IP/IC Bladder Sparing Therapies Support

[JAK]

Am new to this forum, Hello All, I am looking to speak with women who have IC or IP or taking bladder sparing therapies in the hopes this will help me with my decision. Many thanks, Julie

[Jack Moon]

Hi Julie

Hopefully a few females will respond to your questions soon. I will be emailing a few this morning who can assist you in your decision.
All the best,
Jack

[Susan]

Hi Julie

I am a (now) 70 year old woman who had ileal conduit surgery in 2011, when I was almost 66 years old.

I was diagnosed with transitional cell carcinoma in 2007. Over the next 4 years I had repeated TURBT’s to remove recurring tumours. At one point, the cancer changed from transitional cell, non-invasive to carcinoma-in-situ, a more aggressive cancer, although still non-invasive.

I was offered the option of bladder removal in 2011, or the option of waiting to see if/when the tumours would become invasive, at which point there would be no choice other than bladder removal.

I am a careful person, and I was tired of living with the constant disappointment of recurring tumours, as well as the anxiety, so opted to have my bladder removed at that point. I had a surgeon I trusted greatly, and his advice to me was that ileal conduit was the simplest surgery and had the fewest complications later in life. Wearing a pouch on my belly was not a big concern of mine as far as body image goes.

My recovery from the surgery was uneventful, although I was taken aback by the fatigue and weakness following the operation. I had never had surgery before other than the TURBT’s, and they became almost routine to me over the 4 years I had them.
After about 6 months, though, I felt back to “normal”. Having the ileal conduit hasn’t really changed my life at all. I travel extensively, swim, bike, hike and snowshoe. I have developed an arthritic knee which is cramping my style somewhat – the compromises I make because of the knee make it even more evident that the IC has not affected my life. I would compare it to wearing contacts perhaps, although it can be a little messier maybe, haha. This is not to say there wasn’t a period of time when I felt quite inept and nervous about my new “normal”, but within a year or so my new way of urinating became a complete non-issue in my daily life. It even has a big plus – I stand now to urinate instead of sitting or squatting – a big plus for a woman!

I cannot offer any opinions on the IP or the bladder sparing. But I would suggest that you get the name of a very reputable surgeon (maybe from Bladder Cancer Canada) and have him or her advise you on which procedure would best suit your personality and your lifestyle.

[JAK]

So many thanks Jack and Susan for your kind replies.

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