Post 55: PSA 505. Ouch!
What do I think when I hear my PSA is now over 500?
Honestly—not much. Not while I’m in this strange medical limbo. I know it’ll keep climbing until chemo restarts, and even then, it might not come down easily.
But what’s a sensible PSA level anyway? Who knows anymore.
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Before Brunch… A Call
Just before heading out with My Darling and my youngest for brunch at the local Wetherspoons, I got a call from my cancer specialist nurse. She was responding to an email I’d sent with a list of questions for my oncologist—questions I couldn’t have dreamt up on my own.
I’d fed all my details into an AI tool, explained my situation, and it spat out something quite brilliant. A list of questions to ask before this thing gets ahead of me. Because let’s face it: if I don’t ask, no one else will.
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Priority Questions for the Oncology Team
1. MRI Results & Disease Status
• What did the recent MRI from the far-away-hospital show?
• Are there signs of worsening or new metastases that align with the rising PSA?
2. Urgent Treatment Planning
• With PSA now over 500 and multiple previous treatments exhausted, what are the next immediate treatment options?
• Can Carboplatin safely resume soon — or should we be considering other less cardiotoxic treatments like enzalutamide or apalutamide?
• Is there a possibility the cancer has evolved (e.g., neuroendocrine features) that would require a different chemo approach?
• Would a re-biopsy be useful to confirm this and better guide treatment?
3. BRCA2 / CHEK2-Directed Care
• Are there alternative or second-line PARP inhibitor strategies (e.g., talazoparib, combination approaches) available now that olaparib has failed?
• Are there clinical trials for BRCA2/DDR mutation carriers that might be accessible via my local, the larger, or far-away hospital?
4. Cardio-Oncology Coordination
• Is it possible to escalate or request external cardio-oncology input, perhaps from a bigger hospital or the far-away-one, to clear the way for cancer treatment to safely continue?
• Can oncology help coordinate a cardiology assessment plan specifically for chemotherapy clearance and anticoagulation monitoring?
5. Monitoring & Follow-Up
• While treatment is on hold, how often should PSA and imaging be repeated?
• Is there a system in place to fast-track decisions or escalate care if PSA continues to rise or symptoms worsen?
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No way I could have written all that unaided. But it shows how powerful self-advocacy can be—especially when you’ve got tools, and time, and a bit of desperation.
Now I wait. D-day is Friday. That’s when I find out if Cardiology will green-light my return to Carboplatin. First, we have to address the palpitations and the AFib. Then—hopefully—back to fighting.
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Birthday… and a wee bit of Normal
After the call, we headed out for grub. I wasn’t massively hungry (saving space for curry later), so I settled for a breakfast wrap. But the call was still buzzing around my head, so my youngest got the full verbal dump whether he wanted it or not.
To his credit, he listened—really listened—and asked good questions. That meant a lot.
Still, it’s hard to get a medically free day these days, even when it’s both my birthday and our anniversary. Why is everything so relentless right now?
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Garden Centres & Growing Tall
We’d been meaning to use an ancient garden centre voucher—so long ago, I forgot who gave it to us. Still valid for 32 months, apparently.
First stop? No six-foot canes, but we did grab a bottle of Prosecco spotted by My Darling and (yes) I found that sticky marmalade cake I had weeks back. Tempting, but I resisted. The heart can only take so much.
The second garden centre did have the right gear—six-foot canes and a couple of grow bags. Now the sunflowers can finally get on with it. Jack and his beanstalk would be proud.
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The Battle of the 60” Beast
Once home, the youngest got roped into swapping out the old 55” TV for a shiny new 60” beast. My Darling won’t let me lift a finger, so he was our willing(ish) muscle.
It looks great—massive—but beautiful. Then came the set-up nightmare. Apps, passwords, subscriptions… frustration mounting. I lost it trying to screen-share my phone. My Darling tried. No dice.
Our son walked in, did it in five seconds.
Turns out: VIDAA TVs don’t talk to iPhones. Only Androids.
Brilliant.
The workaround? Buy a 4K Fire Stick. Whatever that is. Happy Birthday to me.
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Curry and Calm
After that fiasco, we headed back out for a curry—the same restaurant we’ve booked for My Darling’s birthday bash in October. Tonight though, just the three of us.
I’ll spare you the full menu rundown, but it was excellent, and the Monday deal made it even sweeter. Another small win.
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…And Then
Just as I was settling in… ectopics at 11:30pm.
Oh no.
A&E? Again?
Please no. Not tonight.
Not on my birthday.
I take the pill in pocket and hope for the best.
Not again surely…
I was triaged at 1:30AM in A&E and here’s goes another night without beauty sleep.
