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Just joined, am a BC survivor, 2 years since I had my bladder out, along with prostate. Use Coloplast bags as they work better for me. Had few leaks at work but no more than 2x in past 2 years. Was off work 10 months and it was tough going back. Anyone else have pains still because I sure do. Operation was January 2013 in Calgary. Was in after the operation for 15 days then let out, day I left my incission split open and became infected, lots of fun. So far so good, but I am aware of the stats, so at the 5 year mark, in another 30 months, I have about a 50/50 chance of staying cancer free and survival. Been having some kidney issues, seems to block up at times and the urine output drops to about half of normal. Just had a renal duritic ct scan in Edmonton, waiting on results. I would like to discuss any issues others are having. I am a confirmed dye in the wool atheist, so please no prayers.
Hi Northerner! Welcome to the site that no one wishes they belonged to. I haven’t had to remove my bladder but have had my share of adventures as well. You will hear from others soon I know and hopefully be able to put some of their suggestions to good use. As for the prayers – no worry, we respect everyone’s beliefs, all are welcome no matter what their background is.
Hi Northerner! Welcome. My docs promised me that I die from my heart and not from my cancers (I have 2). I almost died from my heart recently when I did 6 cycles of chemo for lymphoma. My heart was racing at about 200 beats/min with heart drugs, but that was always on one particular day in each cycle. So we figured out how to overcome this in the last two cycles.
One good thing about being without a bladder (besides you being cancer free) is that you don’t have to visit a urologist every couple of months. Or do you still have regular visits with a uro? I also have to visit my uro for cysto and hematologist every 3 months (and receive a maintenance chemo) for 2 years. But the good thing is we are alive and that means a lot for our families.
I am also an atheist, always was, always will be. I believe in evolution, no doubt about it. By the way, cancer is an evolution of cells by random mutations. When you put the cancer cells in harsh environments (chemos), they mutate and some of them become drug resistant. That’s why it’s so difficult to cure it.
About 50/50 chance of cancer returning, if it ever happens by that time there will be much better drugs for every cancer. Particularly I have in mind the checkpoint inhibitors and their combinations. They have already shown a promise for bladder cancer (and a bunch of other cancers). (((Hugs)))
A nice reply, makes me glad I had cancer that would not be cured or controlled by BCG, chemo, or radiation, straight to the RC after 2 Turbs. Well so far BCG. I read about people in hospital only 7 days & I wonder why I was in 15 days, but maybe the prostate removal and the stroke that wasn’t a stroke caused some delays. Then I couldn’t return to work until first of September. I was a carpenter for decades so I always thought I was in good shape, strong like fox, smart like ox, or is it the other way? LOL! My wife & family helped me to keep my feces adhering together in a cohesive manner. Hope to retire 2018. June 2013, wife & I went on our first trip to Europe for 28 days, & it helped me to recover back closer to my normal self. Have pains everyday still, hope one day to be pain free. The weekly changing of stoma bags is routine now; do it while I shower. Worst part is having to shave hair around stoma to let bag flange to stick on skin. I am a bearded man so having to shave my gut is a very new and weird experience.
Hi Northener
Sounds like you’re doing ok. Plan on staying around for another 100 years. Oh ya welcome to this site.Hi Northener, why did you choose the ileal conduit instead of a neo bladder? I heard that they can do the neo bladder after the ileal conduit. I understand that neo bladder is a very complex procedure.
Hi Northerner,
My husband was diagnosed with aggressive bladder cancer April 2011, surgery May 2011 followed by chemo. He has a neo bladder and, at the 4 year mark, is still cancer free. He too was fit as a fiddle prior to all this – never had surgery or hospitalized in his life!Soon after surgery he developed pain throughout his perineal area (pelvic floor). His euro/surgeon referred him to a pain clinic. Once seen, he was placed on meds….permanent state of affairs (meds) but it has allowed him to resume most of his regular activities (he’s retired)….cycling, going to the gym, travelingg etc.
Pain no longer rules his life.Kind regards,
IevaWelcome….I am happy to see someone new to the site, and someone that speaks so openly about long term post surgery concerns and issues. Thanks Wishing you well.
Hi Northerner, welcome to the site. How did the renal duritic ct scan go? or have you received the results yet?
My RC is the 25th of this month and I’m thankfully, thinking past it now. Although, I might just stay in the moment
since I’ve been getting caught up and am reading of complications.
On the matter of hospital stay time, I’ve been told 7 – 10 day minimum and only once you’re ready.
I hope all goes well with your kidneys.
Please keep us postedSue
hi Northerner
so great to see another Yellowknifer who worked near arsenic. My husband will have RC in a month or two, and I am sure he would be keen to actually talk in person about it. Not sure if it is ok with you or if a nono on this network? Hope you respond any way you want. thanks for all the information you passed along already. Wife and caregiver.Hi suzykskier,
Helping out in any way we can is what this site is all about. By all means, those having experienced similar situations are encouraged to share their knowledge provided they are comfortable in doing so.
In the meantime, there is another person in your area looking for similar advice and I’m not sure if you are the wife and caregiver but if so, please don’t hesitate call the number at the top of this page for the contact info you need. The staff at BCC are always there to help.
Also, the Past President of BCC is Jack Moon who is an active support member on this site and very knowledgeable. I expect Jack would not mind if you sent him private message of if you contacted him through the contact number 1+ 866.674.8889.
Wish you and you husband the very best in your journey…please keep in touch.
Gad Bless,
Rick
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