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User
Posted 23 Apr 2021 at 12:26

Hello, My husband has recently been diagnosed with advanced prostate cancer, at the age of 67.  We both feel lost as no-one seems to be talking to us to tell us what is going on.  I realise the NHS is under a lot of pressure at the moment, catching up with the backlog post-Covid, but I wondered if anyone has any suggestions of how to best engage with the system during these times.

He was put on hormone therapy immediately following blood test and examination by GP. He has had 3 lots of scans and last week had a biopsy.  We have never seen or talked to a consultant, but he's had a couple of short conversations with a urologist hospital doctor by telephone.  These have been very unsatisfactory as the doctor is difficult to understand and doesn't seem to make any effort to explain anything.  We have a number for the nurse at the Urology Department, but she doesn't always ring back, and again is quite curt and unhelpful.  So far, we have got our information from the copy of the urologist doctor's letter to our GP with test results, which we then have to try to decipher to understand what it means.

We are worried that when the biopsy results come in, we will get another unsatisfactory phone call from the same doctor and will be not much the wiser and not in a good position to make decisions about treatment.  Ideally, what we would like is to sit down face to face with a consultant who can talk us through the options and answer our questions.

Any suggestions would be appreciated. Thank you, and wishing  all of you good outcomes.

User
Posted 23 Apr 2021 at 21:36

Hubby has been put on HT which is usually a prerequisite before RT, the start of more treatment if further advanced, or as a sort of holding treatment for possible surgery that may be delayed in these uncertain times. I see the result of a biopsy is awaited and it is understandable that consultants do not wish to discuss treatment until the results of this have been received and considered because the biopsy may change or limit treatment options. This can result in a delay which is quite usual because the case is normally considered by a Multi Disciplinary Team (MDT). Hubby should then have the results explained to him with the options open to him or suggested treatment plan. Delayed arrival to this point is frustrating but hopefully any questions will be satisfactorily answered at the time.

Edited by member 23 Apr 2021 at 21:44  | Reason: spelling

Barry
User
Posted 24 Apr 2021 at 00:36
Hi Shelagh, I suspect that part of the issue is that with advanced prostate cancer, there aren't really any treatment decisions to make. The fact that your husband was started on hormones before the biopsy had even been done suggests that either his PSA was extremely high and / or the metastases (spread) is significant so the treatment pathway is fairly standard - hormone therapy for the rest of his life, and possibly a tablet called enzalutimide. Pre-pandemic, they may have offered early chemo but because of Covid, the hospitals are allowed to offer enzalutimide instead of chemo - in normal times, enza would be kept back for later down the line when the hormones stop working.

There is some really good information on this website for men who have just been diagnosed with advanced prostate cancer. You can also ring the specialist nurses on the number at the top of the page - they are wonderful.

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

User
Posted 24 Apr 2021 at 01:47

Unfortunately, the tests and scan results sent to your GP have not been posted under your husband's bio, so we don't know the suspicious areas shown on the scans detailed in the letter to his GP along with other information. It is possible that some RT treatment may be given, although as well as HT there may be some other types of systemic treatment offered, either early on or if response calls for it. https://prostatecanceruk.org/prostate-information/treatments/radiotherapy-for-advanced-prostate-cancer

Interested to learn what full diagnosis shows and what if any other treatment is offered.

Edited by member 24 Apr 2021 at 01:48  | Reason: to highlight link

Barry
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User
Posted 23 Apr 2021 at 21:36

Hubby has been put on HT which is usually a prerequisite before RT, the start of more treatment if further advanced, or as a sort of holding treatment for possible surgery that may be delayed in these uncertain times. I see the result of a biopsy is awaited and it is understandable that consultants do not wish to discuss treatment until the results of this have been received and considered because the biopsy may change or limit treatment options. This can result in a delay which is quite usual because the case is normally considered by a Multi Disciplinary Team (MDT). Hubby should then have the results explained to him with the options open to him or suggested treatment plan. Delayed arrival to this point is frustrating but hopefully any questions will be satisfactorily answered at the time.

Edited by member 23 Apr 2021 at 21:44  | Reason: spelling

Barry
User
Posted 24 Apr 2021 at 00:36
Hi Shelagh, I suspect that part of the issue is that with advanced prostate cancer, there aren't really any treatment decisions to make. The fact that your husband was started on hormones before the biopsy had even been done suggests that either his PSA was extremely high and / or the metastases (spread) is significant so the treatment pathway is fairly standard - hormone therapy for the rest of his life, and possibly a tablet called enzalutimide. Pre-pandemic, they may have offered early chemo but because of Covid, the hospitals are allowed to offer enzalutimide instead of chemo - in normal times, enza would be kept back for later down the line when the hormones stop working.

There is some really good information on this website for men who have just been diagnosed with advanced prostate cancer. You can also ring the specialist nurses on the number at the top of the page - they are wonderful.

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

User
Posted 24 Apr 2021 at 01:47

Unfortunately, the tests and scan results sent to your GP have not been posted under your husband's bio, so we don't know the suspicious areas shown on the scans detailed in the letter to his GP along with other information. It is possible that some RT treatment may be given, although as well as HT there may be some other types of systemic treatment offered, either early on or if response calls for it. https://prostatecanceruk.org/prostate-information/treatments/radiotherapy-for-advanced-prostate-cancer

Interested to learn what full diagnosis shows and what if any other treatment is offered.

Edited by member 24 Apr 2021 at 01:48  | Reason: to highlight link

Barry
User
Posted 25 Apr 2021 at 20:00

So sorry to hear your experience. Do read the toolkit available from Prostate Cancer UK. remember you can get a second opinion.

 

 
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