Hi,
My Father was diagnosed with bladder cancer in March 18. Since then he has undergone several TURBT procedures, a course of BCG, followed by many UTI resulting in sepsis. The Sepsis damaged his heart and he had open heart surgery in March this year. Since then caner has grown, he has had several more TURBT procedures, lots more UTI, some involving hospital stays and IV antibiotics.
Due to one of his kidneys not functioning he was going to fitted with a stent to drain his kidney. Initially this was only a part not function kidney, but due to having repeate UTI/Sepsis/Heart problems’ the procedures keep having to be unavoidably cancelled.
He was in hospital approx. 6 weeks ago with a UTI and Epididymo-orchtis. After further sans which indicated the cancer had grown the consultant decided to go ahead with a TURBT procedure. After about 3 days and no sign of his urine becoming clear and umpteen bladder flushes they then carried out a secondary TURBT procedure. A couple of days later and although his urine was still quite blood tinged in colour they discharged him with the recommendation he was to urgently to be re admitted to receive a stent and possibly radiotherapy. Whilst waiting for the urgent procedure he attended for an additional scan and was asked to see the consultant as a follow up to the scan results.
I went along with my father, as I usually try to, and we saw the consultant together. It would now appear the stent is no longer a viable option and he needs to have a nephrostomy. This was scheduled for the following week (last week) but yet again because of a UTI the procedure has been cancelled and re-scheduled.
What I am struggling with is on our last visit to the consultant to discuss the nephroscomy, he mention for the first time the need for chemotherapy. We were a little taken back as up to date we had been told that it was a slow growing cancer and only the bladder was affected. A little taken aback, I asked the consultant why he now needed chemotherapy only to be told he has an aggressive cancer (and had for some time). To this I advised the consultant, we have, up to now, be lucky enough as a family not to be effected by Cancer and were are very uneducated about cancer, hospital terminology and also treatments. I asked had the cancer grown again and or spread, for which he said it was a sizable tumour that had now gone into the muscle of the bladder and quickly mentioned the pelvic bone. I advised him at no previous point had we been informed that the cancer was aggressive, had spread and grown to a sizable tumour and taken my Dad’s age, 79, and his now frail/tired state, was chemotherapy the only option. The consultant actually looked at me like I had suddenly grown two heads, giving me the impression it was chemo or nothing, but not actually answering my question. And then glancing at the clock on the wall said, I really need to just get your Dad to consent to the nephrostomy procedure as I have other patients to see (then he sighed). In a hurry I did ask a few other questions, but didn’t get any answers. It turned out to be more of a why is she asking these questions session.
What I am conscious of it that all throughout my Dad’s Journey he has been seen by many consultants, with the main one being in Urology. Can anyone shed any light on oncology and when you would actually get to speak to someone about the cancer and if there are options. I think we need to examine our options, explore alternatives and look at the pro’s and cons of everything. I feel like I’m going out of my mind getting help for someone who is wasting away in front of my eyes.
Apologies for the long post.
Hi and welcome to the community. It sounds as though your Father has had a really tough time of it and it is disappointing that his consultant has such a poor attitude. Chemotherapy is common in many cases as it helps to slow any spread and also tries to clear up any rogue cells. I was referred automatically to oncology so it may be something you need to question. Usually it is not a person's age which is considered, but more the fitness and ability for treatments. I have no experience of nephrostomies, so unable to help with that. The information you are being given sounds very sketchy. Has your Father been allocated a designated CNS (cancer nurse specialist)? If so, this is usually the best person to call for information. Best wishes.
Hi Sabbie. It seems as though your father has not had the quality of care that many of us have experienced. I was kept informed at all stages of my treatment and was copied in with the notes for all my consultations. You can ask to be sent a copy of the notes after each meeting. It does make things a lot clearer if you have it written down. If you are unhappy with your Father's treatment and lack of information, you may like to contact PALS (patient advisory liaison service) who may look in to your Father's case for you. Best wishes.
