Terminal Diagnosis I don't understand

User

Posted 27 Feb 2022 at 00:36

Hello,

My name is Maureen and I have just joined this forum. I was hoping for some advice please.

My husband of 73 had a PSA blood test done in March 2021 and it came back to say his PSA was 52. He had a Biopsy which confirmed he had prostate cancer, Gleeson Score of 8, Grade 4. He then had a CT scan and bone scan and both came back clear. In April 2021 they put him on 3 monthly Decapeptyl 11.25mg hormone injections After his 4th hormone injection they checked his PSA and it had come down to 29, which I thought was good (in my ignorance). The consultant said it wasn't and that he had been hoping to see it come down to 0. After another 3 months and his 5th injection his PSA had gone up to 54. The urologist consultant then referred us onto Oncology.

Last week we received a phone call from the Oncology Consultant to say that as my husband wasn't responding to the hormone treatment, there wasn't anything else they could do and gave us a diagnosis of 12 months for him to live. He said there were two drugs that were an option, but he didn't feel it was worth my husband suffering the side effects when it was highly likely they wouldn't do anything. They were Abiraterone Acetate and Enzalutamide. I asked about radiotherapy and chemotherapy but, again, he said it wouldn't cure the cancer and would cause him bad side effects. He was adamant the cancer couldn't be cured and at best they could give him a bit more time, but his quality of life wouldn't be so good.

He said it was about having quality of life over quantity. I said but the cancer is contained within the prostate and hadn't spread, to which he replied that it would have spread by now.

None of this makes logical sense to me and I have asked for a face to face meeting with him to query everything he has said. We have this meeting with him on Monday, 28th February 2022.

I am still reeling from this news and cannot accept there is nothing they can do.

One more important thing to add is that my husband was diagnosed with Dementia 6 years ago and it is a slow progressive one, which has mainly affected his short term memory and cognitive skills and I am his official carer now. The Oncologist said that he had made these decisions taking into account his dementia, mentioning that treatment would make it worse. He said he was looking at the bigger picture all round for us and expressed that it was better to have shorter quality of life than quantity of life with lots of other problems.

He also has diabetes but this is under control with insulin.

My husband has no outward signs of prostate cancer and is in no pain or discomfort, in fact to look at him, you wouldn't think there was anything wrong, apart from his bad memory.

Something just doesn't seem right to me. Can anyone throw any light onto this or give me some advice or their experience with this. I feel I can't just roll over and accept this diagnosis.

Thank you for reading this, any help would be very much appreciated.

User

Posted 27 Feb 2022 at 10:51

On Monday, ask the oncologist exactly what the original diagnosis was- adenocarcinoma? Was it already advanced outside the prostate? Why has he ruled out changing Decapeptyl to Prostap or Zoladex to see if there is a better response? Or even Stilboestrol which works in a different way? Has a testosterone test been done to see if the decapeptyl has stopped testosterone production effectively? If not, can that be done now before any decision about changing treatment? Enzalutimide/ Abiraterone/ Apalutimide are very very expensive - is the onco ruling these out for your husband based on cost?

I think that many oncos would feel chemo is not appropriate for someone with dementia and it seems that radiotherapy was ruled out at diagnosis. However, a change of hormone treatment should be a reasonable next step unless there is more info that we are not aware of?

If not happy with the answers on Monday, you can ask to be referred for a second opinion.

Edited by member 27 Feb 2022 at 11:12 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2022 at 10:55

Hi Maureen

I’m so sorry to hear what you have to say. I’m not that knowledgeable to comment, however I would certainly want a second opinion. I’m not sure which hospital you use but perhaps ask to be referred to a cancer centre of expertise and speak with an oncologist there.

Wishing you all the best.

Zum

User

Posted 27 Feb 2022 at 10:57

Sorry, just to be clear Maureen - I don't think there is any treatment that could cure him so you are only talking about treatments that might give him a few extra weeks or months.

But my instinct is that the new onco has looked at the medical notes and decided that your OH isn't worth treating - was this the first appointment with him? Have any new scans been arranged?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2022 at 11:01

Hi Maureen, sorry you are here. I really think the dementia is the cause of the decision not to treat the cancer. Not that I have any medical qualification or real knowledge of your situation, but it is a decision broadly speaking that I think is right.

I think there is an assumption that if life expectancy from other causes (co-morbidities) is less than 10 years then treating prostate cancer is not worthwhile.

The fact it has not responded well to HT is already a sign that this may be a tough cancer to fight. So any treatment is going to make what life he has less unpleasant.

Dave

User

Posted 27 Feb 2022 at 15:54

Thank you Zum,

I will ask for a second opinion depending how it goes tomorrow.

Maureen x

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User

Posted 27 Feb 2022 at 10:51

If not happy with the answers on Monday, you can ask to be referred for a second opinion.

Edited by member 27 Feb 2022 at 11:12 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2022 at 10:55

Hi Maureen

Wishing you all the best.

Zum

User

Posted 27 Feb 2022 at 10:57

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2022 at 11:01

I think there is an assumption that if life expectancy from other causes (co-morbidities) is less than 10 years then treating prostate cancer is not worthwhile.

The fact it has not responded well to HT is already a sign that this may be a tough cancer to fight. So any treatment is going to make what life he has less unpleasant.

Dave

User

Posted 27 Feb 2022 at 15:45

Hi Lyn,

Thank you for your reply it has helped to arm me with additional questions to ask the Oncologist tomorrow. It's such a minefield initially and I am trying to gather as much information I can so I can cover as many queries and questions with the oncologist tomorrow. My brother-in-law is coming with me for support. I will record the meeting (with the oncologists knowledge of course) so I can listen back to his answers as it's so hard to digest everything at these meetings.

In a way it's a godsend my husband is oblivious to what is going on. I do tell him everything, but within 10 minutes or so he has completely forgotten. I never thought I would see Dementia as a positive. Obviously he will be with me tomorrow and I will have to remind him why we're going to the hospital. He will understand what it's all about in 'the moment', but he will have forgotten by the time we get home.

I have been reading a lot about Prostate Cancer today and can see that the side effects of radiotherapy, the other two drugs mentioned before will no doubts have a profound effect on him. As well as his Dementia (Mixed Alzeimers/Vascual Dementia) he has Diabetes and High Blood Pressure.

I know I am probably clutching at straws, but I feel I need clarification and more understanding about why it is better to let 'nature take it's course' so to speak, than to try and put the breaks on this cancer to give him more time. It's the side effects of further treatment which I feel the Oncologist is talking about and is not worth putting him through it and better he has a better quality of life even if not so long with treatment.

I have to fight for him on his behalf, as I know he would have done for me, prior to his dementia. We have been together 40 years and I can't go forward without overturning every stone there is. Life is hard with his Dementia, but I can't bear the thought of losing him.

I will see how it goes tomorrow and if I feel it necessary I will ask for a second opinion.

Thank you for all your help and advice, so very much appreciated.

Maureen x

User

Posted 27 Feb 2022 at 15:50

Hi Dave,

Thank you for your reply. Sadly I think you maybe right, but I have to be certain before I give up fighting for him.

Maureen x

User

Posted 27 Feb 2022 at 15:54

Thank you Zum,

I will ask for a second opinion depending how it goes tomorrow.

Maureen x

User

Posted 27 Feb 2022 at 15:56

The bit of the story that I think is missing is the decision-making in April 2021. From what you say, they decided back then to only give him treatment that would prolong life a little while - no offer of curative surgery or radiotherapy at the time and it would be helpful to understand why. It is possible that the initial plan had been hormones for 6 months and then curative RT but that the plan had to be changed when his PSA didn't come down? Whatever it was, the decision that he is incurable hasn't just been made now - it was made last April or after the 4th injection.

It is true that enza, abi and apalutimide can make memory problems worse but the same can be said of decapeptyl and its equivalents so not an argument for not trying.

Is he already on metformin for his diabetes?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2022 at 18:27

Hi Lyn,

Yes he is on metformIn for his diabetes and insulin.

There was no mention from the oncologist back in April 2021 about not being able to cure the cancer. They put him on Decapeptyl to bring his PSA reading down. It was a case of waiting to see how he responded.

You know you are right the decision must have been made after his 4th injection. I definitely need answers tomorrow.

He's had bladder cancer before, but has been in remission now for 4 years.

Thank you again for your reply.

Maureen x

Edited by member 27 Feb 2022 at 18:29 | Reason: Not specified

User

Posted 27 Feb 2022 at 19:45

I think you have missed my point - Decapeptyl is not a curative treatment; it could only ever have controlled the cancer for a while. The decision seems to have been made last April so ask why - if it was known to be in his lymph nodes perhaps or was known to be one of the rare and more aggressive types of prostate cancer that don't respond to hormone therapy.

Edited by member 27 Feb 2022 at 23:46 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2022 at 20:56

Hi Lyn,

When we were referred to the Urologist in April 2021 he arranged CT and MRI Scans and a Bone Scan. They all came back negative and that the cancer was confined to the prostate. After being on Decapaptyl for 9 months and his PSA rising again to 54 (initial reading was 52), the Urologist Consultant sent a letter to the Oncologist Consultant explaining that my husband wasn't responding to the hormone injections and asking him to speak to us about what he thought could be done going forward. The Urologist suggested in his letter that maybe Radiotheraphy could be considered or the addition of other medication (Abiraterone or Enzalutamide).

For reasons I do not fully understand yet, the Oncologist advised us over the phone last week that there was nothing else they could do because of the side effects on my husband, given his dementia.

Hence I have pushed for a face to face meeting with him tomorrow where I am expecting him to explain to me in laymans terms the reason for his decision.

Just to add that at no time was it ever explained to us that it wasn't curable and could only be slowed down with the Decapaptyl. It was my understanding that if the hormone treatment bought the PSA down to 0 then that was all that needed to be done.

Maureen x

Edited by member 27 Feb 2022 at 21:01 | Reason: Not specified

User

Posted 28 Feb 2022 at 10:18

Hope it goes well for you both today Maureen.

Zum

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