new to the site (urethral cancer)

[DianeG]

I live in Winnipeg Manitoba, female and 54 yrs old and just diagnosed with urethral cancer. I saw a urologic oncologist (who is recommending complete removal of bladder and hysterectomy surgery, plus more) and a radiation oncologist, and on Tuesday next week will see a chemo dr. Apparently the cancer I have is quite rare and I am unsure of what I am going to do. Might have a chance to have brachytherapy but the only dr in Manitoba that was doing that has just retired, I was told I might have a chance to have that done in Toronto at the Princess Margaret. But I am wondering if I should just have the surgery. The cancer is stage T2 and aggressive but I am still asking for more info, as the MRI did not show any involvement in the bladder or lymph nodes. I would really like to talk to someone about anterior exenteration surgery, as it seems like such a “severe” option.

Hope this is an appropriate request?
Thanks
Diane

[Jack Moon]

Hi Diane

Is your Urologist/Surgeon in Winnipeg Dr Darrel Drachenberg? He is one of the top bladder cancer specialist in Canada.
Jack

[KIOWA]

I think it would help to round up as much information as you can, be sure to get the results of the biopsies and a second opinion is also a good idea. Good luck to you. Keep us posted. Anterior exenteration really is pretty involved and I would reserve that as a last resort. I suspect this can be handled without going that far. That’s a pretty extreme procedure usually used in uterine cancer.

Kiowa

[DianeG]

Hi Jack,
Thank you for the reply. The surgeon I saw was Dr. Drachenberg, that is great that he is so highly regarded.
Diane

[marysue]

It does seem like a very extreme move. I would call the uro’s office and tell the staff you need a decent amount of time to see the uro so you can get a lot of questions answered. Take someone with you. This is a very big decision to make and you want to make sure that you are ok with it. It wouldn’t hurt to ask for a second opinion either. If the bladder and nodes are not involved it does seem extreme. However since the urethra is connected to the bladder and shares the same type of cells that could be why he wants you to consider it. I would ask about hysterectomy options because if you have to remove the reproductive organs you will experience surgical menopause if you haven’t gone through it already. That is tough enough let alone deal with a cysectomy and the reconstructive surgery. I suggest if he doesn’t give/have much information about the hysterectomy side of it that a respected gynocologist or a reproductive oncologist be consulted. That way I think that you would have the true picture of how risky your situation is and it will help you decide how big a surgery you actually need. I would also ask if the brachytherapy option is available what are the odds it woudl be successful in your case.

[DianeG]

Hi Marysue,
Thanks for all your suggestions. Originally I was seen by 3 gynecologist, interesting none of them knew what was going on, they referred to me an urologist. I am not in menopause, so yes, not only am I to lose my bladder but a hysterectomy (menopause) and some external excision(s). I was told (and seen) research from Princess Margaret on brachytherapy and this type of rare cancer but the study sample is quite small. It would be great to hear from a “real” person who under-went this type of radiation from that hospital, that’s what I was hoping through this site and the contacts here. Thanks again.
Diane

[KIOWA]

Hi Dianne. I posted a response to this on “Discussion with patients and caregivers.

Kiowa

[Author]

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