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Back 9 years after initial diagnosis

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User
Posted 10 Mar 2023 at 14:09

FRIDAY 10th March 2023... just over 9 years ago (in 2014) I posted for the first time.

The latest... my husband went for a TURP procedure on 15.9.22 as he was finding it increasingly difficult to pass urine. We were not aware that they would be taking a biopsy and have since found out that it is routine to do so. We were therefore totally unprepared to receive a phone call at home just over 2 weeks later from the urology department (while our 3 children were in the adjacent room) to be told that Steve's cancer was back, very aggressive and rare... total shock and devastation all over again. The reason I have not posted for so long is because since 2015 Steve's cancer was managed with hormone treatment for 3 years and his PSA level has always been below 1 and so we had no cause to be unduly concerned. It is currently 0.64 and so we just can't understand how it can be back so aggressively.

Since then we have had an almost 6 month agonising wait for CT, bone and PET scans to be done before finally being seen this week on Monday 6th March.

CT and bone scan results showed no evidence of metastases

PSMA PET scan showed uptake in the prostate with lymph node metastases.

He was immediately put back on hormone therapy and had his first LHRH hormone injection on 20.1.23. We are now wondering why he has not had hormone treatment for 6 years and they have just relied on his low PSA score.

He is due to start taking Apalutamide in 3 weeks time but it has some concerning side affects... how have others taking this medication been affected by it?

In our meeting on Monday, we asked for some kind of prognosis which they seemed reluctant to give but the things that stood out most were the concern as to why his PSA score of 0.64 could be so low with a Gleason score of 10 and the mention of 'quality of life' consideration. Basically, we feel in the dark, very anxious, have no understanding of how serious this could be and how much time we might have. They did however say that we should never have received that news over the phone at home and they would making a complaint to the urology department on our behalf.

Does anyone else have any experience of a similar situation that they could shed some light on for us? Thank you for reading and thank you for all the support that this online community provides.

User
Posted 10 Mar 2023 at 16:26
Sorry that you got this news over the phone. In terms of your questions, it seems that your husband has developed a new prostate cancer - possibly some left over from the RT / HT all those years ago but more likely a completely different one. There are some very rare prostate cancers that do not produce PSA - when you get the diagnosis letter, you should be able to see which type he has. My guess is that it is small cell or large cell cancer, which sometimes develops in men who have had HT previously. These are both difficult to treat because they don't usually respond to normal hormone treatment.

Although his PCa was locally advanced in 2015, he was offered radical RT with curative intent. Men do not stay on HT for life after curative RT - it would have a significant impact on quality of life for no apparent benefit. Also, HT would not have prevented small cell / large cell cancer from developing.

How serious the situation is depends very much on which rare PCa they have found and how he responds to the apalutimide & HT injections - I don't think they are being deliberately evasive, they just can't tell you how long he might have.

Did they talk about possibly doing chemo?

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

User
Posted 10 Mar 2023 at 18:15

Hi Miss,

I'm sorry to read about your news - I can't answer about the other aspects of your husband's case, but my dad has been on apalutamide for the past 6 months (4 tablets a day), along with hormone injections every 3 months - he has tolerated it relatively well. He has since suffered from some dry skin (itching) and on-off depression, but nothing much more apart from that. Hope this helps, and I do hope the apalutamide is helpful! It's supposed to be v effective.

Best wishes to you.

Wd

 

User
Posted 11 Mar 2023 at 12:57

"Do you know how long he is likely to be on Apalutamide?"

Miss, apalutimide is a very new drug and tends to be given to men who are incurable. They will stay on HT with apalutimide until it stops working. Apalutimide is usually an alternative to chemo, not as well as - your dad's situation is slightly different in that he possibly has a type of cancer that will not respond to HT.

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

User
Posted 12 Mar 2023 at 15:00
Okay - if he does have small cell or large cell PCa, it will be worth asking the apalutimide nurse how they are planning to monitor whether the treatment is working. As HT does not generally work on small cell / large cell and the PSA cannot be relied upon, it might be that he needs regular scans.

Also, there is no evidence yet to say whether apalutimide is effective on small cell / large cell but there is an ongoing trial in America of apalutimide in conjunction with another drug - it might be worth asking whether your husband is being put on some kind of trial.

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

User
Posted 12 Mar 2023 at 18:18
He may not have small cell PCa or large cell PCA but they are the two rare types of cancer that don't produce PSA - you said that the doctors told you it was a rare type and possibly a neuroendocrine cancer?

I wasn't suggesting that you ask whether there are trials available - I think you might want to clarify whether they are trialling apalutimide on him.

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

User
Posted 13 Mar 2023 at 16:11

Surely no one can be put on a trial without having given written informed consent

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User
Posted 10 Mar 2023 at 16:26
Sorry that you got this news over the phone. In terms of your questions, it seems that your husband has developed a new prostate cancer - possibly some left over from the RT / HT all those years ago but more likely a completely different one. There are some very rare prostate cancers that do not produce PSA - when you get the diagnosis letter, you should be able to see which type he has. My guess is that it is small cell or large cell cancer, which sometimes develops in men who have had HT previously. These are both difficult to treat because they don't usually respond to normal hormone treatment.

Although his PCa was locally advanced in 2015, he was offered radical RT with curative intent. Men do not stay on HT for life after curative RT - it would have a significant impact on quality of life for no apparent benefit. Also, HT would not have prevented small cell / large cell cancer from developing.

How serious the situation is depends very much on which rare PCa they have found and how he responds to the apalutimide & HT injections - I don't think they are being deliberately evasive, they just can't tell you how long he might have.

Did they talk about possibly doing chemo?

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

User
Posted 10 Mar 2023 at 16:37

Thank you so much for your reply and all the information and advice in it. No they didn't offer chemo but we feel it is a question we need to ask and didn't at Monday's meeting. Thank you again for helping to make things a bit clearer for us.

User
Posted 10 Mar 2023 at 18:15

Hi Miss,

I'm sorry to read about your news - I can't answer about the other aspects of your husband's case, but my dad has been on apalutamide for the past 6 months (4 tablets a day), along with hormone injections every 3 months - he has tolerated it relatively well. He has since suffered from some dry skin (itching) and on-off depression, but nothing much more apart from that. Hope this helps, and I do hope the apalutamide is helpful! It's supposed to be v effective.

Best wishes to you.

Wd

 

User
Posted 11 Mar 2023 at 08:44

Thank you very much for your post. I'm glad your Dad has tolerated it relatively well... his treatment sounds the same as my husbands. Do you know how long he is likely to be on Apalutamide? Do you mind me asking if he was offered chemo as part of his treatment?

Very best wishes to you and your Dad

User
Posted 11 Mar 2023 at 12:57

"Do you know how long he is likely to be on Apalutamide?"

Miss, apalutimide is a very new drug and tends to be given to men who are incurable. They will stay on HT with apalutimide until it stops working. Apalutimide is usually an alternative to chemo, not as well as - your dad's situation is slightly different in that he possibly has a type of cancer that will not respond to HT.

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

User
Posted 12 Mar 2023 at 08:34

Thank you for the information. I did wonder if it was a relatively new drug and also that chemo would not be needed as well. My husband is actually having a meeting with an Apalutamide nurse on Tuesday that will talk him through everything to do with the drug so hopefully we will know a bit more then. Many thanks.

User
Posted 12 Mar 2023 at 15:00
Okay - if he does have small cell or large cell PCa, it will be worth asking the apalutimide nurse how they are planning to monitor whether the treatment is working. As HT does not generally work on small cell / large cell and the PSA cannot be relied upon, it might be that he needs regular scans.

Also, there is no evidence yet to say whether apalutimide is effective on small cell / large cell but there is an ongoing trial in America of apalutimide in conjunction with another drug - it might be worth asking whether your husband is being put on some kind of trial.

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

User
Posted 12 Mar 2023 at 17:42

He has been told that he will have a CT scan every 3 months. My problem with that is that the CT scan did not pick up the spread to lymph nodes, it was the PET scan that did... so I don't really understand how that's going to work... another question to ask. To be fair I did ask it but I didn't really understand the answer we were given but thought that they must know what they're doing!

I'm afraid I don't know what small cell or large cell PCa is... that's new to me. And yes, we will definitely ask if there is any trial available.

Many thanks again.

User
Posted 12 Mar 2023 at 18:18
He may not have small cell PCa or large cell PCA but they are the two rare types of cancer that don't produce PSA - you said that the doctors told you it was a rare type and possibly a neuroendocrine cancer?

I wasn't suggesting that you ask whether there are trials available - I think you might want to clarify whether they are trialling apalutimide on him.

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

User
Posted 12 Mar 2023 at 18:31

Oh ok... that makes sense. Thank you.

User
Posted 13 Mar 2023 at 16:11

Surely no one can be put on a trial without having given written informed consent

 
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