T4n muscle invasive bladder cancer

Like all illnesses, there are statistics which help health providers to plan and prioritise as a service.  The same statistics can be viewed by patients and generally put the wind up them!  In this forum you will find a wide variation in the effects of bladder cancer on individual patients, together with the treatment plans which have been tailored to best meet their needs. Age is of course a consideration when looking at the different paths taken. However, the mutual support offered by people on this forum is pretty much universal.  

I have some similarities to your partner's case e.g. elderly (well, only 74!!), a bag (urethral catheter), bladder removal options considered but withdrawn by my consultants because lower risk options exist (I have a heart murmur) and last but not least my care is categorised as 'palliative.'  I had two TURBTs in 2018 and may need another one in due course as the cancer is slowly growing back according to the last flexible cystoscopy in April 2022. I was also shocked by the term 'palliative,' thinking it meant there was no hope.  What they really meant was that treatment would deal with symptoms as they arise in order to maintain quality of life for as long as possible. With luck, your partner will receive the same sort of care - rather than going for an all or nothing procedure which the medics consider too risky after examining the pros and cons.

I wish you and your partner the very best. Enjoy each day for as long as possible. 

Ray

Thank you Ray, i shall now ensure we do just that but pace ourselves. together time is so important. Y xxx

I'm so sorry to hear about your partner's diagnosis and the challenges you're both facing. It sounds incredibly tough, and it's understandable to feel overwhelmed. It's good that you're reaching out for support—connecting with others who have been through similar experiences can be really helpful.

Managing a urostomy bag can indeed be challenging, but many people do live with them for years and find ways to adapt. It might be helpful to ask for more information or a referral to a specialist nurse who can provide additional guidance and support on managing the bag and preventing issues like detachment.

It's also important to take care of yourself during this time. It's great that your breast cancer is benign, but the stress of caregiving can be significant. Moreover, if you want to download capcutproapk then visit the given link. Make sure to seek support for yourself as well, whether it's through friends, family, or support groups.

If there's anything specific you're struggling with or if you have any questions, feel free to ask. There are many people here who have been through similar situations and might have advice or words of comfort to share. You're not alone in this.

Thank you Joe, we met with a clinical specialist , now his key worker, but as questions arise its difficult being patient for subsequent appointments to arrive, and now the worry of where to obtain replacement bags. we have found that not all District Nurses are capable of helping, or offering guidance of where to move next. Its all a learning curve i suspect and proves i need to be on board more at each stage. Thus i feel a call to our local surgery for starters as t least we get to speak to a person who can at least put us through to a Practise nurse who is our best bet.

Hi Yavapi 

Can you confirm what kind of procedure your partner has had please and it might help someone to give you advice? I know you have said that bladder removal is not an option so he doesn’t have a urostomy, but it would be helpful to know what kid of bag system he has-for example is it a nephrostomy which has the tube or tubes coming out through the back and connecting to a bag to collect urine? 

Sarah xx

Hi. My husband had a nephrostomy as his bladder cancer tumour had grown into his left kidney. After a few scans, it was only possible for him to have a radical cystectomy. We have a wonderful stoma nurse and we've found that it's easy to obtain bags from Coloplast. They're in Peterborough and have everything you need. They're online. Talk to your doctor and you should be able to get bags and anything else on prescription. 

I've also found Coloplast to be good and they'll deliver quickly to your home. I've used them for several years for consumables such as bags and foley catheters. It helps them and your medical centre if you register with the Electronic Prescription Service (EPS) and have consumables on repeat prescription, with your GP's approval, of course. Coloplast can also provide items associated with the long term use of catheters etc. but tend not to stock oral drugs or Instillagel. Generally, District Nursing teams will request that you obtain prescription items through your GP if they are performing routine procedures but hospitals (A&E or Same Day Emergency Care) will normally obtain items needed for treatment from their own stock.  

Yes its a nephrostomy bag, Yx

Hi typical, as it turns out i persuaded him to ring the district nurses direct and explain that he was due to run out today, er wednesday, and hey presto more bags were delivered befor 6pm. Now thats our kind of nurse, and thank you all for your support. Yxx

Hi Lbell, Sadly we have already been advised that although his cancer has spread beyond his bladder to have a cystectomy at his age, based on statistics - many don't last beyond 12 months, and thus not advisable. And so we continue with the bags and Palliative care for the future, tough for us, but as another put it, make the most of every day and moment, Yxx