hi,
as the subject line describes, my dad (70 and otherwise robustly healthy) has just been diagnosed with a rare form of bladder cancer. We have had conflicting information from the oncology department and our GP. In short:
1. The oncology nurse who delivered the diagnosis on the phone yesterday has told us that it’s a ‘fast growing’ and ‘aggressive’ tumour which is rare; that he will receive an oncology appt next Friday with two consultants at a specialist centre; and that the treatment options offered will be 3 (?) rounds of chemotherapy, which could be followed by further surgery (removal of the bladder). My dad underwent a procedure a couple of weeks ago to remove the tumour from his bladder wall - it was apparently very successful. It stopped the symptoms (blood in his urine) and he has never experienced any pain. So yesterday when we received this diagnosis we were in total shock and very frightened, but at least hopeful that it could be treated with chemo and hopefully cured.
2. Today we phoned our GP for further clarification on the prognosis because we felt we had a lot of leftover questions. He had access to the surgeon’s notes and the consultants’ report and he told us more directly about the prognosis. Namely, that this kind of cancer affects only between 1 and 9 people in a million, and that the chemo will not be curative, but would buy time. We are all in total shock as a family, we have not had any experience with cancer before. Furthermore, my dad is totally healthy and still working as a teacher. This has all happened over the course of four weeks, from what we suspected was a mild UTI to basically what I’m now being told is effectively a terminal situation with a very rare form of cancer.
Im lucky enough to be living at home with my parents right now but I’m feeling desperately anxious about how to cope even between now and Friday’s oncology appointment, when we hope to get more answers. Because so many things have changed so quickly with my dad’s situation, I keep waiting for the other shoe to drop. I’m managing to just about to adjust to one piece of bad news when something worse comes along, and it seems such a long time to wait with that level of immense anxiety and uncertainty until Friday.
Does anyone have any experience or advice with this type of cancer? I don’t know the exact name because we’ve been advised not to google it, but if it’s as aggressive as it seems to be (becoming this dire so quickly) then I’m wondering what kind of time I might have with my dad, if something terrible might happen before we can get any more answers from the oncology department, or if he might deteriorate between now and then?
Lockdown exacerbates everything obviously, but I just feel so at sea and have no one to ask about these medical questions. My mum is fielding all the medical calls etc just now and looks totally exhausted and my dad is understandably devastated and doesn’t know how to feel.
please help x
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your dad’s diagnosis but I do hope that you will find the support in the Community very helpful but unfortunately I cannot give you answers.
A cancer diagnosis can indeed bring a lot of confusion, stress and many questions but I found talking with people who were on the same type of journey helped a lot.
I see that you haven’t joined any of our support groups yet so can I direct you to our supportive find our Bladder cancer group.
Posting in this group will give you the opportunity to talk with people who know exactly what you are all dealing with at the moment.
Follow the link I've created, join the group, then hit ‘start a discussion’ and you are ready to go.
You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.
You may also find our Family and friends group a benefit as you will connect with others supporting family through their cancer journey.
Can I also highlight our various Macmillan Support Line Services on 0808 808 00 00. This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link but you may find the service very busy at the moment.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.
All the very best.
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