Diagnosis Day. Yay! No.

So, having had my biopsy, and a brief run through of my scans on 25 July, I was back at the hospital on Friday 5 August to get the full run down and discover my fate.

Like the good boy I am, I arrived on time for my 10.40 appointment.  I was eventually seen at 12.00.  Not particularly impressed as I’d already run out of coffee.

In walks Prof X, who heads up the clinic, even though I was hoping to have seen the consultant that did my biopsy.  First off, he asks me about my erections.  What erections, the 150mg daily of Bicalutamide has put paid to those.  Then he asks how I’m peeing.  Better thanks, but not ideal.

“Well,” he declares, “you have a particularly advanced and aggressive form of prostate cancer.  I’m going to put you on the injectable version of your hormone blockers (Decapeptyl) and start you on another type of hormone treatment (Enzalutamide)” and he stresses that it is very expensive.  “Now, I expect you have some questions.”

I mention that I was really rather hoping he’d take me through my scans, so I can better understand my disease, and you know, get the scores on the doors, Gleason etc.

“Oh, I suppose I’d better go and get my laptop then”, he returns with the smallest laptop known to technology, and proceeds to bring up the smallest images of my bone scan.  The disease has already metastasised into my pelvis, spine (right up to my neck), rib cage and collar bones.  I ask about the spread into my lymphs that the consultant mentioned.  “I’ve had a look and I dispute that” is his response.

I ask for my TMN, he says T2 (I think 3) N0 (I think N1) we agree on M1b.  Gleason is 4+5 (9) so grade group 5.

I ask about my prognosis.  He tells me that “things have got better” and “up to 30% of men with this level of cancer live beyond 5 years.”  So, 70% don’t then.  Overall he thinks I’ll mange “probably” 15 years.

“Anyway, I’ll hand you over to one of our specialist nurses, “H” (who I met at my biopsy) and she’ll sort out your appointments etc.”  And off he pops.

H and I have a chat about my post biopsy recovery (numb c*ck and b*alls, very little bleeding).  She’s already got me an appointment for next week to start the Decapeptyl and will refer me to the Enzalutamide clinic to get that sorted.  Meanwhile, my case is being reviewed by the MDT meeting this afternoon, as they need to secure funding for the Enzalutamide, as remember “it is very expensive”.  She’ll call me back with an update later in the afternoon.

She calls me back as promised.  The MDT have overruled the Prof, and feel that given the severity of my disease, chemo is a better option.  I have an appointment in two weeks with Dr H from the Christie to take that forward.  I mention that I wasn’t particularly happy with the Prof’s interpretation of my scans, as it contradicts what he consultant previously told me.  She says she’ll have a look at them and call me back.

She calls me back.  Yes, the disease has entered my seminal vesicles, so T3b, and it is in my lymphs, so N1.  Overall T3bN1M1b.

I’m putting on my best brave soldier face, but in reality, I’ve done nothing but cry since.  Husband is in bits too.

Oh well, onwards and upwards I guess.

Though I and probably everyone here would want to know the full diagnosis, as far as the medics are concerned once they see M1 the treatment regime is pretty limited so probably no point in talking through the TN and G.

The Enzo Vs chemo debate is interesting. Prior to the pandemic chemo was the preferred option, but the reduced immune system in a pandemic was considered risky, so Enzo was used. I don't know which is more effective, but you may know Enzo is very expensive.

He will be on the Decapeptyl injection every 6 months for the rest of his life, and long may this continue. I have also had wonderful telephone support from the specialist nurses at Prostate Cancer Uk. The Clinical Specialist Nurse where hubby is being treated is also very good. We have booked a holiday at the end of September for a UK cruise for 9 days.

My husband who knows I am getting support from the forum had begun to show interest in the responses and it has made him feel a lot more positive about his journey with this uninited guest!

Hi Dave.

As you say, que sera sera. I can't do nowt about it, just make the most of it.

To be honest, we spent last night, and a fair part of today getting blind drunk!

I haven't even googled whatever PARP is, but I'll consider it if found suitable. As you say, it's not necessarily about us, now, but for future generations.

Icky / Ian