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Diagnosed Oct 2023 prostate Cancer

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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 πŸ‘

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 20 Jun 2024 at 00:07

Hi Guys, here I am reporting progress of my radiotherapy, 20 session's through May 2024.

Radiotherapy was not all that bad. Nice staff treating me well. Preparation taking a hour, which passes well enough. 

During treatment my bowels were unpredictable. Each time I pee it burned, I joked to family as if I drank red hot chilli peppers for a month. That is still with me 18th June. But nothing I could not tolerate. Obvious I now await outcome. A few months it seems.

PSA low. I now worry about HT daily. As recommended I am strength building. It's difficult, I have to start so low I feel weak. I read about bone density loss of muscles mass. Maybe I should except belng 70.

I personally wanted to show my treatment outcome. Might help one who considering HT with radiotherapy.

I hope all treatment in future goes as well as mine. Fingers πŸ‘‰ for all our future's.

User
Posted 20 Oct 2024 at 07:15
Having your seminal vesicles removed will not remove the capability to have an orgasm, they are removed by every prostatectomy.

What you will lose is any seminal fluid ejaculate and the ability to father children.

Orgasm still feels great after treatment!

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 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 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

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 08 May 2024 at 09:26

Morning mate.

Thanks for the update. You are probably already losing a bit of physical strength, but you seem to be coping well. It seems more important, when dealing with this disease to stay strong mentally.

Best of luck with the rest of your treatment.

User
Posted 20 Jun 2024 at 00:21

PS I must add. Peeing 20 times a day 4/5 through the night. That is still with me. I am hoping it will one day be normal again.🫰

User
Posted 18 Oct 2024 at 13:12

Hi John,

Good results and I’m glad you’re feeling healthy.

I know what you mean about your sex life. I had no interest in sex when I was on HT although I can feel changes happening now I’ve finished. We experimented and found I was very sensitive to touch which gave me immense pleasure and even a semi erection. I was also still able to have an orgasm sometimes with my wife using a male masturbator. Don’t know if you’ve tried this but might be worth a try?

Good luck, 

Derek

User
Posted 20 Oct 2024 at 05:44

Thaks all for return of your post's. 

I can't say it's nice to know other's are on same boat. As I would not wish this on anyone.

Unfortunately my seminar vessel's are cancerous. So an organism will be out of the question. The old boy makes an effort at an erection, he wouldn't get a standing ovation for.

My wife is great about this and understanding. I think one has to throw the towel in and visit Ann Summers.

Oh! Hot flushes, three a night. One of three throughout the day. 

Peeing no problem throughout day but twice a night minimum.

Considering Maggies or similar, so I can have a proper moan to someone. I could not possibly tell anyone I know what I just shared. My mates know of course. I won't get any sympathy as I look far healthier than any of them.

Anyway let's hope for good future for all. Thanks for taking the time to read all my nonsense 

Show Most Thanked Posts
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 πŸ‘

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,

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 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

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

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. 

User
Posted 08 May 2024 at 01:24

Hi Guys John here reporting progress. 5 radiotherapy's down 15 to go. Abiraterone 1000mg daily accompanied by Prednisone.  This is my 11 week on pills. Allso had second injection last month of the 12 weekly injection. So far feeling fine. Don't know if it's my imagination but I seem to be losing strength alread. Hope you're all well 

User
Posted 08 May 2024 at 09:26

Morning mate.

Thanks for the update. You are probably already losing a bit of physical strength, but you seem to be coping well. It seems more important, when dealing with this disease to stay strong mentally.

Best of luck with the rest of your treatment.

User
Posted 08 May 2024 at 16:36

You are spot on there Dave!

User
Posted 20 Jun 2024 at 00:07

Hi Guys, here I am reporting progress of my radiotherapy, 20 session's through May 2024.

Radiotherapy was not all that bad. Nice staff treating me well. Preparation taking a hour, which passes well enough. 

During treatment my bowels were unpredictable. Each time I pee it burned, I joked to family as if I drank red hot chilli peppers for a month. That is still with me 18th June. But nothing I could not tolerate. Obvious I now await outcome. A few months it seems.

PSA low. I now worry about HT daily. As recommended I am strength building. It's difficult, I have to start so low I feel weak. I read about bone density loss of muscles mass. Maybe I should except belng 70.

I personally wanted to show my treatment outcome. Might help one who considering HT with radiotherapy.

I hope all treatment in future goes as well as mine. Fingers πŸ‘‰ for all our future's.

User
Posted 20 Jun 2024 at 00:21

PS I must add. Peeing 20 times a day 4/5 through the night. That is still with me. I am hoping it will one day be normal again.🫰

User
Posted 17 Oct 2024 at 23:40

Hi once again. Have been following all you guys. Despite not commenting on my condition.

Nothing different to you guys. Abiraterone 1000mg going down, forth prostat3 injection Monday next. Feeling pretty good. Sex drive low and Despite trying both Viagra and Sildnfil nothing great going on down there. PSA under 0.1. Let's hope it stays this low late November next blood test. As for low to zero love life, I know we were warned, but it's  still disappointing and hard to except. As I am feeling quite healthy. I actually forget about my condition/illness. Reminded when then occasion arise, or not arise as I should say.

Hope you are all well. Keep some good news coming 

User
Posted 18 Oct 2024 at 09:00

Glad to hear you are doing ok John. We were diagnosed at around the same time, so have been interested to see how you have been getting on.

I share your pain with the libido side of things, having had only partial nerve sparing surgery. Nothing happening at all in that department! As you say, although expected, it is a big blow when it happens isn't it.

Great news on the blood results though πŸ‘ 

User
Posted 18 Oct 2024 at 13:12

Hi John,

Good results and I’m glad you’re feeling healthy.

I know what you mean about your sex life. I had no interest in sex when I was on HT although I can feel changes happening now I’ve finished. We experimented and found I was very sensitive to touch which gave me immense pleasure and even a semi erection. I was also still able to have an orgasm sometimes with my wife using a male masturbator. Don’t know if you’ve tried this but might be worth a try?

Good luck, 

Derek

User
Posted 18 Oct 2024 at 18:00

Originally Posted by: Online Community Member

Hi John,

Good results and I’m glad you’re feeling healthy.

I know what you mean about your sex life. I had no interest in sex when I was on HT although I can feel changes happening now I’ve finished. We experimented and found I was very sensitive to touch which gave me immense pleasure and even a semi erection. I was also still able to have an orgasm sometimes with my wife using a male masturbator. Don’t know if you’ve tried this but might be worth a try?

Good luck, 

Derek

I echo the above but with a pump and with a Vibrating Penis Head Massager ( £12.99 ebay ) can acheive satifaction on a small semi and be amazed how good it feels , wife has a similar toy , never say never .

User
Posted 20 Oct 2024 at 05:44

Thaks all for return of your post's. 

I can't say it's nice to know other's are on same boat. As I would not wish this on anyone.

Unfortunately my seminar vessel's are cancerous. So an organism will be out of the question. The old boy makes an effort at an erection, he wouldn't get a standing ovation for.

My wife is great about this and understanding. I think one has to throw the towel in and visit Ann Summers.

Oh! Hot flushes, three a night. One of three throughout the day. 

Peeing no problem throughout day but twice a night minimum.

Considering Maggies or similar, so I can have a proper moan to someone. I could not possibly tell anyone I know what I just shared. My mates know of course. I won't get any sympathy as I look far healthier than any of them.

Anyway let's hope for good future for all. Thanks for taking the time to read all my nonsense 

User
Posted 20 Oct 2024 at 07:15
Having your seminal vesicles removed will not remove the capability to have an orgasm, they are removed by every prostatectomy.

What you will lose is any seminal fluid ejaculate and the ability to father children.

Orgasm still feels great after treatment!

User
Posted 21 Oct 2024 at 23:53

Francijl I hope than info is right. I am learning of you guys. A year ago I had not heard of PSA. I however still have my seminar vessel's. As it was guided towards radiotherapy and HT. As apparently 5 lymph nodes and seminar vessel's contamination. Incidentally my diagnosis T3b N1 nothing at bone. T prostate contamination what's the rest. I take it T3b is a little worse than T3a and N1 is seminar vessel's contamination ? Good health to all

User
Posted 22 Oct 2024 at 07:15
No, the T3B indicates seminal vessel involvement. The N1 indicates a lymph node is involved.

User
Posted 22 Oct 2024 at 07:55

Originally Posted by: Online Community Member
What you will lose is any seminal fluid ejaculate and the ability to father children.

As they say, cutting the vas diferens makes a vas diferens. πŸ€“

 
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