Neobladders in the UK

Hello Sarah,
I am relatively new to this site and have only just picked up your thread. I had a neobladder sited in August of this year at Stepping Hill Hospital in Stockport following a cystectomy, hysterectomy and removal of lymph nodes. The surgery was fine but I was very ill post op with severe infections. My concern was that there was very little advice available post op. I was given a sheet from another local hospital (Christies in Manchester) and found stuff on the internet - notably from Bristol! but as I was the 3rd woman to have this operation at this hospital their info was severely lacking! I am seen regularly by my consultant and will receive MRI scans and cystoscopies for quite a while yet to check there is no recurrence of the cancer. Histology reports showed the surgeons had removed it all but I suppose there could still be a chance of mets. I have gradually built up my neobladder volume to 450-500ml (a vast improvement on my former bladder which held 375ml!) but am not able to void naturally yet so need to self catheterise. I do not see this as a major issue. I am hoping to return to work next week although only on a part time basis for now.

Hi Sarah,

I am lucky as Claire, I have a private medical insurance through my husband's job.
I am a 46 year old French female living in UK. Since we moved to UK 10 years ago, I have always said if there is any severe health problem within my family (I have 3 children 11, 14 and 16) I want to move back to France. My trust in the English health system was very limited and in fact I was wrong.
I was diagnosed by my gynaecologist mid Nov 2006 during a routine examination for a potential hysterectomy for huge fibroids. The following week I have met my urologist and undergone my first TURB. The diagnosis was T1 grade 2. I was totally devastated (I work in oncology for an international pharmaceutical company). For a month I was deeper and deeper: statistically it was so unfair, I am a woman under 60 and non-smoker! I have started an anti-depressant therapy just after my second TURB mid Dec 2006. Due to the result of the TURB (no recurrence) and the treatment, I have spent a quite good Xmas. I was much more positive.
During January and February, I have had 6 BCG cycles. I was able to go back to work and to go skiing after the 4th one. My only side effect was an extreme fatigue.
At the end of Feb, I have underwent a total hysterectomy (they have removed 2 pounds of fibroids and found an endometriosis as well!). I am recovering very well and I am under oral HRT (no side effecs apart nausea while having breakfast).
Last week I have had my first cystoscopy still with the same urologist (he knows me very well now and it is very supportive). I am still waiting for the biopsy results there was nothing macroscopically. I am re-starting BCG maintenance next week (3 weekly cycles) while I am still in sickness leave.
People never write about how they cope with their work. I am planning to come back to work as soon as possible it is part of my recovery.
I have met very nice, professional, good listener and cheerful people (specialist and nurses). I am not feeling like a "piece of meat".
I have started to go to the Forum when I was diagnosed however I was not able to participate I was too bad and did not want to share my emotional state with others even my parents.
When I read your comments or Sarah's I am feeling so close to you. I am experiencing exactly the same emotions regarding my children.
I definitely feel less lonely, thank you.
Best regards, Chantal

PS: The good thing of this story is the fact I have lost nearly 2 stones (12 kg) and nearly 2 sizes (14 to 10), it is nearly Spring time
and the shops are full of nice clothes!

Hi Claire

I have read your story with great empathy over the last fews months - I think you are incredibly gutsy and courageous and I'm with you girl! I intend to see my youngest graduate (he's 13 now) and I will cry at my eldest's wedding....
I hated seeing the uro-oncologist nurse coming on to the ward when I was recovering from surgery. She as a kind and lovely person, but she approached me every time with a serious and concerned face....I eventually asked her not to visit until I asked for her as she reminded me what was wrong with me. She took it very well, bless her.
This foul and filthsome beast that is bladder cancer will not deprive me of the precious things in my life, and like you I will do everything I can physically and spiritually to endure, with God's help.
I hope that you have many happy years left to watch your little boy become a man.
Whereabouts in the UK are you Claire?
Kind regards
Sarah

Hi Sarah
I am in the Uk too but in the lucky position of having private medical insurance through my job.I do get CAT scans at every check point although they did say at the last check up it would just be bloods nd a chest X ray next time.
My consultant was equally blunt and said I had a 40% chance of being well and cancer free at two years despite very aggressive treatment.Every little ache and pain is a reacurrance and its hard to live with those statistics but we have to try otherwise it becomes pointless and we have lost the battle.
I was diagnosed with stage 3a aggressive cancer and had a RC resulting in a urostomy in August followed by aggressive chemotherapy.I have two daughters and a little boy who willbe four next month and I am determined to beat this for them the thought of leaving them is in comprehensable.
The last 9 months since diagnosis have been life changing I am a different
person and have different values I am probably nicer to know but I still would not wish this on my worst enemy but this is my life and I have to fight to stay positive .
There seems to be an increasing number of women in our sort of age group being diagnosed which is a worry but please feel free to PM me if you think I can help.
Love Claire

We're all a bit guilty of paranoia but, yes, your brutally honest doctor would have put the willies up me too! Hopefully when you get beyond the first year you'll feel a bit more relaxed. Not that you shouldn't anyway. What I seem to have more than anything after this op is a series of dry skin issues. I'm not sure its related at all but I attribute almost anything to the cystectomy these days. Im very happy and positive as a person in spite of everything thats happened but I'm also aware that my body is currently out of balance and as such Im getting the odd minor complaint.

I'm not sure where I stand on statistics. I feel pretty ambivalent about them. After the years of searching the web for BC info, it became pretty clear that you can find any statistic you like to back up how you want to feel about your situation. I'm not sure how useful it is to have figure like percentages going through your head. A friend of mine here in Bristol was given a one percent chance of surviving small cell over a 5 year period which understandably sent her into a spiral of depression. She's still here and a permanent fixture at the local pub 15 years later because she climbed out of the fug she got into and refused to be a statistic. She was fortunate in having a doctor who actually said to her "I don't want you to be a statistic.". She was diagnosed 3 months after me. I guess they are useful as a guide.

Anyway, Im rambling now! You keep being positive!

Tim

Hi Tim

Thanks for the reply - looks like the follow up is pretty similar across regions, I'm in Buckinghamshire.
I must admit the tingling across my outer thighs has bothered me, but it's so hard not to take every sniff and minor ache incredibly seriously. I have mentioned it to my GP who reassured me, but because it's not possible for him, or anyone to crystal ball gaze about what might be happening/changing without a whole battery of tests I am unwilling to undertake for such minor symptoms, I have sort of put up with it. I am grateful for this site and all the information that's here, otherwise I think I'd be in his surgery every week!
My consultant is a very brutally honest and factual chap, who told me right at the outset there was a 40-60% chance of micromets at the stage of diagnosis. He also told me I had a 50% chance of making it through the first year without recurrance. I have to say, I haven't found those stats very encouraging when trying to go through this first 10 months without paranoia.
It's very hard to not share this with family, as I don't want them to worry with me over all the blips. If the blips are big enough they will make themselves known!!
Anyway, hope to keep chugging away being positive!
Sarah