Treatment, no ups just constant downs

Quitit23, hope today you are feeling a lot better about how you feel and the way things are moving. I am not keen on our oncologist and really have to bite my tongue at some of his comments, especially as husband finds them funny. I have learnt that you have to have the patience of a saint with the NHS and for me it isn't easy as I expect things done yesterday. I feel our oncologist is reluctant to answer questions if they come from me or if I question something he has said. What I do now is write everything down prior to seeing him and then get husband to ask the question so it looks like it is coming from him. Maybe in your situation things change quickly which is why the length of treatment time changes. We were initially told radiotherapy and chemotherapy but it is now just chemo after he had more scans. X 

Contact pals at the hospital they hopefully  get things  sorted  quicker

Hello Quitit23

I hope your hospital meeting went well today and you have the answers to the questions you have raised.

Once you have digested the information from the hospital and you are home and settled, would you care to share the current situation with us in the Community so that we can point you in the right direction for the help and support we can offer.

Best wishes

Brian.

Hi Everyone

 Thanks for all the support etc yesterday.  Through all my ranting, moaning and general despair i think we are sorted.

Went in today, and for completeness i will start at the beginning and run through the story.

Hubby diagnosed at Gleason 6 in Feb this year, but at the time they rounded it up to 7 (dont ask me why!).

He was told he was T2 - The cancer was felt and seen on scans but still contained in the prostate.

He was stage NO - No cancer in lymph nodes

He was M0 - No spreading of the cancer.

PSA 32

BUT told is likely its been there for 10 years, and his symptoms at home did back this up.

His treatment plan has been bitty and extended. Everytime he went in they added more and more.

He has the hormone injection every three months, this was at the time of first administration being given for 2 years.   He then went in again some 6 weeks later and was upgraded to GS of 8

He was then given Abiraterone and told for 2 years, this along with steroids.

He was told he would be having 23 sessions of external radiotherapy followed by the high does rate brachytherapy.

He was then told that the radiotherapy would not start until March 2024 - because a machine was down. i said that was hardly our fault.

At this point he was told he would remain on hormone injections for two years AFTER the radiotherapy ended.  He would have to do two years on the aviraterone.

 It all seemed excessive, and something wasnt right.  He was falling apart, and unable to challenge, and i had left him to go alone to allow him control.  He was increasingly scared, and all the associated problems from a cancer diagnosis. I havent been calm and we have been very much struggling.  every time he went in he would come out with another 6 months extending the treatment further and further.  They told him he was "high risk" and he would "die" if he didnt follow the path given.

So i went in today.  I admit i am not a nice person, and because i was so very angry someone came in and sat with us (not for me but for the Dr).

I said basicaly why are they throwing everything at this when his stats suggest not high risk, no mets and slow growing.  Why if he was such a high risk was there a massive delay in radiotherapy.  And basically why were they simply telling hubby to get on with it. 

After much wild arm flapping from me.  I was told, he was Gleason 8 and that was that.

They had reviewed his scans (after his diagnosis meeting) and upgraded him to T3 - even through there was no spread at all. But they just "felt" it was right. So this is why the aggressive treatment plan.

So we finally got the the bottom of it. 

It was decided that there was really limited benefits to the boost brachytherapy, as the side effects and delays were too much to handle.  As this was sold on the basis that it would cure the cancer and leave him cancer free longer.  Turns out this is limited, and honestly they cant guarantee anything. 

As a result of this the radiotherapy can be reduced to 20 sessions and started October this year.

He will stay on the hormone injections for the full 27 months, but this started when he got his first injection.  NOT from day of last radiotherapy.

He will stay on abiraterone until after the radiotherapy has finished, and then he will take it each month - in an attempt to stay the 24 months  again from start of first tablet NOT from end of radiotherapy. He may stop this earlier than the 24 months and he is control.

When i asked why he was told that the hormones were not doing anything more that stopping the cancer, i was told the truth.  They have stopped it and the massive decline in PSA and testostorone show that.  Indeed the hormones are slowly killing off cancer cells.  That was much more realistic.

So yes. We have a revised plan, and the outcome is marginally affected.  However, like we were told, it could come back regardless, and thats a fact.  If the prostate was removed, he could still get more cancer.

What has changed - the radiotherapy has been brought forward, and the boost dropped.  This has brought back the time frame on hormones from a growing 3.5+ years to 2 years already on countdown.

How on earth can they change his stats at a meeting like that.  Why on earth are they throwing everything but the kitchen sink at a man who is just 52, when she said if he was older they would simply put him on a survailance.  From this point on he will have his PSA checked every year, and if it starts to rise again, hormones for a year, and off, etc.  There wont be 10 years worth of growth, just 12 months.   Because regardless, if he had all the radiotherapy (which lets be frank is just the boost and 3 sessions) and it did come back the approach will be exactly the same. 

The side effects of hormones have been unbearable because the goal posts were moved. The side effects of radiotherapy are also probably worth bringing up.   It could cause long term (life) implications.  Bladder, bowel and ED. So any which way you look at this, its not a fix.  But right now, get rid of the cancer and pick up again ready to fight the next day.  If we hadnt gone in today, there is no way either of us would have been able to fight the next day, it was too long, too long.  Its about quality of life.

So Gleason 8 : T3 N0 M0 - As a diagnosis that's treatable. I am sure what you are receiving is with a view to being curative.

It's going to be a journey - but together it's a shared journey, it's possible he won't get all of the HT/RT side effects.

I have personally gone down the HT/RT route - my scores are Gleason 9 T3a N0 M0 and 20 months down the line I feel amazing - you can read my HT/RT journey ( I had other issues too! ) by clicking on the icon of the beach.

If you want to know more, just ask - if you want any help and advice just ask - we as a Community are here for you both..

I wish you both well on this journey.

Best wishes

Brian.

Hi Q

Well u did get somewhere today I suppose, at least RT will be done starting October, that's good.

Still don't understand why they r saying T3 Gleeson 8 when there doesn't seem to be much evidence to back it up.

On the plus side though if they r wrong  and it's T2 Gleeson 7 then a better chance that the RT will sort it.

Perhaps in the future the HT can be stopped at an earlier stage, see how it all goes.

Good luck for October, keep us posted

Best wishes

Dteve

Hi Quitit23

I wonder if the fact that the cost of Abiraterone has gone down significantly this year £2-3k to £60 a month has any bearing on this. It's a very powerful drug and Scotland has been prescribing it for years, I'm amazed that it has been so readily available at the original price. England and Wales are still waiting for it to be fully available now. My partners PSA stopped going down at 9, then having Abiraterone knocked it right down within days. Do you think they are relying on knowing that it will hold it in check for a long while and maybe taking advantage of that. I have to say I'm happy that my partner has had it, though he is supposed to be on it for life. Not ideal with the side effects, I don't mind saying. I guess I don't feel like a carer at this point, because he's 57, but I'm feeling like a caterer/house keeper atm. Possibly a mum?, dear God I've said it. So yes, understanding your frustration at the situation. 

L

Wow I missed this update, before I did my initial reply.  "I admit i am not a nice person" Are you kidding!!!!! You are amazing!

L

I am blow away by this.  No-one apart from hubby has ever said that to me and hes the only person who has been with me for nearly 30 years.

Everyone else just assumes I am really not a nice person.

My hearts in the right place. 

Thank you  

Hello Quitit

its good that the radiotherapy has been brought forward. I know that everybody reacts to it differently but looking back, my husband had minimal side effects - a bit of bloating and a bit of tiredness . I, on the other hand, was besides myself with anxiety and also got very tire from driving and lack of sleep.

my husbands MRI showed the tumour bulging against the prostate wall and they couldn’t be sure whether or not it had spread through or was contained. When they biopsies there were no cancerous cells found outside the prostate but they said that this didn’t mean there weren’t any - just that the tissue samples they had didn’t show any. I queried therefore whether he should be T2 or T3. We were told that they always err on the side of caution and treat at the higher level if there is any doubt. Perhaps this explains the difference in grading for your husband?

I also wonder whether they are treating your husband aggressively with hormones because he is relatively young? I don’t know enough about the different treatment pathways , though, so this is mere speculation on my behalf.

I don’t think that at the stages our husbands are now at that the medics can give any guarantees. They are treating my husband with the intention of cure but my big

 fear is that this won’t be achieved. We  ( me and husband)have discussed this and said that if a cure is not possible we can hope that, at least, it will hopefully buy us time. I just don’t want too much of that time marred by HT unnecessarily. But I don’t want HT to be stopped too early and prevent the cure. It seems a fine balance.

it does sound, though, as if you are in a better place today? I hope so! This darned cancer sure does play havoc with our emotions, doesn’t it?