about a month ago. After a cystoscopy looked concerning, they took a small biopsy (lining only, not the muscle) and found carcinoma in situ. They don’t want to do another biopsy for fear of puncturing the bladder. Their suggestion is to begin with BCG followed by another cystoscopy. My concern is they don’t know if it’s muscle invasive or not and if so, will it spread? Am I at risk of being under treated with the BCG if it’s in the muscle? Should I ask for a second opinion? I’m scheduled to begin BCG Oct 25th for 6 weeks and I would love to speak with someone who has been down this road and can shed some light on all of this!

Many thanks,

Renee

[Jack Moon]

Hi ReneeM
Sorry you have been diagnosed with bladder cancer. I personally have no experience with CIS. The link below is from the Canadian Urologist Association guideline for treating NMIBC.

https://www.cua.org/themes/web/assets/files/non_muscle_invasive_bladder_cancer_cuaguidelines3320.pdf

TURBT
• The quality of the initial transurethral resection of bladder
tumour (TURBT) is of utmost importance. Complete
resection of all visible tumours with adequate depth
to include muscularis propria should be performed
(Grade A recommendation).

Jack

[marysue]

Hi Renee:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I’ve always said that we are the club that no one wants to belong to.

I too, would be concerned if I was in your shoes.  You are certainly very young to be dealing with this disease. My suggestion would be to ask of your doctor(s) the very thing that you have mentioned here: If no muscle sample was taken during the biopsy to check for muscle invasive bladder cancer, how do they know if BCG treatments are sufficient?  They may have an answer for that. If not, I think I’d be considering the idea of a second opinion. As you already know, the stage and grade of bladder cancer makes a big difference in treatment protocol.  However that being said, the majority of bladder cancer cases are early stage upon diagnosis so my suggestion here is try your best to think positive.  Not an easy task, I know.

As for BCG treatments, I’ve had 21 of those suckers over a 3 year time period: (2008-2012).  If you have any questions you can respond here or send me a private message.  I was fortunate that both times that I had bladder cancer (2008, 2010) it was very superficial albeit high grade which was why my uro recommended BCG treatments.  I have been cancer free since September 2010. BCG is still one of the best treatments around for non-muscle invasive bladder cancer albeit it is not fun getting catheterized every week.  Side effects generally are fatigue, flu like symptoms that will fade once the treatments are over.  People really vary with how side effects affect them.  I had quite  a few but persevered to save my bladder and am now very glad that I did. I hope my suggestions help.  Best wishes going forward.  ((((HUGS))))

 

[ReneeM]

Thanks for your message Jack – the information you provided is very helpful and I’m going to speak with the surgeon tomorrow.

Thanks again,

Renee

[ReneeM]

Thank you Mary Sue,

I’m speaking with my surgeon tomorrow and I am going to ask for a second opinion. I really appreciate your kind words!

Renee

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