Finally Posting an Intro

User

Posted 07 Sep 2021 at 16:05

Hi All

I've been lurking on this site for some time - reading posts yet not feeling able to jump in myself - no idea why because I do not think I would have coped without reading the advice given on her and listening to peoples stories of their cancer journey. My husband is not good and researching at all - he get terrified and depressed so has always asked me to look into things for him - which means I know more than he does, and at times I feel I worry even more than he does ....without showing it of course.

My husband (57yrs) was diagnosed last January 2020 with prostate cancer after a well man blood test that showed his PSA was 86 in Oct 2019 and had risen to 94 in January 2020 when he had another blood test. After a prostatectomy his pathology was 4 + 3; PT3b pnx. His PSA, 12 weeks after the operation in May 2020 was 1.5 which rose to 2.0 in June. A scan showed his bones were clear but one pelvic lymph node affected so he had 33 sessions of salvage radiotherapy that June.

His next PSA reading October 2020 was 0.2, then January 2021: 0.5, March 2021: 0.8; May 2021: 1.1 and the Consultant has just rung this afternoon to say is PSA is now 1.6. The plan is to do another PSA in December and rescan in the new year with the option of SABR if/when three or less spots show up or if more - Hormone therapy and chemo.

So relieved I've finally posted an intro and a post - I don't know why it has taken me so long !!

CurrantCottage

User

Posted 07 Sep 2021 at 23:55

Hi Currant, well done on coming out of the shadows! Are they putting him on the HT now or waiting until after the next PSA test in the hope of being able to spot something? Did he have HT before / during the salvage RT? If you have been lurking for a while, you are probably aware that a post-op PSA of 1.5 suggests there was more than just the one problem lymph node - have you read up on or been advised of micromets - tiny clusters of cancer that are spread around the body but are too small to spot on scans?

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

User

Posted 08 Sep 2021 at 07:43

Hi Lynn

Thank you for the welcome - it’s nice to be able to post - not sure why I waited so long 🤣. He didn’t have HT with the radiotherapy - I wish I had been brave enough to ask why not ….but I didn’t, because I read that was often felt the best option. He had swapped by then from using the NHS to his works Bupa scheme in order to get his operation quicker (this was when covid was first making itself known) - the consultant for that part was friendly and informative but the oncologist he has subsequently been passed to isn’t as communicative. He has mentioned “little spots” of cancer and my husband doesn’t ask more aside from “will it cure me” - I’ve read up on micromets but maybe the oncologist would be more forthcoming if my husband wasn’t as anxious - I’m different, I always need to know all the details going !! He’s currently not on anything - it’s the wait for the PSA to rise enough to show the micro mets up somewhere in a PSMA gallium scan. He did have a scan ….think it might have been 6 months ago (it’s on my profile but I can’t remember!!) and that was clear which isn’t surprising as they would have been to small to show up. It’s just waiting isn’t it, always waiting !

User

Posted 08 Sep 2021 at 16:20

Thanks for posting, it seems everyone who get diagnosed seems to be offered different treatment paths. I’m 54 and was diagnosed last October with a PSA of 383 and a Gleeson of 9 (4+5). At no time have I been offered a prostatectomy, just immediately put on H/T, given a course of radiotherapy as there was spread to local lymph nodes and a 2.5cm tumour outside the Prostate.

We all just trust our Doctor to offer the best course of action, but I can sympathise with your husband as most consultations just go by in blur. My wife has been allowed to go to one and I’ve now started recording them on my phone so we can both listen back and emailing any further questions in a day or so later.

My PSA has currently dropped to below 0.1 but the anxiety is kicking in again as next week is the 3 month check-up.

Best wishes to you husband, keep smiling, keep positive and just try and enjoy every day.

Regards

Stuart

User

Posted 08 Sep 2021 at 20:29

Thank you so much for your reply and encouraging words. Treatment is so very varied between everyone I’ve spoken to and again each individual reacts differently to the various treatments available - like you say we do have to trust our Doctors and Consultants. The last couple of appointments were over the phone so I could listen in, but I like the idea of my husband recording the “in person” appointments as he tends to panic and forget what is said then feels annoyed with himself - the initial Consultant was lovely and great with communications and expected me to be accompanying my husband to the appointments it was a shame when we had to move on to someone else!

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