Diagnosed Oct 2023 prostate Cancer

User

Posted 17 Dec 2023 at 05:17

Hi I have recently been diagnosed with Prostate cancer. Surprisingly as I am feeling normal. Visiting the toilet overnight is the only warning side I suffer. However a Psa reading 21 has prompted MRI, Bone scan, Biopsy, and recently Cat scan. Gleason score 7.

I am being guided towards a external radiotherapy. However as I luckily enough to be a healthy 70. Everything in working order. It's had to plunge myself into this therapy. Interested if anyone has the same delemour.

User

Posted 17 Dec 2023 at 08:42

I john I had a psa off 24.9 and Gleason 9. 4 year's on after radiotherapy and hormone therapy my psa has been stable at 0.01 and have now been discharged back to gp for 6 monthly check up all my treatment has been tolerable even the hormone therapy which is a problem to some . good luck with your treatment gaz 👍

Edited by member 17 Dec 2023 at 08:42 | Reason: Mistake

User

Posted 17 Dec 2023 at 12:09

The 5 fractions and no HT is only for T1 and T2 disease, where not high risk for any other reasons.

The 37 fractions is usually 20 fractions nowadays, unless they are also targeting areas outside the prostate.

User

Posted 17 Dec 2023 at 12:03

I had HDR brachy plus EBRT and two years of HT. How many fractions of RT are they suggesting? 37 fractions and two years of HT used to be the norm. Now there is a move towards 5 fractions and no HT.

Dave

User

Posted 17 Dec 2023 at 15:17

Hi John,

I had a PSA of 2.19 and Gleason 3+4=7 in September 2016 at the age of 70 and opted for low dose Brachytherpy all went well with operation and 7 years on. I was signed off in 2021 with yearly PSA tests all very low at moment.

John.

User

Posted 18 Dec 2023 at 00:16

Hi John,

I don’t know what your staging is? Maybe you haven’t got it yet? Have you been given the option of surgery?

I was PSA 36 at diagnosis and T3bN0M0, there were signs that it was nudging into the seminal vesicles so they wouldn’t offer me surgery in Scotland. I am no expert but what it seems to me if there is any signs of it breaking through the capsule you have a higher chance of recurrence requiring SRT.

Gaz is right, some men seem not to have many side effects, but others have them all. I am just back in from a wedding where there was a Ceilidh and my joints are aching to the extent where I am struggling to climb stairs. I actually thought I was doing to dislocate my right hip during the ‘strip the willow’ which could have been quite embarrassing wearing a kilt!🤣🤣🤣

Joint ache is by far the worst side effect for me being on HT and does affect my QOL. Hot flushes are a pain, not as bad as they were but can also be quite embarrassing(eg at a wedding breakfast!), then there’s insomnia(getting better), brain fog(constant), ED(I’m actually quite lucky in that dept😊), Fatigue(not bothered by that), zero libido (had this almost immediately after starting).

But life goes on, my PSA is 0.1 and I can still have fun. If you do go down the HT/RT route the best 3 bits of advice I could give you is EXERCISE! EXERCISE! & EXERCISE

all the best whatever you decide.

Derek

User

Posted 19 Dec 2023 at 11:32

Hi, John I was diagnosed last November 2022 and was Gleason 7 (4+3) I was given the choice of Surgery or 3months HT followed by 20 sessions of Radiotherapy, after discussions with the Surgeon and the Oncologists I went down the HT and RT route and my treatment finished June 2023, overall I didn't find the treatment to bad although I did suffer fatigue and joint stiffness for 3/4 months after, my latest PSA was down to 1.4 and the Oncologists expect it to drop further, so I'm happy with my decision and hopefully you will get through this also, cheers

User

Posted 02 Jan 2024 at 00:34

PSA now 23 my category D2. My medication Bicalutamide one a day for a month, they informed me would have injections following that 30 days. Said I should contact my Surgery for the start times length of treatment and any other facts. My Doc knows nothing, give me a number that gave me another number that didn't answer. Hope this is not the future treatment I can expect. It was the 28th Dec, maybe gone home for Christmas hols

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User

Posted 17 Dec 2023 at 08:42

Edited by member 17 Dec 2023 at 08:42 | Reason: Mistake

User

Posted 17 Dec 2023 at 09:03

Morning John,

Sorry to see you've had to find us but I'm glad you have. This place is full to the brim of people who will do their best to advice help and support you.

Unfortunately I have no experience of radio therapy I chose surgery but others will come along to assist you.

I just wanted to give you a warm welcome and wish you the best of luck on your journey.

Adrian.

Edited by member 17 Dec 2023 at 09:37 | Reason: Not specified

User

Posted 17 Dec 2023 at 12:03

I had HDR brachy plus EBRT and two years of HT. How many fractions of RT are they suggesting? 37 fractions and two years of HT used to be the norm. Now there is a move towards 5 fractions and no HT.

Dave

User

Posted 17 Dec 2023 at 12:09

The 5 fractions and no HT is only for T1 and T2 disease, where not high risk for any other reasons.

The 37 fractions is usually 20 fractions nowadays, unless they are also targeting areas outside the prostate.

User

Posted 17 Dec 2023 at 15:17

Hi John,

John.

User

Posted 18 Dec 2023 at 00:16

Hi John,

I don’t know what your staging is? Maybe you haven’t got it yet? Have you been given the option of surgery?

But life goes on, my PSA is 0.1 and I can still have fun. If you do go down the HT/RT route the best 3 bits of advice I could give you is EXERCISE! EXERCISE! & EXERCISE

all the best whatever you decide.

Derek

User

Posted 19 Dec 2023 at 11:32

User

Posted 20 Dec 2023 at 17:32

Thanks Guys Looks like it's Radiotherapy with HT. I take it ractions are how many Radiotherapy session's. I have not got that far yet.

Looks like there are 6/7 cancerous lymph out side prostate. Don't sound like much fun but here I go, fingers crossed. First pill Monday 18/12/2023.

User

Posted 20 Dec 2023 at 18:13

Originally Posted by: Online Community Member

Don't sound like much fun but here I go, fingers crossed. First pill Monday 18/12/2023.

Good luck pal. Let us know how you get on.

Edited by member 20 Dec 2023 at 19:51 | Reason: Not specified

User

Posted 20 Dec 2023 at 20:18

J T, hope all goes well for you. What tablets are you taking and for how long. It will be interesting to see what treatment you are having. Scans and techniques have changed, keep us updated if you can.

Thanks Chris

User

Posted 20 Dec 2023 at 21:56

Good luck with your treatment John. Try and stay as fit and active as possible to minimise the side effects of the HT. Hopefully you might be lucky and escape the worst of them. if you haven’t got a gym nearby buy yourself some resistance bands, there’s lots of good exercises you can do with these.

all the best,

Derek

User

Posted 02 Jan 2024 at 00:34

User

Posted 02 Jan 2024 at 16:14

Hi John, usually the injection start halfway through the 30 day bicalutamide course, rather than at the end. Get yourself signed up to see your medical records online. You will need your GP to authorise this. You will want to see your test results and correspondence between GP and consultant.

Sadly in the modern NHS you will find you have to manage your own treatment and keep on top of tests, appointments etc. some GPs, hospitals are good at this, but it now seems a bit too much effort for most of them.

Dave

User

Posted 18 Jan 2024 at 07:17

Thanks for the warning Dave. Had a heck of a job getting my first injection sorted. Three weeks late starting injections. Without your warning I would still be waiting in linbo now. Contacting hospital involves exhausting 5 phone numbers then their complaints number. Urology will then call me back! First injection today. Had to bbe given additional 11 days Bicalutamide to cover late injection, getting them involved another story similar to above. Dispite the struggle I am positive.

Decho I had a lot benifit from you post. Looks like my condition /treatment is as yours, hopefully getting through it as well as you

User

Posted 18 Jan 2024 at 08:16

Hi John,

Really sorry to hear about your lack of care from the NHS. Scotlands NHS is FAR from perfect but my treatment has been exemplary from start to current day. It’s my CNS that gives me the injection and it’s good because they have a chance to have a chat(moan🤣🤣🤣) about how you are doing. I get my next appointment sent to me immediately after my injection…it’s always exactly 13 weeks if you’re on Prostap like me. Care seems to vary very much from one NHS trust to another but it seems shocking to me that you’re left to fend for yourself when you’ve got so much else going on that you’re having to deal with.

Yes you need to continue with Bicalutamide after the first injection as it will prevent testosterone flare when you get your first jab.

As you’ll see from my posts and journey joint ache is by far the worst side effect for me, joint ache especially hips, knees and ankles. I have to go for a blood test when I get home from holiday to rule out polymyalgia rhumatica. What seems to be helping though is walking….on holiday I’m doing at least 10k a day and my kness are getting stronger…I can now get up from a chair without the help of my arms…Spanish toilet seats were a nightmare too🤣😊😊

My next battle is going to be to lose some weight…recently I just need to look at food and I put on the pounds!

I would advise you to keep as fit and active as possible going through this, it’s NOT easy at times but it’s worth it. And don’t stop being active during your RT, do as much as you can without exhausting yourself, even going for short walks. If you’re not a member of a gym buy yourself some resistance bands…I find them very good.

Good luck with your treatment and if you’re struggling please feel free to PM or post on here.

Derek

User

Posted 25 Mar 2024 at 00:02

Hi to all you helpfull people. I have been quiet for a while. As I had been half guessing my condition. Seems I am Gleason score 7. I got that right. T3b M1 but nothing in bones thats my diagnosis. Apparently several lynph nodes around pelvic area. About to have my second HT injection 11 April. Abiraterone will be the tablet form of HT. My third week on the Abiraterone already, this is accompanied with steroid Prednisone. Starting RT on 4th April 2024. My psa which of course 21 in Oct 2023, rising to 23.8 in Dec 2023. Has nosedived to .8, not sure if that's worthwhile celebrating yet. Never slept so many times in the same day, lucky I'm retired. Don't know why I'm so calm my family going to pieces.

User

Posted 25 Mar 2024 at 08:37

Originally Posted by: Online Community Member

Don't know why I'm so calm my family going to pieces.

Morning mate.

What a poignant last line. This disease so badly effects our loved ones.

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