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Neobladders in the UK
Hi everyone
I have been a “lurker” here for quite some time, but thought it was time I expressed my gratitude to the wonderful people who run and contribute to this site.
The reason I have finally posted is that I would welcome some feedback from other people who have had their treatment in the UK.
Some background first…
I am female and was 49 and premenopausal when I was diagnosed with T2 G3 and CIS. I had a RC with neobladder in July 2006. I had a phenomenal GP, and a superb surgeon, and can thoroughly recommend the British NHS for acute care. However, I was discharged with absolutely no guidance on what happened next, what to expect, how to look after my neobladder etc etc, and without any advice on hormone replacement therapy. When I woke up every night two weeks post surgical menopause drenched in sweat and miserable the (male) urologist insisted it couldn’t be hormonally related….if it hadn’t been for this site and the huge resource it has become to me, I would have been at my GP’s office every week. With his help I got HRT and very sympathetic support.
I suppose that the luxury of still being here ten months later has allowed me to start reflecting on what has happened and to start to feel sorry for myself!!
Seriously though, the changes that this has brought have been so far reaching that I am beginning to marvel that the hospital let me out on my own, with no advice or accessible advice resource other then my GP, who although wonderful has no experience of neobladders and how to advise me on what I should be doing and what to expect.
My follow up appointments at the urology dept of the hospital where I was treated have been with a different registrar each time, and I have not yet seen the surgeon who operated on me, not even while I was in hospital! The only time I saw him was whilst I was in the OR having my cystogram 6 weeks post op, and he was passing through on his way back from theatre. He patted my foot and told me I now had the bladder of a two year old boy (?), I think he meant girl…and I was to discover that potty training was a solo effort, undertaken with the sterling advice I found on this site. I shudder to think what might have happened if I hadn’t had blcwebcafe….
To end on a high note, I am immensely grateful for the expertise of the doctors and surgeons who cared for me, and I thank God every day for my life. I have two wonderful boys aged 13 and 16 and a very supportive husband, who has coped admirably with all the huge changes this has inflicted on him.
I am in no doubt that I must find the positive in every aspect of what remains to me, and I hope to be able to do this in good health for as long as is possible.
It just seems that my experience shows up the dichotomy between follow up care and treatment in the US and the UK – what do you think?Sarah
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17 Replies
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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, ChantalPS: 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
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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!
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Hey sarah
I had a 4 mo IVU, no cat scan mentioned and I have flexi coming up in June and an ultrasound in July. I have bloods taken for the kidney function, PSA (I had a prostate tumour too) and bicarbs for acidosis. I have to admit it seems a trifle arbitrary and also that its hard to keep up!! A chest xray has been mentioned this year but I have no date yet. I also have numbness down my groin on the left hand side but Im pretty sure its improving. I think it’s where the nodes came out too. I’ll try and get a more accurate picture at some point. I need to see my medical records also at some point – although after 14 years they are mightily dense! Where are you BTW?All the best
Tim
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Hi Tim
You had your neo in October last year? Out of interest can you tell me what your monitoring has been so far?
I had a cystogram 6 weeks post op, then IVU at 6 months with blood profiles (bone, liver, kidney function) my GP followed up with C-reactive protein and ESR at around 7 months as I have had back pain. All has looked OK so far.
My next routine checks are pelvic ultrasoound, urine cytology and a flexible cystoscopy at 1 year, but no mention of CAT scan.
I’m also beginning to suspect I may have some nerve impingement in the groin (possibly where the lymph nodes were removed) as I have mild intermittent outer thigh neuralgia related to exercise. (I started running again around Christmas and it began then).
It would help me to know what other health districts do, as I suspect the absence of CAT scan may be funding related.
Kind regards
Sarah -
Hey Sarah
Yes, I think I lucked out being in Bristol. In fact my BC showed itself within 2 years of moving here 14 years ago. Maybe it was fate! It does have a good reputation. My surgeon was reputed to be very good. But I’ve yet to hear one described by colleagues as “very bad”! He seems to have done a great job though so far. You have a right to this level of treatment too. If you haven’t already you should start making a nuisance of yourself. I know I did. As I mentioned in another thread, writing things down gets things done far better than talking. A letter HAS to be answered. My sis is a lawyer so I know this. If I wasn’t happy with my treatment she encouraged me to drive to the hopsital and hand-deliver letters! I only did it once but it did work. :)The bristol cancer help centre (now Penny Brohn Cancer Care) is also a fantastic resource here in Bristol. They have a website and a helpline. They are a great organisation.
And thankyou for your kind remarks. I only wish I had more time to be here. My life’s getting back to normal again which is bringing it’s own weirdnesses! There’s a kind of post crisis melancholy!
All the best to you
Tim
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Sorry for some reason my comment appeared on the the wrong thread. I was commenting about the picture Joe posted of the neighbors fueding. I have not had that surgery either, Sarah but can certainly appreciate how much more difficult the post op period is with no follow through or discussion from your medical team. There are some terrific knowleagable people on this website that can and are being of help.
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Hi both Wendy and Tim
Thank you both for the incredible help you have been, although I’ve only just posted I have read your supportive words to other users since finding this site last June.
Well as far as being a mentor is concerned, I only have my experience to share, but I would willingly do that.Tim – you are lucky to be in Bristol, I hear very good things about the hospitals there. I envy you the rapport you have with your team. Maybe if I last out as long as I hope I may have the same eventually! It’s just the non-continuity of care that worries me, and the fact that no-one takes the time to tell you what the next round of checks will be or what they are monitoring. I haven’t had either bicarbonates or B12 checked yet. I do have an upcoming appointment for a pelvic and bladder ultrasound, and the letter asks me to drink one and a half pints of still liquid an hour before my appointment and not to empty my bladder until they have done the scan…….!!!!
I have been taking the most incredible amount of care keeping my neobladder size to around 300-350cc. I really really hope to be using it for quite a while and I know I don’t want the “floppy bag” that leads to hypercontinence in some. It made me smile to imagine trying to hang on to a pint and a half (about 600cc??) – I am continent until I’m not and then it’s man the pumps. However, it just emphasised the fact that neobladders are unusual and you need to be your own advocate.
Kind regards
Sarah -
Hi Sarah
I’ll start off by saying that I’m a man, 44 years old (next week!). But I had a similar diagnosis to you and in the UK. I had my neobladder here in Bristol in October of last year. I was thinking how you reminded me of my astonishment at just being let loose with my new plumbing with not much aftercare at home. Those first few weeks are very scary and I remember there being so many unknowns that I felt I needed guidance on. In particular I was incredibly worried about the new neobladder stretching to bursting point and watched my bag like a hawk! I also had the sweats you describe (although probably for different reasons) and remember waking up absoloutely soaked in sweat on at least two occasions. I was left alone to monitor temperature and the various infections and their treatments. I have to say though, on balance, I was given a load of telephone support by the uro-oncology team at my hospital and always met with people on that team that i’d seen before. my consultant has been really good, done a really great job and made the effort when Ive been in the post cystectomy clinics, to come and talk with me. His registrar and uro-oncology specialist nurse and staff in general are all personable and supportive but also incredibly overworked. I have been going for BC treatment for 14 years and in that time Ive had periods where I didn’t know who’s care I was under and it’s bloody annoying. I can totally understand how you would find not seeing the same person twice really unnerving. Consistency is everything and we grasp at the known and familiar when we’re facing the unknown every week!All the best
Tim
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I was discharged with absolutely no guidance on what happened next, what to expect, how to look after my neobladder etc etc, and without any advice on hormone replacement therapy.
That’s some story Sarah. I think it’s more common in the U.S. than we might think, there’s not enough awareness about women’s issues post bladder cancer. There are quite a few women out here making noise, though, and changes are happening. You can see how many are networking over this forum and our email group….a lot!
If you’re feeling better and up to it, perhaps you could volunteer to be a ‘mentor’, where women facing surgery could contact you via email or phone. If there is not such a program in place, well, there oughta be and it sounds like you’d be a perfect candidate.
Wishing you well,
Wendy -
Hi Sally
Nice to hear from you, and I hope that all goes very well on the future cysto’s. You have to make the presumption that if no-one said anything then all is well? But the fact that no-one does say anything means you have to wonder and possibly worry.
I do sympathise on the “feeling like a number”, there is such pressure on the staff at clinics – the one I go to is always overbooked and the wait can be anything up to two hours after your appointment time. It can’t be helped – the urologists are in theatre and then on rounds and if something goes wrong or they have an emergency, clinics take second place, and rightly so. However your well-being takes big dents in circumstances like this, and I strongly believe that positive support and a sense of being cared for is such an important part of recovery that it is almost as essential as the surgery….hope you can find it in your family and friends
Kind regards
Sarah -
Hi Sarah
I was found to have the tumour 2 days after my 44th birthday. Had one chemo instillation after surgery. Check up 2 months later then 2 x3 months then 4 months. Now awaiting 6 month cysto in June.
Felt quite confident in my surgeon at first but when my cystos were originally raised to 3 months just went into day surgery, didnt see any one other than nurses on ward. It has been like this ever since. No sign of consultant not even a registrar. Proceedure done then packed off home and told to see my GP if any problems arise. It has made me feel just like a number, in fact it quite upset me when I last came out because know one had bothered to tell me findings or th lack of.
LoveSally
Sally
T1B G2
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