It's back and the genetic thing.

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

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. 

Hi Pete

Always nervous times waiting for results and appointments with your onco's,I have an over the phone appointment this afternoon,hope everything goes well for you.

Regards Phil 

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.

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. 

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). 

My latest  PSA is 6.7 - a very significant increase in about 8 months. I am seeing the oncologist next Tuesday 30th July who will also have the results of the PSMA scan (earlier CT and bone scans were clear).

I'll update after my appointment on 30th July (next Tuesday). I suspect HT treatment of some sort will be on the table as it were.

So saw my new oncologist for the first time this morning. I was primed for bad news given that the sharp rise in PSA indicates that the thing is out of its box again. Could have been worse to be fair. Some evidence of a spot on my left hip (not painful to be honest) and some activity in what's left of my prostate. Interestingly I've been having some back pain over the last six months or so but, as yet, no evidence of spread there.

Treatment plan is six monthly hormone injections. 2 weeks before the first injection I am to start a course of bicalutamide. I forgot to ask him what the injections were called. There is the possibility of them adding in another tablet further down the line.

Potential side effects look pretty scary although I recognise not everybody gets every side effect. I could trip over, break my leg and have a heart attack at the same time. Joking aside, it's a fairly strict regime. I have to be monitored every month with a PSA test, blood pressure etc etc. It's been advised that I take my blood pressure regularly with my home machine and keep a record. I have also invested in a new thermometer. I have to go to the hospital to get the pills which will be issued when I go for my monthly check up.

I will report my experience with Apalutamide. I enter this new regime with a bit of trepidation.