Introduce yourself

[SimoneHU]

A great way to break the ice for the first time is to introduce yourself to the community with just a little bit of background - who you are, where you're from, what's your background and why you're here.

Try it - just leave a comment below...

[grandad]

Hi everyone I'm Grandad, been treated for non invasive bladder cancer, had tumour removed and had chemo in the bladder and am now on the five year check up list. Next one in March then I hope to move on to six month check ups.

I am so lucky compared to some once I got pass the fear stage I managed to turn my life round and go from the sat on my backside, over weight do nothing 68 year old, got back to my love of cycling now loosing weight slowly a hundred percent fitter, just a shame it took something like cancer to make me wake up.

I did find that when I was told what I had that no one wanted to talk about, I felt I needed to speak more I suppose out of my fear of having the the dreaded big c, my lovely wife was a big help, but did anyone else find that people don't want to talk about it or was just me ?

[pff-mlf43 in reply to grandad]

My husband has T1 hygrade bc the last 14 months and he isn't big on talking about it and of course I am the opposite, that's how I deal with things but as of last week, he had no cancer cells present but Dr. still want him to do 3 treatments of BCG and he has already had nine...I afraid of what that is doing to his bladder but he isn't big on asking questions...Good for you that you turned cancer into a positive and got your health back...

[pff-mlf43 in reply to pff-mlf43]

I forgot to mention we are from Texas and my husband goes to M D Anderson which is top rated cancer hospital ..

[JyrkiKasvi]

Greetings from Finland! This is my 13th year after the diagnosis. Veteran of countless BCG treatments, several TURBs, kidney removal and bladder removal. Still kicking and working!

Here to share my experiences, to learn and to spy on Fight Bladder Cancer in order to bring something similar to Finland one day.

[Phil444]

Hi everybody, was diagnosed in 2014, only found out after a n abnormal urine test at my Diabetes check up. So far no reoccurances since the tumour was removed. On BCG therapy and regular check cystoscopys, side effects from BCG not so goo but it's working.

[jabaroll in reply to Phil444]

Hi what is BCG therapy please.

[Phil444 in reply to jabaroll]

Hi bankroll, BIG is a live tuberculosis vaccine which the put into the bladder via a catheter. You keep it in f o r a couple of hours then go to the loo. The idea is it stimulates your immune system to attack any unusual cells in the bladder. I've had several sessions and it seems to work well. Side effects? A burning sensation when you pass urine and a bit of needing. Drink plenty of water and all should be ok after a day or two. Good luck and hope your treatment goes well.

[jabaroll in reply to Phil444]

Thanks. I havnt been offered this yet. But it's all early days yet.

[Wesandjc]

Hi I am Joan and husband Bill was diagnosed with bladder cancer in June 2015 .In January he had 44 radiation treatments and 8 chemo . Everything is finished now and we are waiting for blood work and CT scans.we live in Port Colborne and had treatment in St. Catharines On.

[tntiron73]

My name is Thomas Spencer. I was diagnosed with bladder cancer 7 years ago, had the tumor removed. Through prayers, I have been cancer free.

[jabaroll]

Hi, Im Barbs, i was found to have bladder cancer, (altho it was in my ureta) in dec 15. had my kidney and ureta removed, within days of it being found. even tho id been having blood in my wee for a few years, which the doctors didnt investagate. I was told i wouldnt be given chemo as it doesnt work on this type of cancer. I just have to have 3 monthly cystoscopys.

[brucieboy]

hi there y'all, i was diagnosed back in 2006, had my first op the day after the world cup final but wasn't treated that good at that particular hospital, in fact it was one of the health care that told me i had cancer, the surgeon and his buddies hadn't even bothered to tell me. When i challenged him about this all he said was 'welcome to the club, you got cancer, next patient' . Could tell some real horror stories about this hospital, and I work for the NHS! Anyway I needed a second op for which the hospital lost all my paperwork etc so went private, explained to the surgeon there  that i couldn't afford to keep paying out for check ups BCG etc and he transferred me onto his own list at my local NHS hospital where I have had excellent treatment. Another op and 3 yrs of BCG followed then every 6 months without fail a cystoscopy . Have only praise for the team that cares for me now , dread the 6 monthly checks but know that they are looking after me

[PappaJackSR]

I am Jack Hanson SR.  I live in Wenatchee WA and have had Bladder Cancer in 1992.  I had laser surgery and had a small tumor removed.  It did not invade the bladder wall. Have had checkups since.  Then in 2015 they found my prostate was enlarged and small slow growing cancer.  I told them to take it out. Then Sep 1,2015 they took my prostate out. have not had any other problem. 

[Bettybear]

Hi I am a daughter of a Mum who has bladder cancer. I  am seeking peoples experiences.  Mum will have to get further chemo and radiation therapy. I am hopeful that we can beat bladder cancer.

[jerrie32]

just diagnosed with bladder cancer while still in shock with my sister's stage 4 lung cancer. We are fifteen months apart. I have had the tumor removed and start treatments (6 weeks) in April. My urologist says they don't know how far it has grown into the wall. I have lots of questions when I see him next. I am a 67 years old grandmother. We are all trying to be positive about this.

[Jimmie1939 in reply to jerrie32]

My husband had this experience. We are living with treatment right now. The day before his regular checkup, he had blood in his urine. Up until that day, we thought he was in perfect health for an active 78 year old. The tests and cystoscopy happened in a flurry after that and he was diagnosed with high grade, invasive bladder cancer. His Urologist removed the 2.5 cm high grade tumor that had invaded the bladder wall almost immediately. They recommended chemo and removal of the bladder and prostate after the chemo (Cisplatin & Gemzar). They said that after taking the tumor, taking the chemotherapy before the total removal surgeries increased overall benefits by 12% as opposed to total surgeries and chemo at the end of that.

He had to have several tests and scans before chemo. One was a PET “all body” scan. They were looking for metastasis in other organs. Thankfully, he didn’t light up like a Christmas tree in any other place. Lungs are really important to check out. Their point is that after the tumor removal, getting that chemo all through your body to kill any errant cancer cells as quickly as possible is really best.

We were in shock, too. I wish our local oncology center or hospital had group classes to help caregivers and patients cope and make more informed decisions. Our Oncologist is the best. The nurses at the Infusion Center are wonderful, too. But...most of what I’ve learned about side effects and how to avoid them came from reading online.

We offer prayers for your recovery and a great team of cancer care givers. Unfortunately, you must be your own advocate. Also, get a trusted family member or friend to help you get what you need, too.

[Scared63]

Hi From what I've read I don't really fit the profile here, I am a 52 year old female who has never smoked or worked with heavy industry. 5 weeks ago I had a cystoscope which revealed a mass, which the doctor said had been there about 4 months and looked sinister. So far no one has mentioned cancer but they are all acting as if it is. I went in for TURBT operation last Monday and the doctor said he would do a chemo flush after. After the op the surgeon said he hadn't put the chemo in and just shrugged when we asked why. He said the mass had been there for a very long time and was very unusual, he asked if I had had a hysterectomy and said he would fast track me for an MRI and CT scan within 10 days but 8 days later no appointment. I am so frightened and have pain everywhere in my lower torso. Would love some support as I'm really struggling to stay positive.

[Chrissie270615 in reply to Scared63]

How is it all going now? Ive just joined the site, like you never smoked etc. Ive had a hysterectomy because of extensive endometriosis, had early cervical cancer at 22, but that was removed.

Hope you are getting the answers you need, it does seem difficult to get conversations going in the clinics.

[Scared63 in reply to Chrissie270615]

Hi Chrissie not good was meant to have surgery to remove bladder, womb, ovaries etc and just about everything else but they now think I have a secondary cancer in the spine, scan on Wednesday, if so there will be no surgery just palliative care. Body tells me it is in the back lots of pain and numbness. So not in the best place at the moment. Hope everything is good for you xx

[Rossi68 in reply to Scared63]

Will be thinking of you on Wednesday... It's hard not to worry

[Scared63 in reply to Rossi68]

Hi Chrissie well good news the cancer has not spread to my back. I am so relieved I was having major panic attacks. Am going for surgery this Tuesday I have asked for a mitrofanoff which they are going to do but it's the first one done in the hospital so I'm a little nervous but it seems a better alternative than a bag. Apparently 3-4 days in intensive care then 4 weeks in hospital but at least then I should be cancer free. Yippee

[Rossi68 in reply to Scared63]

That's good news...will be thinking of you

[Chrissie270615 in reply to Scared63]

Wish I could give you a big hug, will be thinking of you with my fingers crossed on Wednesday. I hope they get your pain under control too, xx

[Chrissie270615]

I found this site, joined and jumped right in with questions but I should have had a look round and said hi! I am a 57 woman, five kids between 39 and 22. I am a newly wed, ie got married (again) last June, oh and my name is Chrissie, hello all,

[Rossi68 in reply to Chrissie270615]

Hi Chrissie

[ilovecountrymusic]

Hello I am from Australia. I was diagnosed straight up with Stage 4 Bladder Cancer though the wall..I had my bladder removed have a stoma and the resultant bag..While it was so confronting in the early stages I know without the action taken I would have been long gone...I was misdiagnosed as I was given someone elses Xrays. So although I was urinating almost pure blood and within a short time huge clots they were not looking at cancer...However my journey from go to bladder removal was only a matter of weeks. I had been having some urinary urgency for a long time, no pain, but put that down to getting older and even laughed about that till the blood appeared. I have my six monthly checks and that is a bit scary till they give me my results...I do have accidents, but not many and no longer cry so that is a massive improvement. Last year I went on an overseas trip and due to good planning and wonderful support had an amazing time with no real issues ..Had to show my bag at the airport as it was picked up on a screen . But the customs officerswere lovely and if that happened again I would be prepared... My overnight bag actually burst on that long haul from Los Angeles to Brisbane but as it was night time the only person who knew about that was me..I am hoping to travel to the UK later this year .Thank you for the opportunity to tell a part of my little story..Yes there is life after a dreadful diagnosis..Good luck to all my fellow Bladder cancer mates xxxi i love Country Music

[ronno]

hi my name is ron and i just discovered this site,which looks great..5 years ago i was diagnosed with bladder cancer ( 3 tumors ),which were promptly removed,followed by 6 sessions of bcg..when i went for my 2nd cystectomy,they found 3 more tumors,which were removed and again 6 more treatments of bcg..to make a long story short,i had 2 more operations to remove tumors..total 4 operations,12 bcg's and i am glad to state that i am 1 year clear of cancer finally..dont ever give up hope because there is...KEEP FIGHTING AND STAY POSITIVE,BECAUSE CANCER CAN BE BEATEN

THANK YOU FOR THIS SITE...

[Iamwoman53]

I am new to this community! My name is Marilyn. I was diagnosed with bladder cancer in August of 2012 and had my bladder removed on Feb. 1st. 2013. I chose the Indiana Pouch.

[come-unto_Me]

I'm a 73 year old male, living in Belfast Northern Ireland, being treated in the Belfast Cancer Center at the Belfast City Hospital, the medical team are among the best in the UK and Ireland, diagnosed with aggressive bladder cancer last November, operation was 30th December 2015, they were not able to remove all the tumor, biopsy showed that it had gone through the bladder wall into the muscle and as a result there was secondaries on my lungs, they treated the bladder first with Radiotherapy and when that was done they turned their attention to the lungs with Chemotherapy which ended 6 weeks ago, I am booked for a chest, abdomen and pelvic scan next Monday 26th Oct. Praying for a good result. I still have a catheter in since surgery, it has its own problems and I was told that I have very complex issues with the bladder, hope to have this better explained when I see the Oncologist Consultant this coming Thursday. Always be positive about your cancer, don't let fear control your life, I have a strong faith in Jesus Christ and that gaves me peace every day and I am blessed with great family support, my wife is great she is my main carer. I hope and pray you all get good results.

[64Andy]

Hi I am Andy I live in Walsall and was diagnosed with Bladder cancer about in 2013.have had several operations to remove the tumours each time they have come back and have had chemo in the bladder had a cystoscopy in October and no new tumours found so back in 6 months fingers crossed in the mean time I will be having some relaxation treatment at out palliative care centre with the macmillan team they are so good

[mysmugcat]

Hi, just a quick thing for now. I am supporting someone who has bladder cancer. It has all happened so quickly.

[Jimmie1939 in reply to mysmugcat]

I am also working to help my husband through this high grade invasive cancer diagnosis. After all the tests and biopsies, the tumor was removed. Chemotherapy was next. We have one more cycle of Cisplatin and Gemzar and then the bladder & prostate removals.

We were in shock with the diagnosis but are doing the best we can to be positive. My job is to supply emotional support and find ways to help with diet and coping with side effects.

[westseajoe in reply to mysmugcat]

even tho is has a recurrence rate that is a bit high, it is somewhat easy to treat. I had 2 operations for mine, and mine was extensive but not thru the walls. It has been almost 6 yrs of bladder inspections and BCG treatments. BCG is the gold standard. Does not give a person TB as it's weakened, however for that point on, they will test positive for TB in the TB skin test. The infusions of BCG as well as the bladder inspections, altho a bit uncomfortable for some, takes about 3 minutes tops! However, holding the BCG for the next 2 hours can be challenging. First time urinating afterwards can feel like peeing glass shards but gets better real fast. However, the down side is they will want to stick close to home for the rest of the day. Best to also eat a very healthy diet, vitamins and supplements, stay away from sugars and try to include 1. flounder 2. artichokes 3. bok choy 4. tomato sauce simmered in olive oil as they are cancer fighters. I am 71 and just had final bladder inspection, now only have 3 more BCG infusions and will be done- except for annual bladder inspection....best to luck to you

[Bladderadder]

Hi everyone,

My mother has just been diagnosed with bladder cancer but is having to wait four weeks for TURBT. I am worried as this seems a long time since initial diagnosis...is this the usual waiting time?

[westseajoe in reply to Bladderadder]

i suspect that bladder cancer is typically slow growing....my cousin waited 3 weeks and I waited 2.....problem for me was with all that time, i became very anxious. Since I had a very soft lap cat who liked being petted, i remembered how it felt to pet him and imagined petting him whenever i got nervous. First one is hardest, after that I begins to become more routine as you know what to expect