Radical Cystectomy - Options

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Hi, I am new to the group having been diagnosed in mid November with bladder cancer. It is in a diverticulum attached to my bladder which gives it an extra twist, however the overall prognosis is that everything needs to come out - bladder, prostate, lymph nodes, and seminal vesicles. Despite the obvious shock I am positive mentally as just need to do what needs to be done, as at 54 I am not  prepared to give up. However one of the big decisions I face is the options for how to urinate in the future. There are fundamentally two choices - urostomy bag or neo bladder. Both have pro’s and con’s from the research I have done. I will have to be partly guided by my surgical team but do have a say ultimately and am interested in talking to people who have been through the operation, discussing which way they went and how they feel about their choice now. Sorry for the long blurb but as we all know on here I am sure - so many questions !! 
Thank you to anyone prepared to share their feelings on the subject. I really hope and intend once I am through this to somehow help others on the journey, when they need it.

  • Hi . Sorry you have had to join us but you will get plenty of support and advice here. I went a different route, so unable to help. I would just like to take the opportunity to welcome you to the group. Lots of experience here, so I am sure someone will be along to share experiences. I hope all goes well. Best wishes.

    Best wishes to All,   rily.

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  • Hi Andy001,I had a cystectomy in Sept 2019 and due to an existing bladder disease before cancer a urostomy was my only option.I’m lucky in that I haven’t had any problems adjusting to life with a stoma.My bladder was so diseased before cancer that it would have been removed at some stage anyway.The operation was hard,but I found the recovery tougher.It was slow going but after 8 months I was well enough to continue caring for my disabled mother full time.I think most people would say there are ups and downs to having a cystectomy.Now 2 years on I’m cancer free and living a full life.There is plenty of experience and support on here.I found this group incredibly helpful,I hope you do too.Best wishes Jane 

  • Hello Andy , I am the wife of a bladder cancer victim( I say that) as he's still not through it. My husband is 63 & as he had no other medical issues no,  diabetes,  blood pressure etc. He was offered a neo bladder. Which he had just recently Oct. 4th. Initially they were going to remove everything.  Bladder , prostate obviously lymph nodes. Although G3pT3. The cancer was the opposite end of prostate,  so he had a radical cystectomy(prostate sparing), bilateral extended lymphadenectomy and orthotopic neobladder ( N- configuration). I ve just copied that off paperwork 

     I will not lie. Massive surgery. So be as fit as possible before. Its exhausting  in the 11 days my husband was in hospital he lost around 2 stone. Even though we spoke to people prior. Nothing prepares you. Hopefully you have a really good support system around you.  As my husband now has put on 11 lbs. He can walk upright. He is still training the new bladder to be a bladder. So obviously there is some incontinence but mainly of a night. We are very slowly getting there. Unfortunately during surgery they found 1 of the lymph nodes to be cancerous so just in case a small cell escaped he is to start chemo in January.  But he will be a lot stronger.  When he 1st had the surgery OMG!! I Never thought he would get through, however the hospital were fantastic. The matron Wendy, called us every week, we had emergency no:s up we were in trouble. Luckily we wasn't.  As it is scary at first, it is great to have people with knowledge to talk to. So although it appears helpless. In this 14 weeks the improvement is amazing. I wish you love & exceptional recovery. If you wish to speak to my husband 1st hand. Reply to this & I will send you his number. Xxx as obviously he is the only one who can answer you truthfully. Xxx

    Kimdav

  • Hi Kimdav,It’s good to hear your husband got through the op and is starting his recovery.It is tough going,the complications,the ups and downs of the recovery.It is a relief when the energy and strength starts to return.Best wishes for your husbands recovery.Jane 

  • I had my neo 10 years ago age 57 & very happy with the outcome. Experiences do vary & on the whole I get the impression that males tend to get on better than females.

    If choosing neo, you do have to be prepared for initial incontinence to some degree during the 'training' period, so need to wear incontinence pads. To start with you have to try & hold for 2 hours (maybe 3 at night), then empty - you need to learn a new technique for voiding. The time taken to train, gain continence & manage 4 or more hours between voids varies - it can be quick, can take months. Nights take longer than days to improve & you have to get up to empty every night for evermore. Some men end up using a condom catheter & collecting bag at night if continence doesn't improve. You may also need to learn to self catheterise ( some hosp require this anyway) & may have to rely on this if unable to fully void (more of an issue for females than males).

    Getting up at night has been the aspect I dislike most, but have got used to it. I need to self cath to fully empty but don't mind that at all. I am reliably dry by day, lasting usually 4 - 6 hours between voids depending on time of day, intake, activity etc. Nights vary, according to intake during the day & how deeply I sleep, so I do still use a pad at night in case of leaks. 

    Making the decision was difficult - neither option sounded that great. In the end I plumped for neo, partly because I felt a bag would need emptying too frequently & would be inconvenient for my (then) long commute & the nature of my job. Neo is hard work at the start but low maintenance long term. Best wishes making your choice. Happy to answer any specific questions as best I can. 

  • Hi Rily, thank you, and may I say that's one handsome shepherd in your photo !! Andy

  • Hi Teasswill, thank you for your reply and being so open about what you have been through. Certainly a lot of what you have highlighted are the concerns I have, particularly around training, continence and the risk of will it ever work properly as no guarantee. I am interested to discuss the ultimate success rates with the surgical team. I need to consider the surgical recommendation along with my personal feelings and the advice of others - an awful lot to think about as well you know. I have a few weeks to make my decision so something to think about over Christmas !

    Thank you again. Andy

  • Hi Kimdav, thank you so much for your comprehensive reply and sharing the journey you are both on. I do keep thinking that the hardest part is yet to come, however i already have experienced a full cut across my stomach for  gall bladder issues, so without wishing to compare, I have some idea of the experience of surgery that leaves you bent double, and not daring to cough !!! I have lots to think about and would at some point appreciate the opportunity to have a chat with your husband, however appreciate he is still recovering and we are all busy with Christmas round the corner. I am also for your sake unsure if there is a private/secure way to share telephone numbers on this site ? It is great new that your husband is making progress albeit slowly, but the main thing is it is in the right direction. Best wishes to you both. Andy

  • Hi Andy,You need to be as fit as possible before a cystectomy.If you are underweight try and gain some as most people lose weight.I lost a stone in the 10 days I was in hospital and a bit more when I came home.If you choose a stoma the specialised stoma nurses will explain how to care for your stoma.I was able to change the bag unaided for the last few days in hospital.You should be given plenty of pain relief.I had I.V antibiotics.To begin with you will feel tired and weak.It is best to have some help at home at the start.My sister took a few days off work so she could make me drinks and food.You probably won’t be feeling that hungry so eat little and often.I found bread too filling but I could manage sandwich thins with meat or cheese.I built up to small meals like jacket potatoes.I built up the distance I walked over time.You will need to listen to your body.It will send signals if you are doing too much.Recovery is a slow but hopefully a gradual improvement.Some days/weeks will be better than others.I did a lot of family history and painting/drawing during the recovery.I watched a lot of bad tv and sorted all my mothers personal papers and bills.After a few months I was able to get back to gardening which I enjoy.I’m happy to help if you have any questions.Best wishes Jane