Radical cystectomy

Hello and let me welcome you to the group. It is a difficult decision you have to make, so good to know you are trying to get as much info as possible. I did not have RC so cannot help with that. Just to let you know we have members here who have and should be along to share their experiences when they pick up your post. I notice from your profile that you have been diagnosed Grade 3. Do you know the staging as this may help ? Best wishes.

Thank you Riley. The cancer was at a non-muscle invasive stage. T1. I have been told that it "curable". As the bladder cancer is in the prostatic urethral lining, the BCG vaccine treatment may not be so effective apparently. I am trying to get this moved on as quickly as possible. My head is all over the place since I received the 'news' on Wed. last. Best wishes

Hello Ludwig

I'll be happy to advise you here or talk to you directly about RC, had mine just 2 years ago last week. I advise and counsel regularly through the Reading Bladder Cancer Support Group Trust so always pleased to offer support to fellow patients.

CB 

I would be grateful for any advice or be able to speak to you. I only was told last Wednesday about my diagnosis and have been offered surgery or BCG vaccine treatment but for my cancer, it seems that surgery might be more effective, I have pretty much decided on that. Maybe you could give me some indication as to how it went with you. Thank you very much. 

Best wishes

I chose surgery for my BC, for best prospects.  It is tough, but certainly doable. I was 57 & 7 years on I have no regrets about my choice. I'm female so the effects are a bit different, but am happy to give my experiences. I had neobladder (internal reconstruction) but if urethra is involved, that may not be an option for you.

Mine was open surgery & I had the minimum 7 nights in hospital, with no complications. Extremely weak & tired at first, but out of bed from Day 1 - it's important to get walking as soon as possible. Recovery can seem very slow, it was about 6 weeks before I started going out to leisure activities & 3 months before started phased return to work. It took 8 months to really get over the fatigue.

Hope all goes well for you.

Thank you Teasswill. I am pleased it went well for you. It is so helpful to get this information.

Ludwig

I've sent you a friend request. If you accept it, I'll send you my contact details.

CB

Hi Ludwig

Here's some information about my experience of RC with stoma and bag. Teasswill is the neobladder expert so any neo questions best put to her.

Choosing a neo or a stoma is not one any of us would wish to make but life will go on afterwards. I had an RC just two years ago. I am very happy with my choice and it has become part of my new normal. Here's some information from my experience:

Surgery - this is two major ops in one taking about 5 hours or so and is a battering for the body even if done robotically. I was very apprehensive and decided to go for it as I'd been given only a year to live. Radiotherapy would only have stemmed my cancer for a short time so cystectomy was the only real option to avoid the cancer coming back and spreading.

When you wake up after the op you will feel drowsy and elated due to the drugs. You will feel uncomfortable, tired and sore. Take all the drugs they give you for pain relief. Most patients get lucky and have no complications. The physio-terrorists will have you out of bed on day 2 and walking soon after that. Walking helps the bowel get moving again. Pray for wind, it's a sign that the bowel is ok! You'll be on a sloppy diet so as not to stress your digestive system.

I hope you have someone at home to care for you as you won't feel like doing anything for a couple of weeks. To be candid, you should expect to feel weak and bloody awful for up to six months but then suddenly you will feel better. Eat plenty of nutritious foods, high protein stuff is good as it aids recovery. Do not attempt to lift anything heavier than a kettle for at least six weeks.

The stoma - your stoma will most likely be to the right of and slightly lower than your navel. It will be 25mm to 35mm in diameter, pink, wet, look wrinkled and ooze mucus which is normal. This makes your wee look cloudy but that's ok. The stoma pulses, it is the maddest thing to watch but then it's made of bowel so that's to be expected.

The bag/pouch - the stoma nurses will train you how to manage and change the bag. It's a doddle after a few changes and you will develop your routine. You will get a shoulder bag with pouches, adhesive remover spray, wipes and disposal bags in it. It takes a few weeks to find the best bag for you. I change my bag on most days and always after two days. I use adaptor rings too as the ring creates a better seal around my stoma and stops the skin from getting soggy and irritated. I use Pelican platinum convex pouches. Once your stoma has settled down you can have the bags laser cut to stoma diameter size. You can get samples, a fake stoma and other bits and bobs to practise with so you know what you might be waking up with.

Leaks - are rare but inevitable. When I go out away from home I take spare boxers, trousers and my shoulder bag with all the kit in it and leave it in the car boot. Otherwise I take the essentials in a back pack. You need to empty the pouch frequently. I monitor mine by patting it gently. Keep an empty drinks bottle in the car for emergencies or you may end up like me, standing in the central reservation of the M4 in a jam, splashing my shoes!

At night, I put the drain bag on its stand in a square washing up bowl. The bed has a waterproof cover on the mattress. The drain tube can pull the pouch off so be aware of that and don't crouch with a full pouch or you will get soggy feet.

I had my op in January 2018, experienced major complications, felt bloody awful until June and now feel better than before diagnosis. You will get through this, it will mess with your head, there will be dark days and you will be alive. Plan what you enjoy the most and go do it.

Let us know if you have any further queries and good luck with the choosing. If you'd like to chat I shall be pleased to help. Check the Macmillan website for a support group near you or get in touch with  Fight Bladder Cancer charity fightbladdercancer.co.uk/ or Reading Bladder Cancer Support Group Trust  https://www.readingbladdercancersupport.org.uk/index.html for yet more information.

Immunotherapy is in its infancy but may be worth discussing with your oncologist.I know of a patient who has had very encouraging results with atezolizmulab.

Give me a call when you are ready.

CB

Hi Ludvig

I was diagnosed with Stage 3 invasive bladder cancer just 12 months ago. I chose RC preceded by several rounds of chemo which I found very unpleasant. I had my surgery last July at the age of 75. I was warned I would feel rough for 6 months plus. In fact after 3 months I felt 'back to normal' and now 6 months later feel better and fitter than ever. The new plumbing arrangements were a little inconvenient at first, but you quickly become accustomed to the 'bag'.

I have no regrets about the treatment I chose.

Good luck with whatever treatment you decide.

Hi Ludwig I'm 71 years young male. I had my bladder removed last February and my prostate removed keyhole surgery.I do not have any regrets having operation. My first follow up C.T scan was all clear. After three month of my surgery, I was offered four cycle of chemo which I accepted. I'm now nearly twelve months post op and looking forward to long life. Bladder Cancer is very treatable now days.

Bobby