We’d love to know what you think about our new site.
My saved pages
My father went into hospital 4 weeks ago and we have just been told that he has invasive aggressive T3 bladder cancer. My poor father is distraught as this has come from nowhere. He has been treated in the hospital at the moment and it is all very clinical and words like it is not curable, it will be his demise and he can expect to live from anywhere from from 18 months to 5 years. I am disgusted with what this has done to him and he is now scared and thinking that that is it, his life is done. He is a very proud man and after being in hospital for 4 weeks is now bed bound and so confused after the amount of morphine he has been on that his spirit has been broken. I don't know what to do for the best, it is almost like we are grieving and he is still alive. He is due to go to the Royal Marsden next Tuesday and is going to be an out patient then, my concern is that after being bed bound for 4 weeks and after hearing this news, he is losing the fight, without even starting it. He is worried about not seeing his grandchild again, never driving his car again or paying his utility bills. I know I have to let him get his head around this however I want him to fight so bad and give himself a chance. Any suggestions or people who have gone through this would welcomed. Sorry if I have not bad any sense. My father is 68 and prior to this was in really good health, mobile active and now he is the complete opposite, how do I get him back on track ?
Hi Darren - sorry to hear your news about your dad. My cancer is not T3, so I don't feel I can comment with much authority. There will be others on here who can and also if you are a facebook member there is a group called Bladder Cancer Support you can join and you will receive a lot of support and info on there too.
What I can say is that T3 means the cancer is in the fat layer of the bladder, but hasnt spread outside, which is good news. Look at the following site for a bit more info:- www.cancerresearchuk.org/cancer-help/type/bladder-cancer/treatment/bladder-cancer-stage-and-grade You will see there is treatment he can have. There is also a lovely guy on here called 'Engineer' who was T3 and was treated on a trial programme called Tuxedo in Birmingham and is now clear. So there is hope and you need to make your dad realise that. Positivity is half the battle. Good luck Darren and let us know how it goes. Deb x x
I can imagine how devastated your father must be with a diagnosis like that coming out of the blue, because I got a lung cancer diagnosis at the age of 67 (over 2 years ago) when the medics were looking for something completely different.
However, "incurable" doesn't mean he's going to die tomorrow, far from it. It means it can be managed, treated, and he can learn to live with it. I'm still 3 years away from being pronounced "cured" so I have a choice - roll over and give up, or carry on as normal. I've chosen the latter, because I have grandchildren I love, a wonderful daughter and a supportive partner. It doesn't mean the worry isn't there, it's more that I won't let it dominate my life. This is something that, once he gets over the trauma, your father will gradually learn. Once treatment starts, I think his attitude will begin to improve.
It's the not being in control of things that whips the rug from under your feet when you first get the news. Being in hospital, too, can be very demoralising. Everything is different, from the food to the routines, the ghastly tea, the people you have on your ward, the long stretches of boredom, sleeping, anxiety .... I was only in for 4 days after surgery but was already getting "stir-crazy", even after I came off the morphine. I do believe that once he gets home he will feel calmer and more able to assess things rationally.
What you could emphasise to him is the distinct advantage he has of having been in very good health, active and mobile, before the news. If he hadn't been told, he would still be doing the things he always used to. So it's his mind ( and the morphine) that's holding him back right now. His former good health will help him cope with treatment far better than if he'd been in indifferent health.
When his treatment as an outpatient (presumably chemo or radiotherapy, or both) begins, I think he'll feel that he's better able to cope. Does he have a specialist nurse at the current hospital, who could have a chat with him? If not, I'm certain there will be at the Royal Marsden, it's a wonderful place.
There are people in this Community who even after stage 4 diagnoses for various cancers are still kicking cancer's backside years later. Your father isn't a statistic, he's an individual with lots to live for, so do stress to him that this is not the end, but as Churchill said, "it's the end of the beginning". He's got years yet. Tell him I said so!
With love and hugs,
Thanks your kind words are appreciated. Luckily we are only 5 minutes away from the Marsden.
Thanks Deb. I have friend requested Engineer and his symptoms are exactly the same as my dads which hopefully I can I will keep you posted.
Hi Darren, I think when you're first diagnosed with cancer you think the worse, when treatment starts I think your dad will feel something is been done, start believing in himself and fighting it. Engineer gives good advice and I hope he can help your dad. Thinking of you both ~Sue x
Yes you are right about the morphine. It can and does take the wind out of you sails right enough.
You write: " he has invasive aggressive T3 bladder cancer. My poor father is distraught as this has come from nowhere. He has been treated in the hospital at the moment and it is all very clinical and words like it is not curable, it will be his demise and he can expect to live from anywhere from 18 months to 5 years. "
Frankly you have been given a load of cobblers to digest dear boy. The bald facts.
1. Radical cystectomy is the current standard for T3, why? Because T3 is deep in muscle tissue and only systemic chemo or radical radio gets to it. So (please forgive the blunt language) the gold standard remains at chopping it all out and getting rid of it - in the sense that most of it ends up in a bucket in the path lab.
2. Older patients do not do very well with this approach. Younger ones do. Again why? he 30 day survival rate for folk in their 80's shows a 20% mortality, those that do survive find fiddling around with stomas a right old pain as the site is prone to chronic problems. Not so with younger patients as they adapt have stronger immune systems and so on (Ref Teasswill who can give lots of good advice on how to look after a Studer neo bladder, training it to act like a bladder, no mean feat as the neo does not have the same feedback to the brain as a bladder e.g. half full signal or gotta go NOW signals). Many others who live with a stoma (no neo bladder or diversion, one through a tummy button) do pretty well.
3. What you were told, and unfortunately your dad as well was not quite the whole story. Especially as he was on morphine, immobile and vulnerable. The whole story here is that radical cystectomy is not to brilliant at his age. This is a fact. The fact was translated into 'untreatable'. So now he is on morphine, immobile, and hope removed. Not good. In fact very bad. Hope keeps us in the fight, and as cancer is fundamentally an immune system failure, hope is critically important.
4. So, on morphine, immobile, vulnerable and hope removed. What to do?
5. This is what to do. Get your dad looking at these two links:
I note Deb_M has mentioned TUXEDO having rightly picked up the fact that your dad is a very good candidate having had a radical cystectomy ruled out. Therefore he can be assessed for TUXEDO.
I am 66 just two years younger than your dad. Almost three years now since first diagnosis and 9 months since end of TUXEDO intervention. I am fit and well with no recurrence as yet. Which is surprising because I have lived through an extremely taxing 5 months leading to an event that had nothing to do with my own health, it culminated in the death of my son. Unimaginable stress and distress frankly.
6. You will have to move fairly quickly on this as your dad's grade is G3 and discuss with your local oncology people. Three rounds of systemic chemo need to be completed before trial admission. Check this with the trial co-ordinator and get a copy of your dad's pelvic CT's sent to Birmingham for MDT evaluation as soon as possible.
The six steps should begin the process. It looks like a lot of work and dedication. I cannot lie, that's because it is. Some would find being passive easy and dying not a problem, but I sense that you are not of that ilk and want to get your dad up and at 'em again. I would suggest that as soon as your dad is on the local chemo regime you can have a think about getting local accommodation for him (hotel or what have you) in Birmingham ready for the daily radio that is part of TUXEDO.
This will give your dad his hope back. And not false hope either. If you are in any doubt about the usefulness of hope in cancer therapy just take a look at the numerous breast cancer sites. There is no doubt in my view. If somebody has the audacity to say "false hope" just say "not false, clearly not 100% but certainly not false and infinitely better than no hope". Hopefully your local oncology people will not be insular or competitive and help as much as they can.
Best of the best to you both.
thank you so much for taking this level of time and detail in your response it is really, really appreciated. I am going to get right on to it.
I can understand that feeling of hopelessness after such a diagnosis. You must all be in shock.
With T3 already invasive, bladder removal is certainly not worthwhile, but had it been a better stage, a fit 68 yr old would be considered a good candidate for such rigorous surgery.
But as others have said, there is treatment and what's important is to maximise the quality of whatever time he has left, which the medics can only estimate. There are always some patients who confound predictions.
Hopefully once he is off morphine & has a treatment path recommended, or options to choose from, he will be able to move forward more positively. Perhaps he would benefit from talking to a cancer support group?
Best wishes to you all.
No problem Darren,
The main thing here is that your dad is not consigned to death row effectively with murmured "useless to maintain hope" very unhelpful comments.
The local folk may offer a TURBT. That means a Trans Urethral Resection of Bladder Tumour. This is a much smaller operation than a radical cystectomy. If I were your dad I would say yes to this as the post TURBT stay in hospital is but a few days with no sledgehammer pain meds required. Effectively the tumour (which oddly looks like a strange little polyp) is scraped off the bladder wall with a dig into the muscle layer as well. He is going to bleed after it but a catheter is used to flush the bladder, usually a Foley three way job, with saline. When the bleeding goes down to a rosy colour he will be let home for good behaviour.
It debulks the tumour giving chemo less to do. The pathology samples (3 cassettes in my case as the tumour was more like a little Bonsai tree than a polyp) can then be looked at by an expert with microscopes, usually a Pathology doctor and tests done on the samples. Your dad's grade will then acquire a small p as in pT3 rather than T3 meaning 'by pathology exam' rather than graded by CT image alone. More exact to have a small p.
Ask for the 'phenotype' of the cancer. Number one, the question itself will enable the path lab to set aside time to do the test. Number two it will tell Birmingham much. for instance if the phenotype (a long string of letters and numbers) contains CD20+ then the CD20 protein is a good target for a particular chemo. The pre Birmingham 3 rounds of 'chemo regime' can be tailored in accordance with the phenotype. All work but useful work.
Best wishes, we all know what your dad is going through - and you as well.
thanks Engineer i have prepared a list of questions to ask tomorrow. i really appreciate it.
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.