Diagnosed with Aggressive Prostate Cancer

[Wharfster]

Hi guys,

Just wondering if anyone has had a similar experience to mine.

I had a TURP op for a BHP less than 12 months ago.

All going well until my PSA test 3 months ago came back as 18.5 then 18.9 one month later.

Since then I have had an MRI, PET scan and biopsy which has found 5 tumours on my prostate with Gleason score of 8 to 9 and Intraductal Carcinoma in 2 tumours and Adenocarcinoma in all others.

Fortunately at this stage it is still confined to the prostate.

I am waiting a Radical Robotic Prostatectomy.

The waiting is the hard part as I keep thinking if it escapes and spreads, in the meantime, I’m “up the creek!”

I’ve been told having this aggressive type of cancer is fairly rare in a 71-year-old guy.

I have always had all the checks over the last few years and I’m completely gobsmacked that this has happened.

I now face the “fight of my life” it seems!

[Murk]

We understand and have been there before you. IMO the first thing to do is take a deep breath and try to chill. Having had even a higher Gleason score then you, I can relate but also let you know that this is not in any way a death sentence.

Since you are waiting on the Urologist for a RP (Radical Robotic Prostatectomy), I suggest seeing a highly rated RO (Radiation Oncologist). You will learn more and be exposed to a differing approach.

Not knowing more details and timing, you could always ask your Docs for ADT ( Androgen deprivation therapy) drug or shot which will help dampen the Prostate Cancer (PCa) speed & progress.

Just some thoughts and others will chime in

[Wharfster in reply to Murk]

Thanks Murk!

I’ve noted your suggestions and I’ll bring it up when I see him today.

[Don717]

I have about the same diagnosis...perhaps a bit less cancer. G8/IDC but very small amount. At your age I would do some investigating concerning RP. The side effects of RP only increase, rapidly I might add, at your age, comorbidities and choice of surgeon. Lots of variables!! I would ask for a consult from an MO/RO before preceding. Brachy w/Boost and ADT would be something I'd ask about..much wider treatment field than RP with that diagnosis. Also, IDC is of no concern regarding treatment choice....it will be zapped along with the rest of the cancer. These guys in here know far more than I and will help guide you.

I had successful (so far at 3 years) treatment with RP. No urinary/erections issues but I was 60 and in excellent physical health with terrible urinary problems that led me to elect RP.

Good luck to ya sir!!

[Wharfster in reply to Don717]

Thanks Don717, I’m still pretty fit and healthy even at my age- gym most days.

Glad that your treatment was successful after three years - gives me hope!

[Xavier10]

Intraductal hasn't been studied enough to really understand what it is and what it isn't. I had a urologist that told me the good thing about intraductal is it tends to stay in the prostate. So maybe surgical removal of the prostate is the best idea for you. Then again radiation has seen a lot of advances in the last years and could be very effective. I had Epstein say I had intraductal in one core and I had IMRT radiation and recently a followup PSMA three years out found zero uptake in anything. Doesn't mean there are no micrometastases lurking out there somewhere but it apparently worked on my intraductal. So far. But removal is a definitely possibility. So I would ask an RO as well as a urologist about that.

[Wharfster in reply to Xavier10]

Thanks Xavier10,

I think they want Radiation up their sleeve just in case RP isn’t successful (you can only give radiation once in the groin area I’ve been told)

That’s very interesting concerning the Intraductral carcinoma. Let’s hope that’s where it stays until it’s removed!

[Xavier10 in reply to Wharfster]

I should probably add, like TallAllen mentions below, I had whole pelvic in addition to IMRT to the prostate. due to some mild choline scan uptake that might or might not be PCa. And judging by the PSMA scan, it has worked well. He makes a very good point.

[Tall_Allen]

You owe it to yourself to talk to a radiation oncologist as well. Probably, it is not as confined as your imaging leads you to believe. Fill in this nomogram to see what the probability is:

mskcc.org/nomograms/prostat...

Consider treating the pelvic lymph node area as well, according to the POP-RT protocol:

prostatecancer.news/2021/08...

[Wharfster in reply to Tall_Allen]

Thanks Tall_Allen - I’ve taken onboard your suggestions. I’m seeing my Urologist today so I’ll bring up some of your points.

I’ve got a lot of research to do on this beast over the next week or so - thanks again mate!

[Tall_Allen in reply to Wharfster]

If you can, talk to a radiation oncologist.

[Wharfster in reply to Tall_Allen]

Hi Tall-Allan,

A group of 5 professions including Radiation Oncologist x2, Urologists x2 and my Surgeon met on Tuesday morning to go over my MRI Scans PET Scan and earlier TURP results.

They suggested a RRP would be my best option then if recurrence using radiation.

Apparently research has shown ( in the USA) that removing the lymph nodes has a high risk of Lymphedema and doesn’t seem to have much influence on the outcome.

I’m from Perth, Australia - a number of my mates are going through the same thing - an insidious male disease to get no matter where your from!

[Tall_Allen in reply to Wharfster]

Try to talk to the radiation oncologist alone.

[Xavier10 in reply to Tall_Allen]

⬆️⬆️⬆️

[leach234]

I was a Gleason 8. Upon pathology it was determined it was a Ductal Adenocarcinoma (about 0.05-0.08% of all prostate cancers.). Very poorly understood and nobody knows how to treat it. Dont let it escape the prostate!!!!!. Mine was contained to the prostate with a 2 mm positive margin. My urologist wanted to wait 3 months before taking the initial biopsy and take another PSA test (my PSA was 5.2) and he wanted to ensure it wasn’t prostatitis. I said no. Then there was a 3 month wait for surgery but I asked to get on a cancellation list even though they said nobody ever cancels. A cancellation occurred the next week. Overall I saved 6 month time. I’m sure if I would have waited my results would have been much worse. The 2 mm margin (size of a crayon tip) could have been much larger.

Long story short that was 6 years ago and my PSA is now tested annually and has always been <0.02. Get in for surgery ASAP!

[Wharfster in reply to leach234]

Hi Leach234,

Thanks mate - I hear what you say!

You’ve been a great help.

I see my surgeon in a couple of hours and hope to have it out ASAP.

I’ve got quite a few questions for him this arvo after many terrific responses from this forum.

I feel like I’m walking around with a ticking time bomb.

Good luck to you and I’ll post again when I’ve got some news.

[Xavier10 in reply to leach234]

I THINK (not completely sure, but I think) that ductal is different from Intraductal. And is more serious.

[Wharfster in reply to Xavier10]

Hi Xavier - that’s what I’ve been told too!

BUT - it tends to stay encapsulated in the prostate longer.

[Xavier10 in reply to Wharfster]

Ductal does not stay in the prostate. Supposedly intraductal does, though. They are totally different types of variants, despite using a similar base word.

[Brightman]

Same thing happened to me after a TURP. Within less than a year my PSA went up & biopsy showed cancer metastasised to 4 places and Gleason 9. Pathology from part of prostate that was trimmed showed no cancer. I have always wondered if the TURP disturbed things? What a trip I have been on since with radiation , chemotherapy & ADT since 2016-2017 . I have just had spinal surgery with 7 vertebrae fused because radiation on my T10 caused by cancer coming back and a compression fracture led to incredible pain. Have just begun rehab for all that. But last Friday at my 3 monthly visit to my oncologist my bloods show that psa has climbed from <0.01 in February to 0.04 in May to 0.27 in August. So more bone scans/CT scans coming up. Who knows what happens next??

[babychi]

You need to consider radiation bigtime. Surgery has some really life changing side effects. My buddy had zero incontinence after EBRT. My boss still wears nappies after 12 months post surgery. Research is key.

[fast_eddie]

I wouldn't make radical prostatectomy surgery my first treatment option. Most invasive option and highest risk for quality of life side effects that we don't even like to think about. I had TURP surgery and was diagnosed with prostate cancer 10 years later. You might want to research HIFU. It is the option I chose and eight years later I doing well.

[Wharfster in reply to fast_eddie]

Hi Fast -Eddie,

Thanks for your reply.

Sounds like you’ve been through the mill and come out of it doing well - fabulous!

“A group of 5 professions including Radiation Oncologist x2, Urologists x2 and my Surgeon met on Tuesday morning to go over my MRI Scans PET Scan and earlier TURP results.

They suggested a RRP would be my best option then if recurrence using radiation.

I’ve already started my Pelvic floor exercises with my Physiotherapist and several mates who have had their whole prostate removed.

I’m from Perth, Australia - a number of my mates are going through the same thing - an insidious male disease to get no matter where your from!