Muscle Invasive Bladder Cancer in older adults

Hi huxley hound and welcome to the group. Nice to see you are here supporting your Dad. In general, any treatment would go by fitness rather than age. Lots of experience here, so feel free to ask any questions. Best wishes.

Hi 

I'm new here and posting on behalf of my Dad who is about to be 86. He has recently had the TURBT procedure to remove 2 large tumours in his bladder ( only diagnosed after  recurrent UTIs).   He has no other co-morbidities apart from Atrial Fibrillation which is symptomless in his case and has probably been present all his life. He is hard of hearing but cognitively very able and still tutoring Further Maths A' Level.

In the post -op appointment with the surgeon he was told that a swollen lymph node had been observed in his pelvic area but no spread outside the bladder.  Also told that the larger tumour (4-5 cm)  that was removed was within a diverticula and therefore complicated to remove but had done so but would need radical radiotherapy and possibly chemo but that this would be discussed with the oncologist.  Told that cystectomy not recommended over radiotherapy at this time.  

Oncology appointment was yesterday and was told that no  treatment other than palliative care would be offered ( 6 radiotherapy sessions spaced out).    Dad currently feeling well in himself ( despite recent recovery from Covid too) and the removal of the tumours has improved the annoying frequency of urination so that has helped.  He was told by registrar that no radical radiotherapy to be offered as he would be more likely to have the rarer and more severe side effects ( but when questioned by my ever tenacious and well informed Mum about the evidence for this  was not offered an explanation).   Mum had also asked about whether the tumours had been assessed for suitability for immunotherapy ( the surgeon stated that this would be done before the oncology appointment) but was told that that hadn't been done due to the above decision re palliative care only.   Mum also questioned why there was no further analysis of the lymph node involvement and again did not really receive an answer.

Dad and Mum both want to explore a second opinion ( and are aware that the same conclusion may be reached) but strongly feel that further exploration and options have been taken off the table due to his age.  We of course realise that for him, given that he may only live for another few years anyway,  there needs to be a balance between quality of life and aggressive treatment. However knowing that all the options have been thought about would be really helpful for them both and to be honest good for us as a whole family (I have 3 siblings).

They understand that they can request a second opinion from the NHS and also interested a going private for a second opinion even if this is a one/two off appointment.  

Thanks for reading so far - my questions are really around how much to persist in getting some of our questions answered

Cx

Hi huxley hound. We have had members here who have had radical treatments when in their 80s. Like I say, it is usually determined on fitness rather than age for treatment. The problem with seeking second opinions is that it can cause delays. I was younger than your Dad when I had radiotherapy treatment, but didn't find it too punishing. Maybe ask  ask for answers on why better treatment would not be offered. Best wishes.

IMHO as they say, push as hard and as fast as you can for not letting some idiot write your invaluable Dad off like this. And with Mum as you say tenacious and well informed if he needs support through aggressive  treatment she will be well able to give it, especially with four of you to back them up. 

Do keep us posted, don't let laziness and assumptions cheat this world of any of the time your Dad should, I say should, be in it.

Denby

Thank you so much for replying.  I'm trying to work out how they assess fitness for radiotherapy treatment given that he has no clear co-morbidities other than being 86!. 

 Does any one know how they assess fitness for radiotherapy? ( from what I've googled there are various scales but I wonder what they do in reality)

Do people think that assumptions are being made about rapid spread of the cancer due to the swollen lymph node observed ? Or do they assume that muscle invasive is aggressive and therefore chemo required that he may not be able tolerate?

He he has not been scanned again or had another cystoscopy since surgery so no idea what's going on at the moment in his bladder or with the lymph node.

I'm concerned about the delay a second opinion will take but they don't intend for him to even have a planning session for the palliative radiotherapy sessions for another 2-3 weeks (he's signed up for that anyway!) and there isn't any other treatment being offered at the moment for them to delay.  My understanding is from ring around the private clinic bits of place like Clatterbridge is that a private second opinion would be offered pretty quickly.

Has any one else gone for a private second opinion?

So grateful for any help - I'm working my way through the relevant posts on this forum for as much info as possible!

Cxx

I'm with Denby's opinion 

We haven't gone for 2nd opinion but when GP was reluctant to refer my husband to the hospital  (despite a history of bladder cancer )after months of recurrent uti's I looked at the profiles of urology surgeons at our nearest private hospitals That was on a Tuesday Thursday we had a 35 minute face to face appointment and no GP referral letter needed

Have a look Cicle ex BMI hospitals or Spire

Costs of initial.consultation.£150 to £200 well worth it

Best wishes 

Wilbert 

Hi Huxley hound.

I know there are blood markers for Chemo, as my husband was advised not to have chemo before his R Cystectomy, due to low count. He was 79 at the time. No idea what the markers are relating to r/therapy, but the fitness trial before op for bladder removal is gruelling. My husband is now 82 and I realise that any intervention or treatment is quite hard on the body - even if the person seems healthy and strong for their age. I had proof of this in December when he had a minor intervention which resulted in a long lasting haematoma. He is well again thankfully, but the struggle took its toll.  I would definitely go for a second opinion for your father- if only to get answers to all the questions you and your family have. He should not be refused treatment because of age, but it does have to be taken into consideration I think.
My husband had radiotherapy for Prostate Cancer when he was 74 and it did exhaust him even then.

I would be interested to know where your father goes for advice/ treatment. My husband went to St James’s in Leeds for his prostate and the BRI for bladder removal.

Hi Canevara44,

Thanks so much for you reply.   Since I last posted we have not exactly had a second opinion but have had another appointment with the consultant oncologist (the previous appointment when we were told palliative only was with her registrar).  Anyway at this appointment the Consultant decided that my Dad could be a candidate for the more curative radiotherapy regime (20 sessions - one a day for 4 weeks plus adding in a tiny amount of chemo 1 day a week to "sensitise the cells").  We appreciated that assessment for whether  he was fit for radiotherapy are combination of subjective and objective judgements such as blood markers but, even though we had a long appointment with the consultant still unclear as to what judgements were made to put the curative radiotherapy option back on the table!

I'm the eldest of 4 and the rest of my siblings are of the opinion that we should have a second opinion anyway to reassure ourselves and him that we have thought of everything.   Personally I am concerned at how exhausting radiotherapy will be for him and the impact on him mentally ( he enjoys his food, TV, dog walks, holidays, chatting to anyone and everyone and pre-pandemic was tutoring A level Maths to several pupils each week in their homes so liked driving around and meeting their families too).   I'm also concerned that as a family we are not very objective as of course we want him to live as long as possible but I recognise that this needs to be balanced with his quality of life.

Do you feel the radiotherapy for his prostate cancer was something that had a long lasting effect on him?

What were the side effects like and what helped with that?

Also, if you don't mind me asking, what governed the decision for a bladder removal? ( we were told that due to the long operation, long recovery time and only slight advantage at this stage of removal over radical radiotherapy, that removal was not a suggested option)

Many thanks,

Cxx

ps his treatment will be at Bracknell HealthSpace ( could have been at Royal Berkshire but thats a longer drive from my parents house)

I do sympathise with your situation. It is difficult when different ‘options’ are put on the table and others are deemed unsuitable without adequate explanations. My husband’s P.C. radiotherapy was intensive (37 days over 7 weeks). Yes it did tire him but not too obviously at the time. He had no real side effects that he now remembers. I feel this may have been down to the quality of machines at St James in Leeds and expertise on the part of the radiologists.
St James is a specialist cancer hospital with it’s own hotel above as you may know. We often stayed there during the week and so travel (and tiredness )was reduced. 

St James in Leeds had a very good reputation as far as radiotherapy for Prostate C at the time and I imagine you have similar info as far as Bracknell is concerned. If your father decides to go ahead with his advised treatment , I think that feeling of trust is important.

My husband could not have radiotherapy for his bladder cancer, due to having had intensive treatment in the same area previously for his prostate. His tumour also interfered with his kidney function, so there was little time to waste. Decisions were taken for us!

Radical Cystectomy is a major op (7/8 hrs ) even when done by robotic surgery using the Da Vinci machine. My husband’s operation was successful and so far he has had no re-occurrence, but I know he would have difficulty with recovery now at 82. If he had been able to have radiotherapy again, I am sure he would have taken it 3 years ago. 
Hope this is of some use.

Hi huxley hound. Although my experience of radiotherapy was not for bladder/prostate issues I did have to have a course at the end of summer 2020 for breast cancer. It was at St James' Leeds and was 5 days a week for 3 weeks. I live an hour away from St James' and had nobody who could drive me there and back everyday, so after seeing a post on the breast cancer forum saying that they had driven themselves for their treatment, I decided I would also do that myself. I was 75 at the time but have had a lot of experience in driving and am reasonable fit for my age, a bit like your Dad.

I personally had no problems with the radiotherapy or the travelling as I just focused on that alone and took it one day at a time. There were many older people that I saw, coming into reception alone, who had driven themselves cos they would moan about the parking LOL.

I would say if your father has access to being driven there and back, any tiredness and stress should hopefully be ameliorated. 

All the best  Kathy x