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It's back and the genetic thing.

User
Posted 02 Feb 2024 at 16:18

My treatment history is in my recently updated profile but a recap is diagnosis in December 2015 (Gleason 7 - [4+3]). Treated with Bicalutamide and EBRT at Clatterbridge early 2016. All good until late 2019 when PSA rose to 3 ng (after a succession of small increases). Bone and CT scans clear but a PET scan revealed 3 mets in the lymph nodes in the abdominal area. 2 years Bicalutamide and 9 sessions of SABR radio therapy.

Fast forward to January this year. Blood test carried out in December showed PSA up to 2.7 ng (a series of steady increases since stopping the Bicalutamide in early 2022). I await the results of bone and CT scans.

Now for the genetic bit. The nurse who gave me the bad news mentioned that my new oncologist (I think the previous one has retired) has looked at the family history and was talking about genetic testing. I'm not clear if this is to guide treatment or research - either way I'll comply if they want me to do it.

The history is as follows:

Dad - died of Pca aged 57 in 1971

Older brother died of Pca age 80 in June last year

Me

Younger brother just diagnosed with Pca age 71

I've always thought the disease was largely genetic but, I gather, I might be wrong. Anyway - round 3 with this cursed thing awaits.

 

User
Posted 02 Feb 2024 at 17:05

Hi Pete

According to our site:

My father had prostate cancer. What are my risks?

You are two and a half times more likely to get prostate cancer if your father or brother has had it, compared to a man who has no relatives with prostate cancer.

Your chance of getting prostate cancer may be even greater if your father or brother was under 60 when he was diagnosed, or if you have more than one close relative (father or brother) with prostate cancer.

Your risk of getting prostate cancer may also be higher if your mother or sister has had breast cancer or ovarian cancer.

My dad died with it aged 88 years. My younger brother was diagnosed with it at 60 years. I dread passing it onto my two middle aged sons.

Adrian

 

Edited by member 02 Feb 2024 at 17:13  | Reason: Spellling

User
Posted 03 Feb 2024 at 19:35
Only 5-10% of prostate cancers are thought to be genetic - the familial pattern tends to be environmental rather than down to genes.

For those who do have one of the BRCA gene mutations, one of the PARP inhibitors can be offered later down the line once other treatments have failed. For example, Olaparib is suitable for men with BRCA1 or 2 who have become castrate-resistant, have mets and have already had abiraterone or enzalutimide.

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

User
Posted 06 Mar 2024 at 16:54
Quote:

 

On the genetic thing, the oncologist will look into it - there is some sort of arrangement with Liverpool Women's Hospital and the final decision on whether to proceed with genetic testing rests with them. The key metric seems to be how many family members were diagnosed at under 60 - my father apart - myself and my 2 brothers were diagnosed well over the age of 60.

In a way I think it may be better to not know if you are a brca gene carrier. DH isn’t being offered chemo as he carries the gene. So if we hadn’t found out about it then they’d have given it a go. Apparently it is effective for some with gene. But not many people. But on the other hand you could say it’s a waste of nhs resources trying something that might not work. We didn’t know about the gene when he was diagnosed 9 years ago. Maybe things may have been different had we known. 

User
Posted 02 Feb 2024 at 16:18

My treatment history is in my recently updated profile but a recap is diagnosis in December 2015 (Gleason 7 - [4+3]). Treated with Bicalutamide and EBRT at Clatterbridge early 2016. All good until late 2019 when PSA rose to 3 ng (after a succession of small increases). Bone and CT scans clear but a PET scan revealed 3 mets in the lymph nodes in the abdominal area. 2 years Bicalutamide and 9 sessions of SABR radio therapy.

Fast forward to January this year. Blood test carried out in December showed PSA up to 2.7 ng (a series of steady increases since stopping the Bicalutamide in early 2022). I await the results of bone and CT scans.

Now for the genetic bit. The nurse who gave me the bad news mentioned that my new oncologist (I think the previous one has retired) has looked at the family history and was talking about genetic testing. I'm not clear if this is to guide treatment or research - either way I'll comply if they want me to do it.

The history is as follows:

Dad - died of Pca aged 57 in 1971

Older brother died of Pca age 80 in June last year

Me

Younger brother just diagnosed with Pca age 71

I've always thought the disease was largely genetic but, I gather, I might be wrong. Anyway - round 3 with this cursed thing awaits.

 

User
Posted 03 Feb 2024 at 09:12

Hi all

I had generic test but unfortunately I didn't have the gene so could not have the treatment,I have no family history of pcs and I was diagnosed at 52,I'm hoping that because I do not have the gene my 28 year old son does not have to worry.

Regards Phil 

User
Posted 05 Feb 2024 at 16:07

DH was diagnosed with prostate cancer 9 years ago. He had brachytherapy and psa was 0.01 for many years. His father had prostate cancer, however it was slow growing and he died age 93 not prostate related. DH’s mother had ovarian cancer age 80. She had treatment, it returned when she was 89 the symptoms of which she died of. We didn’t really think of genetics as neither of these are unusual in old age. Then DH’s daughter was diagnosed with breast cancer in her early 30’s. It was caught early and she’s fine, they tested her for the brca gene. She is positive for the brca2 gene. We thought it must be from dh. So he was tested too and was also positive. We have recently found out dh’s prostate cancer is now in his lymph nodes. The prostate is still clear though, which is probably unusual. The next line of treatment at this stage would usually be chemo. but apparently chemo doesn’t work on gene mutations. So dh isn’t being offered it. So he’s on lifelong HT and enzalutamide, he can have olaparib once these drugs stop working. But hopefully HT will keep psa down for many years. 

User
Posted 06 Mar 2024 at 15:37

So, quick update following the recent rise in my PSA and the decision to carry out CT and bone scans. Spoke to my new oncologist this morning over the phone and he advised me that nothing had shown up on either scan. Nevertheless the rise in PSA mirrored my experience in 2020 when a PET scan was ordered and small mets were located in the pelvic area. These were treated with SABR Radiotherapy and 2 years on bicalutamide.

A similar situation has now presented itself again so I have been out forward for another PET scan as, clearly, like in 2020, something is going on.

To be honest I am quite relieved. I was starting to think my luck had finally run out - it may well have but I'll take small so far undetectable mets over something big enough to register on a CT or bone scan.

On the genetic thing, the oncologist will look into it - there is some sort of arrangement with Liverpool Women's Hospital and the final decision on whether to proceed with genetic testing rests with them. The key metric seems to be how many family members were diagnosed at under 60 - my father apart - myself and my 2 brothers were diagnosed well over the age of 60.

The PET scan is likely to take place in 8 to 10 weeks.

User
Posted 06 Mar 2024 at 16:12

Pete, I will be interested to see how you progress with further treatment. I had two lots of SABR treatment to two separate lymph nodes following on from salvage RT five years earlier. 

I changed to the private sector through our insurance company due to possible restrictions on the NHS.

Thanks Chris 

User
Posted 06 Mar 2024 at 17:20

Chris - I will, of course, give an update in due course. SABR is an option depending on where the mets are found (if they are in the same area as before this could be problematic). 

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User
Posted 02 Feb 2024 at 17:05

Hi Pete

According to our site:

My father had prostate cancer. What are my risks?

You are two and a half times more likely to get prostate cancer if your father or brother has had it, compared to a man who has no relatives with prostate cancer.

Your chance of getting prostate cancer may be even greater if your father or brother was under 60 when he was diagnosed, or if you have more than one close relative (father or brother) with prostate cancer.

Your risk of getting prostate cancer may also be higher if your mother or sister has had breast cancer or ovarian cancer.

My dad died with it aged 88 years. My younger brother was diagnosed with it at 60 years. I dread passing it onto my two middle aged sons.

Adrian

 

Edited by member 02 Feb 2024 at 17:13  | Reason: Spellling

User
Posted 03 Feb 2024 at 09:12

Hi all

I had generic test but unfortunately I didn't have the gene so could not have the treatment,I have no family history of pcs and I was diagnosed at 52,I'm hoping that because I do not have the gene my 28 year old son does not have to worry.

Regards Phil 

User
Posted 03 Feb 2024 at 13:13

Thanks for the info Phil. I have read that there are some treatments for people with the specific genetic code. I'll update when I find out more.

User
Posted 03 Feb 2024 at 19:35
Only 5-10% of prostate cancers are thought to be genetic - the familial pattern tends to be environmental rather than down to genes.

For those who do have one of the BRCA gene mutations, one of the PARP inhibitors can be offered later down the line once other treatments have failed. For example, Olaparib is suitable for men with BRCA1 or 2 who have become castrate-resistant, have mets and have already had abiraterone or enzalutimide.

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

User
Posted 05 Feb 2024 at 16:07

DH was diagnosed with prostate cancer 9 years ago. He had brachytherapy and psa was 0.01 for many years. His father had prostate cancer, however it was slow growing and he died age 93 not prostate related. DH’s mother had ovarian cancer age 80. She had treatment, it returned when she was 89 the symptoms of which she died of. We didn’t really think of genetics as neither of these are unusual in old age. Then DH’s daughter was diagnosed with breast cancer in her early 30’s. It was caught early and she’s fine, they tested her for the brca gene. She is positive for the brca2 gene. We thought it must be from dh. So he was tested too and was also positive. We have recently found out dh’s prostate cancer is now in his lymph nodes. The prostate is still clear though, which is probably unusual. The next line of treatment at this stage would usually be chemo. but apparently chemo doesn’t work on gene mutations. So dh isn’t being offered it. So he’s on lifelong HT and enzalutamide, he can have olaparib once these drugs stop working. But hopefully HT will keep psa down for many years. 

User
Posted 06 Mar 2024 at 15:37

So, quick update following the recent rise in my PSA and the decision to carry out CT and bone scans. Spoke to my new oncologist this morning over the phone and he advised me that nothing had shown up on either scan. Nevertheless the rise in PSA mirrored my experience in 2020 when a PET scan was ordered and small mets were located in the pelvic area. These were treated with SABR Radiotherapy and 2 years on bicalutamide.

A similar situation has now presented itself again so I have been out forward for another PET scan as, clearly, like in 2020, something is going on.

To be honest I am quite relieved. I was starting to think my luck had finally run out - it may well have but I'll take small so far undetectable mets over something big enough to register on a CT or bone scan.

On the genetic thing, the oncologist will look into it - there is some sort of arrangement with Liverpool Women's Hospital and the final decision on whether to proceed with genetic testing rests with them. The key metric seems to be how many family members were diagnosed at under 60 - my father apart - myself and my 2 brothers were diagnosed well over the age of 60.

The PET scan is likely to take place in 8 to 10 weeks.

User
Posted 06 Mar 2024 at 16:12

Pete, I will be interested to see how you progress with further treatment. I had two lots of SABR treatment to two separate lymph nodes following on from salvage RT five years earlier. 

I changed to the private sector through our insurance company due to possible restrictions on the NHS.

Thanks Chris 

User
Posted 06 Mar 2024 at 16:54
Quote:

 

On the genetic thing, the oncologist will look into it - there is some sort of arrangement with Liverpool Women's Hospital and the final decision on whether to proceed with genetic testing rests with them. The key metric seems to be how many family members were diagnosed at under 60 - my father apart - myself and my 2 brothers were diagnosed well over the age of 60.

In a way I think it may be better to not know if you are a brca gene carrier. DH isn’t being offered chemo as he carries the gene. So if we hadn’t found out about it then they’d have given it a go. Apparently it is effective for some with gene. But not many people. But on the other hand you could say it’s a waste of nhs resources trying something that might not work. We didn’t know about the gene when he was diagnosed 9 years ago. Maybe things may have been different had we known. 

User
Posted 06 Mar 2024 at 17:20

Chris - I will, of course, give an update in due course. SABR is an option depending on where the mets are found (if they are in the same area as before this could be problematic). 

 
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