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No. Prostate Cancer is not the “good one”
Prostate Cancer | Last Active: 19 hours ago | Replies (57)Comment receiving replies
Hi Hans, thanks for your reply and I do like your humour too. We try to remain as positive as we can be on the rollercoaster we are all taking part in.
I didn’t know about the perineurial invasion. They cannot find any cribriform in my husbands pelvis (but it’s not to say it’s not there). His only metastatis to date was found in his 10th rib on his back (we do know cribriform metastasises at distant locations). The oncologist told us yesterday that she expects it to pop up in more than one location this time.
He currently doesn’t want to take hormone therapy because he only went on it last August as no scan could locate the metastatis but she said sometimes hormones give a ‘flare up’ which is exactly what happened to him.
He had the 3 month injection but felt so ill throughout that he really doesn’t want to go on it again until he has to. She has said she will try him on a new hormone next time which is a daily tablet relugolix when he does need it again. It’s taken him 8 months to recover from the injection and he now has more vigour again and his sex drive has returned too! He had recovered so well post RALP that it was a huge surprise to be told his Gleason had been upgraded to 4+3 and was now the aggressive cribriform.
Can I ask you when you were diagnosed with it too? I know the stats aren’t good for Cribriform and just hope that as our oncologist is quite proactive we can be ‘on it’ so to speak as soon as we find another metastatis. Unfortunately he doesn’t react to the radioactive material in PETCT scans, which didn’t help locate it last year.
He had 3 doses of SABR radiotherapy for his rib which seems to have done the trick there so far, but if it pops up in more than 3 locations together they’ll not be able to do SABR next time, so we’ll just have to wait and see the results of his next batch of scans when his PSA rises to about 10 again which she thinks will be in the next 2 months.
I’m new to this site so haven’t had time to read through everyone’s posts yet, but am pleased to have finally connected with someone else with Cribriform as it helps to chat.
Thanks again 👍
Replies to "Hi Hans, thanks for your reply and I do like your humour too. We try to..."
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Hi @cher60,
Thanks for the reply, and yes, the rollercoaster image is spot on, though I’d argue mine feels more like being strapped to the front of the train, blindfolded, with the brakes cut.
Cribriform, as you know, isn't the friendliest of patterns; it's like the party guest that shows up late, drinks all your wine, and leaves behind a mess and a police report. In my case, it showed up in 7 of 12 biopsy cores, Gleason 3+4=7 (but with the cribriform pushing it into a more sinister tier). Perineural invasion was present as well, like a bonus feature you didn’t want.
That said, scans (CT, bone, and a PSMA PET in April) showed no detectable metastases, which, as you rightly note, doesn’t mean they’re not lurking microscopically like sleeper agents. But as far as medical optimism goes, I was told that the full trifecta (brachytherapy (done Feb 27), 6 months of Firmagon (ongoing), and EBRT (just completed)) gives a strong chance of sterilizing what’s inside. Apparently, the cancer was "contained,” at least to the imaging eye. Whether it got an early boarding pass out of the pelvis remains unknown.
Your husband's story resonates. The initial optimism after surgery, the upgrade to 4+3, the shock of cribriform, the miserable dance with ADT. Firmagon hasn’t been gentle with me either, but I’ve committed to 18 months, assuming the heart holds up. That’s where things get complicated; suppressing testosterone in someone with a low-T baseline may not be the panacea they sell it as, and yes, I’ve raised the same question with my oncologist about whether we might be fueling resistance or worse.
Relugolix might be a better option for your husband when the time comes - less cardiovascular baggage, and a quicker off-ramp if needed. But I get his reluctance. This stuff knocks the life out of you so effectively that it’s hard to tell what’s helping and what’s just punishing you into submission.
SABR sounds promising for the rib, and it’s good his oncologist is proactive; we need people on this who don’t just read the protocol and shrug. The trouble is, cribriform doesn’t always follow the script, and we end up managing probabilities more than outcomes.
Let’s hope the next scans are boring (the best kind), but in the meantime, yes, glad we connected. Not many of us with cribriform seem to cross paths online. Misery doesn’t love company, but it sure appreciates solidarity.
Best,
Hans