One week on from TURBT.........Questions in my mind

Hi . It is hard waiting for results and our minds goes in to overdrive. From what you say, it does suggest it has gone beyond the lining, but if still confined to the bladder it should be able to be treated. Your experience sounds similar to mine as I was in or 4 days. If it is any reassurance to you, I am now off for a game of golf. Best wishes.

Dear Plantaholic, sorry to hear of the rough time you have had and the worry the comments have left you with. Just please be assured lots of us out here are thinking of you. And at least by keeping you in they were able to offer irrigation and pain management and keep an eye on you. My husband got sent home in a terrible state years ago despite begging to stay in as he was in so much pain and losing a lot of blood into the catheter bag. So hopefully the care has improved in many ways which you will benefit from.

Meanwhile don't overdo it as you have got a wound to heal even if you can't see it, and make what you do do enjoyable for yourself-good food, pleasant activities, positive company if you feel like company. Your body mind and soul deserve nothing less.

Very best,

Denby

Hi plantaholic

im new to the forum,but just like you I had a turbt I’m May 2015 I also was told surgery would be just over 30 minutes I was in theatre almost 3 hours,the cancer had spread to the muscle around my bladder,I was in hospital for 5 days after expecting to be in just overnight.

they originally said I would lose my bladder but after a fight with the surgeons it was agreed that I would  have 12 rounds of chemotherapy,and see how the tumour was as they were unable to remove it due to how it had spread.

on my last chemotherapy session they told me that they would like to offer me radiotherapy for a month and 4 more sessions of Chemotherapy and hopefully it would save my bladder,I can tell you I felt like I had won the lottery another option before having to have my bladder removed.... the radiotherapy was not pleasant made me so tired ,emotional and upset tummy but worth it in the end it worked It shrunk the tumour and I still have my bladder.(a little weaker than before.. but still there)

i have check ups now ever 3 months ,hopefully moving to 6 months in October
Stay strong and positive and you will get there 

Thanks, Mrs Jc. Inspirational although sounds tough. We're you told straight after surgery that the tumour had spread? You are one strong lady. Best wishes for the future

Good morning 

no i wasn’t told anything other than it was cancer and serious. it was 2 weeks later my GP gave me the news also that they had been unable to remove any if the tumour due to the size of it 

I first visited my GP in the January where they told me it was just an infection... needless to say they messed up it was when I was really in so much pain and almost unable to walk that I was referred and within 2 weeks I was in surgery

it will get better but you will have some very dark days x

Hello and may I welcome you to the community and our corner of it. Thank you for sharing your story. I am sure your experience will be of help and reassurance to others. Best wishes.

Hi Mrs Jc, thank you so much for sharing your experience, it has been very encouraging for my husband and I to know you got the doctors to agree to a course of treatment other than immediate bladder removal.

What CAN we DO to educate these GPs to take patients seriously? presumably they gave you antibiotics in the January, did they even test your pee for the supposed infection? Even if you had an infection they should have suspected something if antibiotics did not clear up the pain promptly.

I have a hunch that although traditionally bladder cancer patients have been smokers or workers in certain industries that used harmful chemicals, other things like multiple medications or environmental causes [agricutural spray drift, electromagnetic pollution etc] could be causing some cases. Someone scientific should be assessing this. If I'm right, GPs will have to stop dismissing the possibility of bladder cancer in anyone who isn't in the traditional cause groups. [eg my husband].

Very best wishes,

Denby

While we sometimes moan about the GPs I went to mine on the 5th March was seen by a student doctor but the GP popped in and advised him. He sent me for a  flexi on the 11th and they discovered the bladder cancer.

If I succeed in beating it I have to thank him for being on the ball.

My GP was on the money when I saw her, I was referred immediately. However, I'm aware that women in particular are often diagnosed late due to being fobbed off by GPs who prescribe antibiotics for UTIs. The bladder cancer charities are campaigning to raise awareness but it's a long haul.

I went to the Royal Marsden for a second opinion where I was quizzed by a researcher about my background. He was investigating possible causes of bladder cancer other than smoking or working with chemicals. He noted that I'd been on the road for 40 years with my career and added diesel particulates to his list. I told him that I'd worked in the pub industry for that period, mostly in smoky ones, and that six of my cohort of twenty regional managers had been dignosed with cancer, three of us with bladder cancer.

When you consider the rapid growth in cancer diagnoses, I suspect there must be something in the environment that is partly responsible together with us living longer so more susceptible to disease.

CB

Re other causes, I think not totally improbable, I've heard a suggestion that sitting long hours on a metal-based/metal framed seat could create electrical/magnetic force fields that aren't very good for the sitter. Just thinking most vehicle seats have much more metal than your typical home sofa which is mostly wood frame inside. Don't know how much of your work time was literally on the road. Suspect a lot of cases of cancer come about because of a combination of harmful factors, it depends too on how anti-oxidant rich your diet and supplement intake is, as the body will nip most cancer cells in the bud if it has the nutritional recources to do so. If you were also drinking alcohol fairly regularly in that job it will have used up a good deal of the anti-oxidants you ate, possibly leaving you short.

Anyway we're all here involved with bladder cancer now, here's to everyone's best recovery and to the researchers' work. Anyone know whether the research funding is in proportion to BC being the 7th most common...?

Denby