Relugolix & Radiotherapy

User

Posted 28 Mar 2026 at 07:37

Well yesterday we got the results we didn’t want, was worse than we thought as PSA was only 7 leading to the initial investigations.

2 of 18 cores were positive at Gleason 4-4, Cambridge Group 4. Pretty serious cancer I think.

John can’t have surgery due to pre-existing cardiovascular conditions, the Dr said it would be too risky. Instead he was prescribed Relugolix hormone treatment for 2-3 years, then 4 weeks radiotherapy at Preston Park in 6-9 months. They are booking a PSMA Pet scan - presumably to check if the cancer is contained, so another 2-3 week wait for that. But at least treatment can start straight away (hopefully Monday as no pharmacy had it in stock so have had to order it.)

We were both left reeling by the news tbh, but our lovely nurse told us to have the weekend without reading any of the information she gave us, and wait until Monday as will process it better…thinking of booking a quick couple of weeks in our Spanish home to get over the initial news once we’ve got his medication!

So, if anyone has any positive advice about this treatment plan, please let me know as everything feels a bit overwhelming this morning.

Tracey

hope your recovery is going well, and you’re feeling a bit better every day xxx

User

Posted 28 Mar 2026 at 09:26

2 out of 18 cores is not too bad.

In your other post you mentioned PSA 3.5 in 2023 and 7 in 2026. I think that 3.5 should have triggered a bit more monitoring. Anyway, if the 3.5 was caused by cancer, it has taken three years to double, that implies the cancer is not very aggressive.

HT isn't a great experience but most find it bearable. Radiotherapy is a very effective treatment.

Dave

User

Posted 28 Mar 2026 at 10:04

Hi, Tracey.

I'm sorry that John's result weren't as good as you'd hoped for. However, only two of eighteen cores indicates low volume disease. Do you know the percentage of how cancerous each of the positive cores were?

Gleason 8, is the bottom range of high risk cancer. Like John, my PSA was only 7 but I was eventually diagnosed Gleason 8 (3+5) with capsular breach, T3a, which was later upgraded to 9 (4+5).

Also, like John, I had heart issues, ischemic disease.

This is my tale of heart problems and prostate surgery:

From the outset, there were concerns as to whether my heart disease affected my suitability for surgery. Apparently during surgery you are tilted on the operating table with your feet higher than your head, its called the Trendelenburg position. This exerts more pressure on your heart.

I don't know if there such a thing as a phobia of hospitals, but if there is, I've got it. 🙂 I wanted surgery and keep everything down to just an overnight stay. The thought of the alternative, 35 daily visits to hospital for radiotherapy plus hormone treatment, made me feel very anxious. I desperately wanted RARP and get it over with asap.

As the surgeon and aneathetist were concerned about my heart problem, they contacted my cardiologist. He gave me a cardiac ultra sound scan and deemed me fit enough for surgery.

After much deliberation, which ended up delaying surgery by ten weeks, I had RARP.

During the decision period, I got the impression that it was the aneathetist's final opinion that was most important.

During the operation, my heart coped fine. However, two months later, I had a heart attack, and was rushed back into hospital. I was in for a fortnight and they eventually put stents in. This was the worst time of my life. I was still incontinent, 'nappies on' and wired up to a heart monitor. It was a nightmare.

Although my old ticker survived surgery, I still think the subsequent heart attack was probably due to prolonged and additional stress caused by the diagnosis, treatment and dealing with the side effects of prostate cancer.

The moral of the story is, if they have doubts about your heart, surgery's probably not the best option. 🙂

Anyway, I'm fine now. Apart from having to use penile injections to 'Do the biz', I'm back to normal.

I know a high Gleason score isn't great news, but I've come to the conclusion that so long as the your chosen radical treatment, eliminates it, it doesn't really matter.

There are lots of Gleason 8 and 9ers on here that are doing fine.

I hope that John's scan confirms the disease is prostate confined and that following treatment he makes a full and speedy recovery.

As Dave says, radiotherapy is equally as good, if not better, than surgery. I wish you both the best of luck. 👍

Edited by member 28 Mar 2026 at 11:50 | Reason: Spelling

User

Posted 28 Mar 2026 at 10:59

Tracey, for information I have been on Relugolix for just over a month now, in my case long term hormone treatment after the cancer has now spread into multiple sites. As explained to me the side effects of Relugolix are a lot lower than with traditional hormone treatments like the injections. So far this seems to be confirmed. Apart from the obvious one that it has killed what remaining sex drive I had I have had no hot flushes or other effects. I do seem to tire easily though, one of the listed side effects. I had radiotherapy ten years ago, a decision I made at the time and don't regret, though this latest flare up is somewhat of a worry. The decision at the end of the day though is for you and your partner to make.

User

Posted 28 Mar 2026 at 13:43

Hi Adrian,

thank you for your reassuring words…I haven’t yet opened the envelope with all the details nor have we had it in writing as a summary, just the headline figures yesterday so I’ll know more soon.

To be honest, I’m glad they made the treatment decision for us, as I was worried about the risk of complications with surgery - but listening back to my recording of yesterday’s conversation it was his cardiac issues as well as the possibility it may have broken through the prostate…presumably the PSMA Scan will tell us that. No idea if treatment will change if it has - trying not to think about that possibility at the moment as we process what we do know!

next challenge is actually getting the prescription! Our local chemist ordered it yesterday, called in today to see if it had arrived early to be informed it had “been taken off their order!” which we wouldn’t have known about until Monday had we taken their word for it! So now order is with Boots in Hove and should be available Monday afternoon- 3 days after he was supposed to have started it. Why the hospital don’t just give you the first prescription if they know it has to be ordered is beyond me.

you sound like your cardiac issues were a nightmare to deal with on top of major surgery recovery, hope you are now on top of it and medication is keeping you healthy on that front? Also, hope your wife is ok, I know you said she had been unwell in a different post.

tracey xxx

Show Most Thanked Posts