The results are in .........

User

Posted 10 Jan 2025 at 17:19

Having had my biopsy 16 days ago , Christmas Eve , I was today telephoned and a specialist nurse talked me through the results .

Prostrate cancer is present . On the Geason scale measuring the nature of it I was told that 6 is progressing slowly whilst 10 is the most aggressive .

I held my breath hoping for a 7 or 8 ...only to be told that mine is looking like a 9 . Worrying .

The results of a bone scan I had yesterday did not show any added concerns of the cancer having spread to any bones . Good News

I was told that I would get an appointment for a " more sensitive " PET scan which apparently seeks out any spread to other tissues , lymph nodes . Everything crossed .

Feels as though I am locked into a cycle of tests , MRIs, and scans and then letting my minds imagination run wild as I sit back to await results , verdicts , prognosis and hopefully soon a treatment plan .

Oh dear ......it is what it is

User

Posted 10 Jan 2025 at 21:10

Hi David

Im sorry the result wasn’t one you wanted and the rollercoaster is still running.

I just wanted to tell you my husbands story.

He was diagnosed last April with Gleason 9 and had a radical prostectomy in June .

His pathology came back T2c with no other adverse findings except the tumour very very close to edge!

he has recovered well is largely continent and despite having one side nerve bundle taken is getting getting erections.

his first two PSA tests following surgery have been undetectable and he’s due another next week!
his surgeon is very optimistic about his future stating facts of 95% survival at 15 years post diagnosis.
So I just wanted to give you a bit of moral support to say that despite the Gleason 9 you have a good chance of living many many years.

take care

User

Posted 10 Jan 2025 at 23:22

Yes seven years ago I was expecting a "normal" cancer score of about 6 or 7, but I got a 9 instead. Anyway, all treated and undetectable now.

The problem is that with that sort of score they have to throw the book at it. Wait to see what they say, but don't be surprised if you are on HT for a couple of years, or if surgery is none nerve sparing.

Dave

User

Posted 11 Jan 2025 at 00:19

Margot , thank you so much for your kind words of hope and reassurance.

Blue skies ahead xx

User

Posted 11 Jan 2025 at 00:21

Thanks Dave for your words of hope x

User

Posted 11 Jan 2025 at 00:56

Hi David.

I eventually ended up Gleason 9 (4+5) and the cancer had breached the prostate capsule. T3a staging.

Almost two years ago I had robotic surgery and since then my PSA has remained undetectable.

There are several others on here that are Gleason 9ers had have made similar recoveries.

The good news is, yours seems confined to the prostate. I hope the PET scan confirms that.

Please keep us updated mate. We'll do our best to help and support you through this unsettling time.

User

Posted 11 Jan 2025 at 12:15

My husband was diagnosed with Gleason 9 Tb3 in 2015 he had HDR Brachytherapy followed by 26 sessions of RT and three years HT his PSA was undetectable for a while ( about 2yrs) then it creeped up again. He is now stage 4 and on hormone injections three monthly, and his PSA remains undetectable. He also takes a number of supplements and follows a metabolic treatment regime which includes metformin ( he’s not diabetic) and menbezadole & doxycycline and a small amount of statin . His quality of life is good, he is quite active and enjoys life. We eat no processed foods and grow our own veggies. His down side is no libido, which upsets him, but we manage. He is now 74 and we are planning our veg garden for this year. Gleason 9 is aggressive, but so is our way of addressing it, he had a mixture of NHS and self funded treatments, and still has self funded advice for the metabolic approach. We have done quite a bit of reading researching and have quite an alternative approach which suits us, but not everybody. I hope this helps.
Leila

User

Posted 13 Jan 2025 at 08:56

Hi David,

Brief history of my journey (I really need to get my profile updated), I was diagnosed in June 2024 after following a typical path as everybody else. My Gleason score post biopsy was 8 (4+4) and I opted for surgery after subsequent scans showed no further spread.

Post surgery pathology showed an increase in my Gleason score to 9 (4+5) and a staging of T3a.

I've only had 1 PSA test since my surgery in October 24 and this has come back as undetectable.

Only advise I can offer is don't make the same mistake I did and try to work out all the possible outcomes from all possible test results, as hard as it may be, try and concentrate on the implications of the last test result and the choices you have to make based on that. I tried to second guess things and ended up in such a mess.

Good luck for the testing and keep us all updated.

Dave

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