Dad, 81 - muscle invasive bladder cancer

Hello Sage, Welcome to the forum but sorry to hear that your dad is again facing cancer symptoms and treatment.

I was diagnosed in 2017 with very heavy bleeding as the main symptom. I had radiotherapy in 2017 which destroyed 95% of a 7cm non-muscle invasive tumour but it required two follow-up emergency TURBTs in 2018 to attempt to remove remaining bits of tumour which were causing continuous bleeding. My bladder still tends to bleed several times per month, fortunately less severely. In order to minimise bladder expansion and contraction which was considered to be exacerbating the bleeding, I've had long duration Foley urethral catheters since late 2018, each changed at 12  weeks initially but now at 8 weeks because of blocking problems. My treatment regime has been termed palliative since early 2019. Since this is symptom driven, I am not on any medication or regular reviews. A flexible cystoscopy in 2022 showed that the tumour was slowly growing back. I was not offered BCG or chemo because of a co-morbidity (heart). I live independently (alone) and drive, go shopping etc. I'm now 76. 

Each patient will of course present different combinations of symptoms, severity and medical history, meaning that treatment options and outcome cannot be predicted. However, there are many of us on here who have faced an uphill battle with this insidious disease and are continuing with life, albeit with modifications. If you click on a member's name or screen symbol, many have added more detail in a profile. My advice? Take each day as it comes. Enjoy the better days and grit your teeth to ride through the not so good days. My best wishes to you and your dad.   Ray  xx 

Thanks so much for your reply Ray. Amazing that you have a dealing with this so bravely for so long. Really helpful to know that you are not taking any medication or under regular review except for your catheter. It’s the same for dad which I was quite surprised about. We feel as though we have just been left to get on with it. Dad is bleeding at least every couple of days and it’s hard for him to accept that this is the new normal. He keeps asking how can he go on if he’s passing blood all the time. Really feel for him. Thanks again for sharing - it helps so much. 

Hi Sage,Welcome to our friendly group.If your dad is well enough for the surgery he shouldn’t find the stoma too hard to manage.I’ve had a urostomy since 2019 and have an intention tremor in my hands and manage well.You soon develop your own routine once shown how to care for a stoma.It can be a bit trial and error to choose the right pouch/bag or you can be lucky first time as I was.Apart from a few days I have kept to the same supplier.The stoma nurses are there to help and advise.Sarah one of our community champions has two stomas and I expect she will be along to share her wisdom.Best wishes Jane xx

Sage, I'll agree with the 'amazing' bit, in that I'm continuously surprised to be still here, but brave errr...no . I hope your dad's medical team can offer treatment to stop or suppress the bleeding and maybe give him the pros and cons of surgery if that is an option. With me, it remains as a risky option, the increased risk resulting from my heart's reduced efficiency being less than ideal for a long operation. I have been offered another TURBT or possibly more radiotherapy if symptoms warrant (e.g. if it spreads outside the bladder). Currently, and since discharge from hospital in 2018, symptoms have been stable and tolerable so I'm content to keep plodding on. My GP, A&E and Urology see me often enough to keep an eye on me as I seek advice if I suspect a UTI or have a catheter blockage which I cannot shift.

If your dad feels that he is lacking energy to do things that he could have done recently, or indeed if he becomes concerned about symptoms or needs medical advice, tell him to phone his GP or a contact at the hospital. Hesitation or soldiering on is a characteristic common in men!!     Ray xx     

Hi Sage,

I'm another who now lives with a  stoma (a urostomy, 3 years plus) and finds it manageable. In fact from soon after the operation I found it very straightforward including the bags.  One big benefit is better sleep as the urine collects in a large night bag which you empty in the morning.

My husband is in his 80s and would be able to deal with a stoma if needed.  It helps if your father is reasonably active and willing to have a go at things. Like everything in life it's just a matter of getting used to it.

The main thing that is needed is enough stamina to have the operation. The medics always say it's like running a marathon - takes 5 hours or so. Though I can assure you that I would never be able to do a marathon, but had no problems after they removed my bladder.

Many people seem to be put off by the thought of having a stoma (or 2), sometimes because it may be uncomfortable or messy or just that we learn to find bodily wastes unpleasant. I found that changing my stoma bag is just like changing my daughter's nappies nearly 50 years ago - the process is just as easy. And these days I forget I am wearing a bag, until I notice it is filling up. And then I deal with it.

Whatever your father decides I am sure it will be manageable.

All the best,

Latestart

Hi Sage. It sounds like my 80 yr old Dad is in a v similar situation to yours. We got the diagnosis of muscle invasive bladder cancer last Monday and are waiting for a full body PET scan next week to see if it’s in the lymph nodes. He had a TURBT back in April and rarely has blood in his urine now thankfully.  There’s talk of removing the bladder, depending on the outcome of the PET. Aside from waiting for the results the main thing that is worrying us is that Dad is so very depressed. He’s running to the loo almost every hour (day and night) and appears to have given up all hope. I appreciate his diagnosis is still v recent, but he’s been having symptoms for a year now. Take care of yourself Sage and v best wishes for your Dad. Janice