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[SimoneHU]

Hi everyone! almost 50 followers here so about time to kick start conversations. Please feel free to post about your experiences here: healthunlocked.com/write/fi...

or leave a comment below

[elenarosa]

i have just joined your group and am eager to have someone, other than the doctor, to write to. i had low risk bladder cancer, got the one shot of chemo and am through with my 3-month check-ups at the end of feb., 2016 (if all goes well). since the surgery to take out the tumor, i have a worsening problem with incontinence and wonder if it is from the surgery or chemo. i had problems before the surgery with incontinence, but not as bad as it is now.

has anyone had this experience what did you do about it?

[heidivodka in reply to elenarosa]

Hi hun, I too had a low grade bc in Feb 2014 which was removed and one shot of chemo. Cancer was back in May 2015 and another tumor removed I too have found that the urgency to pee is much more severe and I wear a pad if you go to the bladder and bowel cancer page you can get a card called "just can't wait" which you can show in pubs cafes etc. stating that you have a medical condition and need to use the loo. Everyone has been brilliant about me using it. it also shows the Radar Key sign which means you can get a key (around £4 from most local authorities) which can be used in any disabled toilet I have found this invaluable especially in crowded places where us ladies usually have to queue, as the disabled toilet rarely has a waiting list. I spoke to my surgeon and he did say that everytime you go into the bladder it can weaken some of the muscles He advised that if it got to be unbearable then I could have a further op to tape it up. Hope you stay healthy but see your GP if you are unsure or ask the Urologist Dept at your local hospital

[elenarosa in reply to heidivodka]

thank you. my urologist told me that if i got past a year of no signs of cancer, i would probably be ok. but i guess that's not necessarily true. he also said that 50% of the cancers come back. i'm in my 12th month.

but who knows. today i'm going to pelvic rehabilitation therapy for the first time. my urol has suggested the mesh, but i have seen many advertisements for lawyers who represent people who've had the mesh. they mention bladder infections. so now i go every hour. i guess i am weakening my muscles. time for some changes.

[Kickedit]

Dear readers I would like to share my story with you all. I had bladder cancer in 2004 and words cannot describe the way I felt, as you all know, shock was the initial feeling then all the rest followed. I was admitted to Pinderfields West Yorkshire for my opp and received gemcitabine and cisplatin cemo (hope I spell these right) as you can imagine I waited with trepidation for my results. They came back clear and as you can see I'm a 12 year survivor. I would like to wish you all best wishes with your journey, and be positive.

[Liz2597]

Hi it is interesting reading all your stories and how treatment affected you and I wish you all well . I was diagnosed with bladder cancer 11wks ago am awaiting 2nd op and bcg treatment

[jabaroll]

I was told after my kidney and ureta removal that I wouldn't be offered chemo as for my kind of cancer, it wouldn't work. Is this just different oncologist views or am I missing something. Apparently there are big medical trials going on to prove this. I'm very worried as I keep having bladder infections, so have almost convinced myself that the cancer has come back. 

[Scared63]

Hi everyone, met with my surgeon yesterday to get results of my TURBT and CT scan and was told my cancer is stage 3 and aggressive. Apparently my cancer won't respond to chemo and he did not recommend radiotherapy as it would not be as effective and can make surgery difficult later on . He wants to do a total bladder removal, but I am not a candidate for a neo bladder due to where the cancer is. The surgeon said they usually do bladder removal in younger people, I'm 52. Anyone else have similar experience. I totally freaked out when he suggested a bag so then he said a recto sigma may be a possibility, had not heard of this before anyone had any experience?

[AGNES62-MCG]

hi everyone my name is agnes i had my bowel & bladder removed on the 8th of march 2016 still trying to come to terms with it .i go back to hospital in 6weeks time for a check-up see how everything going but i do feel low at times as it was a big shock to me and my family.i am only 54yrs old and was totally to a back when i got told i had cancer.

[kareleigh]

hi I'm new here. My husband was diagnosed with prostate cancer and bladder cancer at the same time, but not related. Its very rare to have this. He had a robotic prostectomy in September 15th and they said they couldn't see any cancer in the bladder, the cancer was removed when he had a biopsy of what they could see. He is doing very well in recovering from his op, but has had a bladder infection for a few weeks now and 2 lots of antibiotics have not cleared it. He is very tired and has slight burning when urinating but other than that he seems ok. He is 58 years old on friday. Has anyone else experienced this? He is due to see urologist next monday to have a look in the bladder with a catheter and camera to see what is going on since surgery. I feel slightly concerned that the cancer might be present again, but hoping its not of course!! Tiredness was one of the signs he had prior to his diagnosis of prostate and bladder cancer. Its extreme tiredness.

Any answers please.

Thanks.

Kareleigh

[westseajoe in reply to kareleigh]

i just turned 71 and had/have BC since diagnosed in 2012....alot of it but not thru the muscle tissue- had first op then a second 'look see' and they removed a bit more they had missed. Followed by bcg infusions and bladder inspections. Had been told by surgeon that if the BC were to spread elsewhere it would still be bladder cancer. After next bladder inspection end of this month, my final series of BCG. After that assuming it is all clear as it has been, then an inspection once a year. Hope his inspection with cath and camera went ok. Would check with GP to see other reasons for the fatigue- depression? Check his diet- and to see if his blood sugars are balanced- if sugars are low he may need to go on hypoglycemic diet.

[poppadew]

What is BCG. And is it possible my bladder cancer could have resulted from exposure to Agent Orange in Vietnam???

[westseajoe]

bcg is a weakened form of TB- it is the gold standard in treatments- it is infused into the bladder and held there 2 hours before eliminating while seated on toilet to prevent splashing- then add cup of bleach and let stand 20 mins before flushing.

[Bladdercancerman]

4 years on

Bladdercancerman

After my Bladder Cancer diagnosis, along with CIS and having had 3 years of BCG, following two ops to remove tumor, it was nothing compared to how friends and relatives reacted.

To say I was ostracized is an understatement. After informing those who knew me, the emails and telephone calls stopped. It was though I had an infectious disease. People did not know how to react or know what to say. A few have now come around but it has been difficult.

My inspiration came from reading about Lady Archer, who herself had been diagnosed with advanced Bladder Cancer and was treated and she now continues with her life as normal. She is truly an inspiration.

All those with this condition go from one cystoscopy to the next. The secret is not to tread water between check-ups, get on with your life. There are many of us in the same boat, lets all keep rowing against this tide; we call cancer.

Good luck everyone.