No. Prostate Cancer is not the “good one”

Your message resonates deeply—raw, honest, and painfully familiar. You’ve spent your career doing what so many claim but so few truly embody: advocating, listening, showing up, even when the system made that hard. Hospice isn’t just a job; it’s soul work. And now, being on the other side of the bedrail, you're seeing with even sharper clarity how rare true compassion really is.

You’re right—compassion can’t be taught. It’s either in the marrow or it isn’t. And when you’re vulnerable—stripped down, literally and metaphorically—what you need most is not a protocol, but a person. Someone who sees you, not just a diagnosis code or a treatment template.

It’s maddening to realize that after decades of giving, you have to hope that the caregiver assigned to you remembers you’re human. That you’re not “progressing” through a flowchart, but through fear, pain, and the intimate unraveling of what once felt solid.

Thank you for sharing this—your grief, your truth, your demand for something better. If there’s one thing you’re still teaching, it’s that real care doesn’t come from efficiency or metrics. It comes from presence, from recognizing that every chart has a soul behind it. You deserved that. Still do. Always.

Mik, thanks for your service to Cancer people . I very much mean it ! You have done well ....for so many . Im very proud of you ! Knowing your out there , is reassuring !

I've commented before on the various times I heard "oh, that's the good one" and how that irritated me to no end, so I am glad to see your essay here. On another occasion though, I got upset at a very close friend and my wife told me I was being slightly irrational. Here's the background: At the age of 70, I had my radical prostatectomy, supposably nerve sparing. I didn't keep that a secret. At the age of 71.5 my doctor said apparently the nerves weren't spared and I was likely to be impotent for the rest of my days. I use Trimix which does work, but it is a far cry from impromptu lovemaking. This is not something one announces in his social circles so I did keep this a secret.
Months ago, when out with several couples who are very close friends, my wife decided to have a third glass of wine, something she rarely treats herself to. One of the other wives leans over and announces loudly, "looks like you're getting lucky tonight," creating the normal chuckles all around the table. Now, all of these friends knew I had prostate cancer and that I had it removed. This comment and chuckling signaled to me that not one of them had taken the time to do any research on what the likely side effects of prostate removal were. My wife sided with them, basically saying "forgive them for they know not what they do". But if I made a comment about breasts to a woman who just had a mastectomy, I would be out of line. So why am I upset about this? I think friends and relatives say all the right things when they first hear of your cancer story, like "let me know what I can do to help". But when the best thing they could do is listen about what is happening to your body and psyche, that becomes TMI and it grinds to a halt. Ignorance is bliss and many people want to stay blissful.

We may well have been guilty of previously saying that ourselves too as our fathers and brother in law died with prostate cancer and not from it, however, that changed once we knew what type my husband has. We have obviously stopped saying 'It's the best cancer to get' now we have a more thorough knowledge of it. We hope the UK government will introduce universal test screening for PC for men once they are 50, or earlier if they are in a higher risk group. My husband had to demand tests as he didn't have symptoms and wasn't warned that 5 was high for his age of 63 at that time. A year later he demanded another test (still no symptoms) and it had risen to 12. Thankfully he was rushed through the system then, but it was still to late to stop the spread by the time he had his RALP and we now know he has aggressive Cribriform prostate cancer. To date we haven't been able to find someone else with cribriform to compare treatment plans etc which is unfortunate especially as it's a relatively new (in cancer terms) diagnosis. I'm glad I've found this site and will have a good read through the posts.

Hi @cher60

While others get tidy little acinar glands and a pat on the back, I get the architectural equivalent of Swiss cheese, microscopic structures so dysfunctional, even pathologists raise an eyebrow. Apparently, cribriform cells are the overachievers of malignancy. They don’t just grow. They infiltrate. Quietly. Methodically. Like a tax audit with a scalpel.

So yes, I have cribriform cells. They’re the cancer cells with a LinkedIn profile; well-connected, structurally ambitious, and deeply uninterested in boundaries. Gleason 3+4, they say. But let’s not pretend the “4” is some misunderstood rebel. It’s the one picking locks and leaving notes on the nerve fibers.

Still, I manage. I even pretend, occasionally, that I’m doing fine. I mourn the man I once was, a blissfully ignorant soul with testosterone and no idea what a perineural invasion was. Thanks to ADT and radiation, that man now only exists in memories and loose-fitting underwear. But with the help of my psychiatrist wife (and a clinically strategic level of denial), I maintain just enough delusion to get through breakfast.

After all, if this is the “good cancer,” I’d hate to meet the bad one at a cocktail party.

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 👍

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