Hello all , I am new to this group so best wishes to all of those effected directly or indirectly by bladder cancer and all other cancers.
My question is about staging and prognosis. My health professionals seem reluctant to give me a specific prognosis other than saying that my cancer cannot be cured, that treatment will be palliative and that I probably won't make 5 years.
As I'm writing this I'm thinking that very few people have the luxury / burden of knowing exactly when they are going to die therefore I should stop thinking about it. Does this strike a chord with anyone?
A specific query about staging is that following a histology report ( post surgery) I was told my cancer was T3b. I am now told that the cancer wasn't fully removed during the radical cystectomy and that some remains in the pelvic wall. Does this mean it is stage 4? Perhaps I shouldn't obsess about it but I feel the need to know even though it won't make any difference to the outcome.
Sorry for the long rambling message!
Oh Rich, I’m so sorry to read this, I can’t help you but I do know someone will be along soon who can give you the info you want. I just couldn’t scroll past after reading and want to send you hugs and things x
Hi, that's so kind thank you very much. I should have thought not to put a downer on other folks' festive period!
headgardener . Hi Rich from another Rich and a warm welcome to the group. I have not had RC, so not in the best position to answer your concerns. As far as the 5 years prognosis is concerned, this is just a standard figure that medics use. The truth is they do not really know. Everyone is an individual. T3b is borderline between T3 and T4 and means the tumour has penetrated the fatty tissue on the outside of the bladder. In your case. it sounds as if some rogue cells have broken through and taken root in the pelvic wall, but we have others here in the past with a similar diagnosis and have come through it. You mention palliative care. Many people think of this as a sort of hospice treatment, but that is not the case. Palliative care is the treatment and management of symptoms in order to preserve a good quality of life. We have a group here for people living with incurable cancer and many of them have been here for many years. I don't know why you have not been offered any further treatment, and so you may like to try for a second opinion. You could also explore any trials going on. No need to worry about downers and timings. We all understand. Best wishes.
Best wishes to All, rily. What is a Community Champion ?
Hello Headgardener, sorry to hear the diagnosis you were given which must feel pretty frightening, though as Rily says others among our number have also been told their treatment is palliative and are still with us and enjoying life. Many of us have frequent reoccurrences and we never know when it will pop up again, there are no guarantees for anyone. For my own part a cancer diagnosis has helped me to value each day. I don’t sweat about the unimportant things as I did, and in consequence I am more at peace with myself. Better able to say it is what it is and accept it. It’s far less exhausting than fearfulness. There are so many new treatments being developed and though there may not be a cure perhaps things can be delayed as others have found. Don’t hesitate to message anytime it would help you, nobody understands better than us. x
Hi,I am sorry to hear you have this diagnosis.It is a lot to cope with after such major surgery.There is much support,advice and friendship on this board so keep posting.How are you finding recovery after your cystectomy ? Love and best wishes Jane XX
I echo what the others have said. The '5 year' thing is driven by the simple fact that there has been no survival research done beyond 5 years. I was G3T2 and had RC, I was told I had an 85% chance of surviving to 5 years. Suggesting I have about 18 months left. I know patients who had their RC between 10 and 20 years ago. The short answer is that the statistic is misleading.
I agree fully with Rily that you should seek a second opinion. Even if your bladder cancer has spread, your options may include chemotherapy or newer immunotherapy at a different hospital, preferably one of the recognised centres of excellence like Bristol, UCLH, Birmingham, Manchester, Cambridge or Reading, for example. Just tell your GP to refer you as you may go anywhere you wish.
Let us know how you get on.
What if the Hokey Cokey IS what it's all about?
I was listening to a radio programme the other day which included issues about terminal illnesses - mostly the doctors can't predict imminence of death until last few hours. They can only go on previous case statistics; x no of people with this same diagnosis lived y years. The spread of possible timescales could be y+/- z.
So your condition is treatable, if not curable. I agree about finding out what is possible - then you can decide what to do. Some treatments are so unpleasant that people choose quality over quantity of life. As we all get older, something is going to finish us off sooner or later & who knows what or when. Ideally we should all be living as best we can & keep our affairs in order, just in case.
Anyway, wishing everyone the best for the New Year.
You are not putting a downer here. You will be supported at all times in this forum
Rich, you’re not putting a downer on here, just post whenever you want, we’re all here for you all the time X
Hello Rich from yet another Rich. My bladder cancer is all incurable although the oncologist didn't give a long term prognosis. Finished 9 cycles of gemcis last year. The only side effect was fatigue. CT scans showed all tumours have shrunk. Treatment is palliative. I can expect a reasonable quality of life so hope this is your experience.
Worth asking about trials. I am on the Atlantis trial. Will get the result of the first scan on a new drug today. They take a sample and detect biomarkers for your particular strain of cancer. Then prescribe one of three new drugs. Wiped out when I first went on rucaperib but no problems on a slightly lower dose.
Keep us posted.
Fingers crossed for you today Richard 1944. What a richness of Richs we have on this site! x
Hope all goes well today
Love Inanna xx
Hello headgardener, welcome to the forum. There are many on here with similar situation to yourself, so you can feel confident on getting good advice as received above.
I am at the beginning of this BC and awaiting my second tURBt to remove another tumour, so whilst not at your stage we all seem to be on a roller coaster ride.
Take heart from others , and I too would agree re see GP and get second opinion re your treatment. You have nothing to lose.
I wish you well and never fret about posting on here, there are many here for you.
Hope everything thing went well for you Richard 1944, x
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