hi, my name is janine…..

[janine]

my bladder cancer was found by fluke – during some unrelated diagnostic imaging tests. i must say, i didn’t really give it too much thought – i was more a deer in the headlights, with my partner doing the research and taking notes in doctor’s meetings. i am 51 and fairly athletic.

a dose-dense MVAC routine was prescribed, which i completed. i went through hell for more than half of it, but i completed it. has anyone done this protocol? how long does it take to get “back to normal”? it really affected my heart rate, which is limiting my activity. i am going stir crazy. it was a very tough protocol.

we went for a second opinion for surgical options in hamilton, once the chemo was complete. the doc there questioned the original diagnosis, and scheduled another turbt biopsy the end of this month (my cancer is in the muscle wall – not on the inside of my bladder). now, i’m trying to come to terms with imminent surgery – i am keeping my fingers crossed that i can keep my bladder (according to all, i am atypical case with the way the cancer is presenting itself – no one knows what to do with me).

all this, combined with a partner that is close to leaving me, and my mind is whirling with not-so-nice stuff.

i have many questions about surgical options, etc. but just wanted to say hi first.

[Gord]

Hi Janine, first of all, sorry that you have need of the Bladder Cancer website, but so glad you found it, and have reached out! There are many on here that have been where you are. While we do not offer medical advice, we can encourage, suggest questions to ask your medical team, and share our journeys, which can all be a big help on your own journey. These days can be very rough, but congrats on completing chemo. Hopefully you will be feeling a little better soon. Just wanted to say if you are having your 2nd opinion at the McMaster Uro Clinic at St Joes in Hamilton, you are in good hands. I did my three round/three month chemo at Juravinski before having my bladder removed in June 2013 by Dr Shayegan at St Joes. I was Stage 2. Bladder gone, cancer gone! I chose the neo bladder, but most will tell you that they adjust to whatever diversion they end up with. Be sure to get your pathology reports, the good people at BCC can help you understand them. I would encourage you to call the BCC toll free number, and they should be able to help you find someone who has been down a similar path to talk to. Keep reaching out, we are here to help.
Gord

[janine]

Thanks, Gord – i appreciate your response. My second opinion for surgery was, indeed, dr shayegan. it never dawned on me to question my original pathology – nor did my oncologist (valdes) in kitchener. shayegan took one look at my pre- and post- chemo scans and said “i don’t believe the original pathology”, and immediately ordered the december pathology from guelph. the way my cancer is presenting itself is not typical, so the “type” of cancer cells, i guess, is questionable. shayegan seems intrigued by this, and it is almost as if he is treating me as a challenge/case study. either way, i feel very comfortable knowing he’s my guy. that doesn’t help me make a decision on what type of urinary diversion i choose though.

[Saldcorn]

Hi Janine,
Gord is absolutely right about all the support BCC is happy to provide. I was diagnosed with Stage 2 highly aggressive MIBC in June 2016. By the time of the RC, it was Stage 3. To this day, I don’t know how I would’ve kept my sanity without the people on this site. Never hesitate to post here.

Also as Gord said, most people seem happy with their diversions. I think it’s really a matter of getting used to whatever you choose. I have a neo, and while ‘happy’ with it is probably not quite accurate, ‘content’ and ‘grateful’ definitely are. After confusing and frustrating myself no end, I finally sat down and made a list of all the ‘cons’ associated with each choice. After I did that, I tried to decide which list was more tolerable for me.

Also, after the surgery, after the CCAC home care, I was still able, through BCC, to talk to women who had experienced what I was experiencing.
I’m glad you introduced yourself. Everyone is here for you.
Sue

[marysue]

Hi Janine:

I add my voice to the others in welcoming you to Bladder Cancer Canada. As it has been mentioned, talking to others that have had the different diversions will most likely aid in you selecting which diversion you choose.

I can’t add to that voice since I didn’t have to go down that road, but since I do co-facilitate a support group here in Calgary, I can vouch for the helpfulness of speaking to others. From what I and others have gathered, it is a personal lifestyle choice. The two main things I seem to have come across in conversation is; the neobladder offers the chance to be closer to “natural” plumbing but of course has its set of challenges with continence, post op infections, and the possible need to self catheterize and being “on the clock” watching time to make sure that you go regularly. The outside pouch involves the use of external “equipment” but is a shorter surgery and for some, the handling of pouch and equipment changes proves to be easier. You can see and feel when the pouch is filling and can control bathroom breaks.

It will be a time of deep thought and personal consideration for your choices. As mentioned people here can help with their stories and answer questions. An in depth conversation with your surgeon may help as well. Asking him if he feels that one diversion over another may pose fewer risks or if they are about the same may also help with your choice. Hope that my comments help. Take care and best of luck. Let us know how it goes. (((((HUGS))))))

[Author]

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