CIS symptom management

Hi LAS

You need to speak to your fathers medical team , only they can answer your questions with certainty. It depends on age, comorbidities,general health and prior bladder cancer history and the extent of the CIS. 

Good luck

Thanks for your reply. Yes I have gone back with questions but they are being vague and not wanting to give likely prognosis etc so I thought I would ask for experiences on here while fully understanding there is a wide spectrum of experiences depending on a variety of factors. 

That is the problem, the range of factors. There are one or two people here on palliative care, who may be able to give you more information. Essentially they are saying this is a treatable but not curable situation, but are cautious about predicting how things will go. Symptoms will depend on where the cancer goes.

Try to just take things a step at a time and enjoy whatever time left, be it months or years. Best wishes.

Thank you for your kind response 

Hello LAS, 

I had to Google CIS with regard to cancer. If my understanding is correct it probably applies to my case as well. I had a 7cm tumour which was considered to be non-muscle invasive after CT scan analysis. Medium dose radiotherapy was carried out rather than a TURBT after pre-op discovered a *co-morbidity. The radiotherapy destroyed 95% of the tumour.  *(Mitral valve regurgitation was diagnosed following the initial heart murmur finding).  Unusually, the attempts to perform biopsies during my two subsequent emergency TURBTs were unsuccessful because I was bleeding so much that the consultant surgeons could not land precisely on the remnants of the tumour. They were nevertheless able to scrape and cauterise the areas which were bleeding. This was back in 2017 (radiotherapy) and 2018 (TURBTs). In early 2019 I was signed off by Oncology and Urology for 'Palliative Care.' This was a shock at first as I associated the term with the final stages of cancer. In 2018 my condition was very serious. My son and daughter were told during my hospitalisation that I might last a week. An optimistic nurse reassured them with an estimate of a month. That sounded about right to me at the time. It transpired that palliative care meant 'palliative treatment regime.' Much to my surprise, I'm still here in 2026, living independently (alone) and driving etc. Treatment has been a succession of long term Foley urethral catheters each replaced at 12 weeks until 2022, then somewhat earlier because they kept blocking at 1-8 weeks. We are now having some success with 8 week intervals with me carrying out water flushing on alternate days. My tumour is slowly growing back. No other medication or scheduled reviews have been necessary to date. I hope this illustrates the variability possible regarding prognosis/life expectancy, palliative care and the impact of co-morbidities which in my case prevented any form of chemo or BCG treatment. It has worked out ok for me. I hope your Dad has similarly good fortune. Apologies for the essay!  Best wishes,  Ray x  (Male 76)  

Hi Ray

Thank you so much for sharing this with me. It’s much appreciated and exactly the sort of example I was hoping to read to give an idea of the spectrum of experiences there are. I just have no idea (luckily!) of how this can affect people once treatment stops. 
Best of luck to you and take care of yourself.

Best wishes

Lucy