Share your story in our online journal space.
Hi everyone
hope everyone is doing well on our ‘journeys’
are there some female bladder cancer ladies out there? And where are you at what treatment plan are you on? Would be good to hear
Hello Jennifer66,
I've noticed that no one has shared their experience with Bladder Cancer yet.
For now I am sending you a link which provides some information about Bladder Cancer, I hope it is of help.
Warm regards
Susana
Hi Susana
thank you for your reply, very overwhelming and so much information, more information than I have had. I don’t have many options other than major bladder surgery, which I’m confident I won’t be taking, I am seeing a Professor who had success with chemotherapy trials in a week, and looks like l might be suitable, same procedure as BCG which I had 12 treatments but no longer an option.
Hi Jennifer66,
Yes you are right, a lot of information to assimilate, I am glad to hear that you have the opportunity to explore other treatment options. I wish you all the best with that 🙂
In the meantime, if you have any questions about your diagnosis, treatment or symptoms, please call our information and support line on 131120 (Monday to Fridays between 9-5pm).
Warm regards
Susana
My mum had bladder cancer. She had an overactive bladder and they diagnosed it in the lining of the bladder, eventually. She almost got missed because the gynecologist was going to giver Botox injections to calm the bladder down, instead of looking for cancer. It was upon mum's insistence that something was wrong, that they checked for cancer.
She first had BCG treatment for 6 weeks (1 per week). Then 6 week wait until cystoscopy which gave her the all clear. Then 6 months later they discovered some more "spots". So they treated her with chemotherapy (internally - so there's no side effects). Same deal. Six weeks (1 per week). Then 6 week wait until cystoscopy. She finally got the all clear again. She's been on "preventative" chemo (1 per month) for 12 months. Six-month checkup found she was ok. Has 1 more chemo then another cystoscopy a month after that to see if it's all okay.
I think it all depends on where it is in the bladder (lining, muscle) as to what success you have. Hope this helps.
Hi David
sounds like your mum and I are on similar journey
I was very fortunate as when I first saw gynaecologist I was sent to urologist.
I have been on same treatment plan two rounds of 6 week BCG immunotherapy, 12 treatments, my cancer is only in bladder but I had cancer at edge of right ureter so have had a stent, after my last cystoscopy surgery stent taken out, I am seeing a professor at end of month and will start chemo, but this will all depend on another cystoscopy to see if my bladder ‘is suitable’ as I had cancer in ureter and I still have a tiny tumour on edge of lining I am high grade and the preferred option by doctors is bladder removal, a path I’m not looking at, hopefully the chemo will be suitable first
thanks for your kind information and good wishes to your mum so good to hear about another female
Hi Susana
thanks again for your reply
I am not sick in any way, other than I get tired in the afternoon, and a reason I would like not to have anymore treatments
however I am high grade with two options chemo or preferred option bladder removal, at this stage I hope the cystoscopy gives the go ahead for chemo
👌🏻
Thanks. I know information can sometimes help with the endless questions running around in your head. That's half the battle with my mum. She imagines or foresees situations which may never arise. The best antidote is information. Unfortunately, waiting on test results can be hard. I know mum's urologist was quite alarming to begin with, mentioning bladder removal. But fortunately, it hasn't been required because the BCG and chemo treatments were successful. According to mum's oncologist, chemo is more effective than BCG treatment, but they don't offer it to begin with for some reason. All I know is each situation is unique.
I wish you all the best for your diagnosis.
Hi David
major surgery with bladder removal is my urologist preferred option now, however not a path I want to take. Chemo is only the first choice for muscle invasive bladder cancer, BCG immunotherapy is definitely right way to go for non invasive, it worked 99% for me and my team were so happy that it had worked so well for my ureter. I have no pain and are well and more than happy to do nothing, but will do the chemo, more for my husband
questions!! I never know what to ask
thanks for kind words and good wishes to mum