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My prostate and me!

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User
Posted 28 Mar 2025 at 08:59

Hello,

I have been diagnosed with prostate cancer.

I started feeling something was wrong with peeing system, frequency, weak stream being the signs. Went to the GP mid January 2025. Had full blood test and urine test. All results came back showing no issues, PSA 3.52 which is okay for a 71 year old man. Had another visit to the GP practice to discuss the results, I asked for digital examination (my first ever). She said prostate is enlarged and felt hard on the left side. Referred me to the hospital as possible cancer case. Had MRI that showed abnormality on the left side and seminal vesicles. Then a biopsy that confirmed cancer. Saw the consultant last week, he told me I need to do something about it now and can't leave it for another few months. He referred me to have a full body PET CT scan next week. Two days after the scan I will have my meeting with surgeons and radiotherapy teams next week. It seems to me that radiotherapy and hormon therapy is the option because cancer is present in the seminal vesicles. If PET CT scan shows spread to lymph nodes, then radiotherapy is definitely the option. Of course, this is my view of the outcome, need to see what happens with the scan next week and the meeting with the teams.

MRI: 25cc gland, PSA density 0.14, Likert 5

No enlarged prostate despite GP's diagnosis 

Initial PSA: 3.52, number of positive cores in biopsy: 9/14, Gleason score: 4+3=7, staging:T3bNO

I generally feel healthy apart from age related aches and pains. 

I will update next week. I appreciate any contributions, questions. 

User
Posted 28 Mar 2025 at 08:59

Hello,

I have been diagnosed with prostate cancer.

I started feeling something was wrong with peeing system, frequency, weak stream being the signs. Went to the GP mid January 2025. Had full blood test and urine test. All results came back showing no issues, PSA 3.52 which is okay for a 71 year old man. Had another visit to the GP practice to discuss the results, I asked for digital examination (my first ever). She said prostate is enlarged and felt hard on the left side. Referred me to the hospital as possible cancer case. Had MRI that showed abnormality on the left side and seminal vesicles. Then a biopsy that confirmed cancer. Saw the consultant last week, he told me I need to do something about it now and can't leave it for another few months. He referred me to have a full body PET CT scan next week. Two days after the scan I will have my meeting with surgeons and radiotherapy teams next week. It seems to me that radiotherapy and hormon therapy is the option because cancer is present in the seminal vesicles. If PET CT scan shows spread to lymph nodes, then radiotherapy is definitely the option. Of course, this is my view of the outcome, need to see what happens with the scan next week and the meeting with the teams.

MRI: 25cc gland, PSA density 0.14, Likert 5

No enlarged prostate despite GP's diagnosis 

Initial PSA: 3.52, number of positive cores in biopsy: 9/14, Gleason score: 4+3=7, staging:T3bNO

I generally feel healthy apart from age related aches and pains. 

I will update next week. I appreciate any contributions, questions. 

User
Posted 28 Mar 2025 at 10:17

Hi Feridun

We have similar statistics! I was 71 when diagnosed, Gleason score 3+4, PSA 5.6 and rising fast.  I had prostatectomy 14 years ago and I am still here fit and well. 

Happy to say more if you private message me which you can after a few people have commented on your post.

Wish you well.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 29 Mar 2025 at 08:33

Hi, I was also diagnosed as Gleason 7 (4+3) and after much thought went down the HT and Radiotherapy path, I had 3months of Bicalutamide before Radiotherapy and all went well and have no regrets on my decision, although if I had been offered the 5 sessions of Radiotherapy I would have also considered that, my PSA is currently at 0.5 however I'm due the results of my latest test next week, I'm 20 months post treatment, hope all goes well with you whichever treatment path you choose,  cheers 

 

John

User
Posted 20 Apr 2025 at 15:12

I am 75 soon to be 76, I have Gleason 4+3, T3b prostrate cancer, I have been told that the cancer has spread just outside the prostrate and into my seminal vesicles, on the right hand side. My treatment is 2 years of HT, Zoladex LA every 12 weeks, 23 EBR sessions including whole pelvis, followed by HDR Brachytherapy. I have my radiotherapy planning session on the 29th April, exactly 6 months since I 1st spoke to a GP. Cancer was confirmed 30th Dec after MRI and Biopsy. Also had a Radioisotope bone scan in January. I'm guessing that my treatment will start mid May.

This post does not answer your question, but may be of interest.

User
Posted 20 Apr 2025 at 20:55

I presume you will swap to HT injections from tablets in the next few weeks. The side effects from the tablet HT are different from the side effects from the injection HT. I was on the injections for two years and did not have many side effects. From reading other people's experiences on this forum. I would say if you had 100 people and lined them up from least side effects to worst side effects; the firsts 10 people would say no side effects what so ever, full libido, full erections, no other effects. The next 40 would say no libido, hardly any erections but otherwise OK. The next 30 would have the previous side effects, plus weight gain and loss of muscle strength, hot flushes, but not too serious. So that is 80 people with not much to complain about. The next 15 would say all the previous side effects, but to the extent they are reducing quality of life, probably add on depression and anxiety. The last 5 in the list would have the side effects so severe that they would stop the HT within a few months. 

So in short 80% find HT to be OK and 5% find it intolerable, leaving 15% who can put up with it.

General advice seems to be keep exercising. Once you have been on HT for a few months you will know what side effects you are getting.

Dave

User
Posted 22 Apr 2025 at 13:08

I believe there are three types of HT: GnRH antagonists, GnRH agonists, and testosterone uptake blockers.

in theory they have the same side effects, in practice they don't. As previously mentioned keeping up a moderate level of exercise is good. Getting you penis erect regularly (that may require a pump) is good as it relies on erections (often at night) to keep up good blood flow.

The injections are a pellet which dissolves over time so it is actually a constant dose rate. Having said that some people report that they do notice different side effects just after the injection and also just before the next one is due, so that suggests the dose isn't as constant as is claimed.

I would suggest you just keep on with your current HT. Do the best with exercise and penis work. Post here if you have any minor problems, if anything becomes too troublesome talk to your oncologist about swapping medication. 

There is an opinion that the first year of HT is most useful, and each subsequent year less useful. We had one poster on here who could not stand HT and stopped after six months, another who at two years out of a three year course considered the risk reward tipped things in favour of stopping. We have others who are on lifelong HT and accept it as a rice worth paying to stay alive.

 

Dave

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User
Posted 28 Mar 2025 at 10:17

Hi Feridun

We have similar statistics! I was 71 when diagnosed, Gleason score 3+4, PSA 5.6 and rising fast.  I had prostatectomy 14 years ago and I am still here fit and well. 

Happy to say more if you private message me which you can after a few people have commented on your post.

Wish you well.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 28 Mar 2025 at 21:13

Thanks for your supportive message. 

User
Posted 29 Mar 2025 at 08:33

Hi, I was also diagnosed as Gleason 7 (4+3) and after much thought went down the HT and Radiotherapy path, I had 3months of Bicalutamide before Radiotherapy and all went well and have no regrets on my decision, although if I had been offered the 5 sessions of Radiotherapy I would have also considered that, my PSA is currently at 0.5 however I'm due the results of my latest test next week, I'm 20 months post treatment, hope all goes well with you whichever treatment path you choose,  cheers 

 

John

User
Posted 06 Apr 2025 at 22:50

So, an update. I had my psms pet scan. I then went to my appointment with the team to discuss the options. The scan results show cancer has not spread. However, there is little dot further up in the ureter below the kidney. They think it's not cancer as it doesn't spread like that. You normally see dots spreading away from the prostate, not a single one so far away. They said they needed to check this with another colleague. Meanwhile, they explained the prostatectomy option and it's pros and cons. They talked about radiotherapy and hormontherapy. I had a full blood test, all the results are within range. I also had a urine flow test with a 11.5 reading result. I am going to meet them again to finalise the process and make a decision. I am now thinking more about the surgery. 

User
Posted 07 Apr 2025 at 05:39

Hello mate.

Your cancer staging is T3b which means that there is seminal vesicles invasion. There are a few on here with T3b who were told surgery wasn't an option and were treated with radiotherapy and hormone treatment. Are you sure that in your case surgery is being considered?

Here's a recent paper on treatment of T3b disease.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10241841/

Best of luck with whatever treatment you have. 👍

Edited by member 07 Apr 2025 at 05:47  | Reason: Add link

User
Posted 07 Apr 2025 at 07:17

Hello friend,

Interesting you should mention T3b not being suitable for surgery. The NHS clip on YouTube confirms this. https://www.youtube.com/watch?v=YTU94-8pTc

Scroll to 13:28

I have no idea why robotic surgery is offered to me. 

User
Posted 07 Apr 2025 at 07:18

I am also surprised anyone is talking of surgery if you're T3b - it's well known not to have a good success rate which is why most surgeons won't offer it in this case.

User
Posted 07 Apr 2025 at 08:07

Hi, I was given the choice of radiotherapy or surgery (both options were given to me as the recommended route by different doctors) with a T3b diagnosis albeit classed as very early seminal vesicles invasion. I went the radiotherapy route in the end as I was told by the surgeon who recommended it that if he did do surgery it would NOT be nerve sparing and I would most likely need salvage radiotherapy afterwards

Edited by member 08 Apr 2025 at 08:21  | Reason: changed to NOT nerve sparing!!!

User
Posted 07 Apr 2025 at 18:34
Yes I was T3b with early/slight spread to seminal vesicles. Wasn't given any choice of treatment (this was Oct 2015) the 'gold standard' for my situation was ADT for 3 years and 32 sessions of RT to prostate/pelvis. I did also have two yrs of abiraterone, enzalutimide,prednisolone as part of stampede trial.

My treatment finished summer 2018 all good up to now.

Peter

User
Posted 11 Apr 2025 at 12:11

So, here is a sort of update. I went to my appointment yesterday and saw a radiotherapy doctor. He explained that due to Easter holidays most of the team were on leave. He said the nodule seen in the ureter is most probably nothing to be concerned with, just a machine induced anomaly. He could not take the case further until this is confirmed by the team. However, he also informed me that I can be considered for PACE NODES which is a 5 sessions intensive radio therapy plus hormone therapy. I asked why despite being T3b I have been offered surgery. This option is offered to patients with high disease risk. He said it would be with additional radiotherapy. I have another appointment for next week. 

User
Posted 20 Apr 2025 at 08:23

I had my meeting with a radiotherapy doctor and decided to go down the radiotherapy route. He also recommended it over surgery. I am now taking daily hormone tablets, this would be taken for 3 years. I should have my radiotherapy treatment in about 3 months time. I also registered my interest to join the clinical trial of the PACE program. Meanwhile, in preparation for the radiotherapy, I have to practice bladder control to increase the time of keeping the urine in the full bladder. I feel better for making the decision to treat the disease. 

For those on hormones therapy, how bad is the side effects? How do you tackle the side effects? Things like putting on weight, muscle waste, breasts getting bigger, etc?

User
Posted 20 Apr 2025 at 15:12

I am 75 soon to be 76, I have Gleason 4+3, T3b prostrate cancer, I have been told that the cancer has spread just outside the prostrate and into my seminal vesicles, on the right hand side. My treatment is 2 years of HT, Zoladex LA every 12 weeks, 23 EBR sessions including whole pelvis, followed by HDR Brachytherapy. I have my radiotherapy planning session on the 29th April, exactly 6 months since I 1st spoke to a GP. Cancer was confirmed 30th Dec after MRI and Biopsy. Also had a Radioisotope bone scan in January. I'm guessing that my treatment will start mid May.

This post does not answer your question, but may be of interest.

User
Posted 20 Apr 2025 at 20:55

I presume you will swap to HT injections from tablets in the next few weeks. The side effects from the tablet HT are different from the side effects from the injection HT. I was on the injections for two years and did not have many side effects. From reading other people's experiences on this forum. I would say if you had 100 people and lined them up from least side effects to worst side effects; the firsts 10 people would say no side effects what so ever, full libido, full erections, no other effects. The next 40 would say no libido, hardly any erections but otherwise OK. The next 30 would have the previous side effects, plus weight gain and loss of muscle strength, hot flushes, but not too serious. So that is 80 people with not much to complain about. The next 15 would say all the previous side effects, but to the extent they are reducing quality of life, probably add on depression and anxiety. The last 5 in the list would have the side effects so severe that they would stop the HT within a few months. 

So in short 80% find HT to be OK and 5% find it intolerable, leaving 15% who can put up with it.

General advice seems to be keep exercising. Once you have been on HT for a few months you will know what side effects you are getting.

Dave

User
Posted 21 Apr 2025 at 08:48

I forgot to mention, I am on Orgovyx 120 mg relugolix one a day tablets. Also, the urine flow rate was 16.4. I think I will be on this medication for three years. I was offered the injection but I thought spreading the doses on a daily basis would be better. Reading the accompanying leaflet, Orgovyx can cause heart problems. I have been diagnosed with WPW syndrome, I can experience irregular heartbeat or flutter. So far only a hint of flutter. A little joint and muscle ache. Early days yet.

User
Posted 22 Apr 2025 at 13:08

I believe there are three types of HT: GnRH antagonists, GnRH agonists, and testosterone uptake blockers.

in theory they have the same side effects, in practice they don't. As previously mentioned keeping up a moderate level of exercise is good. Getting you penis erect regularly (that may require a pump) is good as it relies on erections (often at night) to keep up good blood flow.

The injections are a pellet which dissolves over time so it is actually a constant dose rate. Having said that some people report that they do notice different side effects just after the injection and also just before the next one is due, so that suggests the dose isn't as constant as is claimed.

I would suggest you just keep on with your current HT. Do the best with exercise and penis work. Post here if you have any minor problems, if anything becomes too troublesome talk to your oncologist about swapping medication. 

There is an opinion that the first year of HT is most useful, and each subsequent year less useful. We had one poster on here who could not stand HT and stopped after six months, another who at two years out of a three year course considered the risk reward tipped things in favour of stopping. We have others who are on lifelong HT and accept it as a rice worth paying to stay alive.

 

Dave

 
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