I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Radiotherapy as first choice for younger men

Email this conversation Print this conversation
User
Posted 08 Jan 2024 at 19:10

I was diagnosed with multi focal Gleason 3+3 11 years ago at age 46, but PSA rose unexpectedly last year and a subsequent biopsy revealed one core of 4+3 - still localised as far as they can tell, but time for action.

For years when considering treatment I'd been leaning toward the 'cut it out' route. as opposed to radiotherapy, but my urologist (a surgeon) has always seemed less than keen, seeming to prefer brachytherapy or even EBRT.

Unfortunately, because of the unexpected development of the disease, brachy is no longer an option, and radiotherapy will be external beam IMRT so they can put a margin around it and 6 months ADT.

I understand the very small risk of secondary cancers in the future, and the remote possibility of it recurring in the prostate and for me these are acceptable risks (as opposed to cutting it out and discovering I need RT anyway).

From all the reading I've done, trying to avoid any biased articles toward Surgery or RT, it would appear that Brachy or even IMRT is gaining ground over surgery (with no salvage RT) with the same efficacy and less dramatic side effects.

The only downside to RT is they don't have lots of 20-year data on secondary cancer rates.

I'm fortunate enough to be under the care of one of, if not the top cancer hospital in the UK (very well known), so I have to defer to their expertise, but I'm confused why so many men elsewhere in the UK are still being recommended surgery and probably being told because of their age, RT isn't suitable if my hosp. seems to think the opposite.

User
Posted 09 Jan 2024 at 09:09

Surgery is an event. Radiotherapy is a process.  A very long (18 months or more) process,  because (for prostate cancer) it is preceded and followed by many months of hormone treatment.  The effects of hormone treatment are  not pleasant. Some men tolerate it better than others but the implications are worse for relatively young men. There are various threads on this forum which explain HT in more detail. 

By contrast, surgery for prostate cancer does NOT usually involve HT. 

 

User
Posted 09 Jan 2024 at 22:02

Originally Posted by: Online Community Member
Hi decho I was told I would be on hormone therapy for 2 to 3 years but my onco stopped it at 18 months saying no real benefit in carrying on after then

The stats [and I've posted them here before] back up that opinion. There's next to no advantage in going to 3 years over 18 months or two years and the very small difference in survival rates comes down to the fact that if you have HT for three years it's going to take at least two more for the effects to wear off. Hence any cancer that's still present is going to have to work hard to kill you within the 5 year window. It might kill you after that of course. 

I have to wonder if some specialists persist with the 3 year thing so that their 5 year survival rates will look better.

Jules

Edited by member 09 Jan 2024 at 22:28  | Reason: Not specified

User
Posted 10 Jan 2024 at 01:21
We used to have an annual forum 'get together' in Leicester, with speakers. One of the favourite speakers was an amazing oncologist who was doing some really ground-breaking stuff - search for Si_Ness or testosterone flooding on this forum to get an idea of his work. Anyway, he strongly believed that there will come a time in the future when people are horrified that we ever had prostates removed surgically - and that radiotherapy in all its forms is fast becoming the golden ticket.

My husband was 50 at diagnosis & RP and 52 at recurrence & RT / HT. I did a lot of research at the time on RT-induced cancers and the data was very reassuring - pelvic RT increases the risk of bowel cancer by less than 4%. Since men in the UK have a 6.5% chance of getting bowel cancer, that means that the risk increases to 6.75% for a man who has had pelvic RT. Eating a ham sandwich increases your bowel cancer risk more that the RT does - 13% of bowel cancer cases are caused by eating processed meat.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2024 at 22:22

I feel for you Ross, I really don’t think there’s enough support for those of us going through HT/RT. I’ve just finished HT (last jab 5 months ago). I’ve not had the daily problems you’re experiencing…..yet anyway, but I feel like you’re left to fend for yourself and just have to accept what this does to your body. I still can get an erection of some sort, but the Peyronie’s has made it look like and hour glass…and it makes me quite sad.

The blue pills give me a headache although I do take daily low dose tidalafill to try and keep blood flowing. I’m hoping to get my sex life back at some point but who knows?🤷🏼‍♂️

All the best to you,

Derek

User
Posted 05 Sep 2024 at 12:00

Ross,

When did your last HT injection run out (i.e. when would the next one have been if you hadn't stopped)?
Where are you with Testosterone return? Has it been measured?
Have you been doing penile physio/rehab while you've been on HT?

I would not necessarily take what an oncologist says about sexual function very seriously - I have met many who have no idea.

Show Most Thanked Posts
User
Posted 08 Jan 2024 at 22:19

I was diagnosed at 52 with surgery in September 2022. All options were available to me but the surgeon said being so young I was giving myself a better longer term chance going the surgery route. If there was a reocurance then RT would of course be available. RT itself is not without risk of causing damage. Hence reduce the number treatments potentially in the future. 

I guess guidance changes over time as more data comes available, that is the nature of medicine or science. You can only put your trust in the professionals and I have zero regrets following their advice.

 

User
Posted 09 Jan 2024 at 03:42

Opinions, even amongst experts, will differ Quite Disturbed but I think you're probably going in the right direction.

Like you and others here, my first choice would have been to "have it out" but in retrospect I'm very happy that I had EBRT. I was G9 with seminal vesicles involved plus 3 nearby lymph glands, so a prostatectomy just would not have done the job.

It does sound as though you don't have any spread, though if there was any chance of that I'd be asking for a PSMA PET scan.

I'm sorry to hear you've copped this curse when you're still relatively young at 57.

Jules

User
Posted 09 Jan 2024 at 06:07
Entirely depends on your staging. If it's contained surgery is your best option for a long remission. If it isn't might as well do the RT.

It's not just other cancers from the RT that are a risk, RT can also cause cancer in the prostate too. Clearly if it isn't there it can't cause you any issues.

User
Posted 09 Jan 2024 at 09:09

Surgery is an event. Radiotherapy is a process.  A very long (18 months or more) process,  because (for prostate cancer) it is preceded and followed by many months of hormone treatment.  The effects of hormone treatment are  not pleasant. Some men tolerate it better than others but the implications are worse for relatively young men. There are various threads on this forum which explain HT in more detail. 

By contrast, surgery for prostate cancer does NOT usually involve HT. 

 

User
Posted 09 Jan 2024 at 13:38

Originally Posted by: Online Community Member
Entirely depends on your staging. If it's contained surgery is your best option for a long remission. If it isn't might as well do the RT.

This a question I’ve always pondered. In my case, staging T3b (upgraded after MDT meeting). I wasn’t offered surgery but then wasn’t able to have the optimum RT to both the prostate and pelvic area because of position of the bowel. With surgery, you have the chance of SRT but with RT as I understand it, your options are limited if the HT/RT doesn’t work, meaning you could face a lifetime on HT.😩

I realise that for some men this isn’t really an issue, but for others it can be lifetime of misery. All the guys I know on the HT/RT route are facing 3 years on HT which is more than enough…I really wish it was 18 months and I would be finished it by now and looking forward to getting my life back😊

User
Posted 09 Jan 2024 at 14:54

Hi decho I was told I would be on hormone therapy for 2 to 3 years but my onco stopped it at 18 months saying no real benefit in carrying on after then has anyone had the same opinion meanwhile my psa continues to be 0.01 nearly 4 year's after my radiotherapy finished 👍gaz

User
Posted 09 Jan 2024 at 18:36
Decho you can stop HT whenever you want it's up to you.

Re RT you may still be able to have nodes treated that are outside the original treatment area.

User
Posted 09 Jan 2024 at 20:30

Hi Hopeful Oldie,

Re: "Surgery is an event, Radiotherapy is a process".

Unfortunately, the surgical 'event' is sometimes followed by after-effects (e.g. incontinence and E.D.), which can be as long lasting as HT.

Best wishes,

JedSee.

User
Posted 09 Jan 2024 at 21:05

Originally Posted by: Online Community Member

Unfortunately, the surgical 'event' is sometimes followed by after-effects (e.g. incontinence and E.D.), which can be as long lasting as HT

Hi JedSee 

But could it not be argued that RT can have similar side effects to surgery plus you've got the additional side effects of HT?

I seem to recall that incontinence and ED outcomes for RT and surgery are very similar, but with RT you've got the extra side effects of HT.

Or have I over simplified that?

Adrian.

User
Posted 09 Jan 2024 at 21:07

What determines how long you stay on HT after RT , 

if your PSA was low enough to get RT in first place 

 

apologizes if this is a stupid question 

User
Posted 09 Jan 2024 at 22:02

Originally Posted by: Online Community Member
Hi decho I was told I would be on hormone therapy for 2 to 3 years but my onco stopped it at 18 months saying no real benefit in carrying on after then

The stats [and I've posted them here before] back up that opinion. There's next to no advantage in going to 3 years over 18 months or two years and the very small difference in survival rates comes down to the fact that if you have HT for three years it's going to take at least two more for the effects to wear off. Hence any cancer that's still present is going to have to work hard to kill you within the 5 year window. It might kill you after that of course. 

I have to wonder if some specialists persist with the 3 year thing so that their 5 year survival rates will look better.

Jules

Edited by member 09 Jan 2024 at 22:28  | Reason: Not specified

User
Posted 09 Jan 2024 at 23:38
I had my last HT during RT and nothing thereafter and I do wonder whether I had had HT for 18 months or so another tumour might not have grown, can't say.

Although the side effects of Surgery and RT can be the same, the severity can be quite different with a greater risk of incontinence with the former. There are of course a number of other reason why an individual may favour or is more suitable for one over the other. I think the general swing from Surgery to RT in patients with the increasing age is a reflection of medical thinking.

Barry
User
Posted 10 Jan 2024 at 01:21
We used to have an annual forum 'get together' in Leicester, with speakers. One of the favourite speakers was an amazing oncologist who was doing some really ground-breaking stuff - search for Si_Ness or testosterone flooding on this forum to get an idea of his work. Anyway, he strongly believed that there will come a time in the future when people are horrified that we ever had prostates removed surgically - and that radiotherapy in all its forms is fast becoming the golden ticket.

My husband was 50 at diagnosis & RP and 52 at recurrence & RT / HT. I did a lot of research at the time on RT-induced cancers and the data was very reassuring - pelvic RT increases the risk of bowel cancer by less than 4%. Since men in the UK have a 6.5% chance of getting bowel cancer, that means that the risk increases to 6.75% for a man who has had pelvic RT. Eating a ham sandwich increases your bowel cancer risk more that the RT does - 13% of bowel cancer cases are caused by eating processed meat.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2024 at 06:12

Originally Posted by: Online Community Member
We used to have an annual forum 'get together' in Leicester, with speakers. One of the favourite speakers was an amazing oncologist who was doing some really ground-breaking stuff - search for Si_Ness or testosterone flooding on this forum to get an idea of his work. Anyway, he strongly believed that there will come a time in the future when people are horrified that we ever had prostates removed surgically - and that radiotherapy in all its forms is fast becoming the golden ticket.
 

I'm sure that will be the case. Recently I saw on the main BBC news that research had shown that radiology visits for prostate cancer could safely be reduced to just five. They said the cost saving implications for the NHS and benefits to patients would be enormous. I'd certainly have taken that option, rather than robotic surgery, if it had been available to me.

However, I've also seen that even better than that, research is being made to somehow alter certain cells in our bodies to 'latch on' to cancer cells and destroy them 'naturally'

I'll try and find links to them and attach them later.

Radiotherapy

https://www-bbc-co-uk.cdn.ampproject.org/v/s/www.bbc.co.uk/news/health-66946336.amp?amp_gsa=1&amp_js_v=a9&usqp=mq331AQIUAKwASCAAgM%3D#amp_tf=From%20%251%24s&aoh=17048673349673&referrer=https%3A%2F%2Fwww.google.com

Immunotherapy/adaptive cell therapy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5304374/#:~:text=Adoptive%20Cell%20Therapy&text=This%20involves%20the%20extraction%20of,response%20%5B5%2C6%5D

 

Edited by member 10 Jan 2024 at 06:41  | Reason: Typo.

User
Posted 04 Sep 2024 at 20:22

Well I don't know! I've posted before about my PC. I had the full caboodle! 20 sessions of RT, followed by the full three years of HT (injections mostly). I was never told that I could have had less of either and stopped sooner, but now I wish I had.

I recently had the six-monthly phone call from my Onco, where she clarified my recent concerns. Before I started treatment in early 2020 and all masked up, I was told that my sex life would come to an abrupt halt! But not to worry, as about one year after finishing HT, it would all come back! Well now this latest Onco said that that's not quite the case. Apparently the ED that I have at the moment, will probably last me for life and that I may not get back anything more than I have now! Which is next to nothing! After any feeble attempts at giving or receiving any kind of mutual pleasure, I have either nothing, or the tiniest spurt of something! Well I don't call that a sex life at all, so I'm kinda hoping that this latest Onco is a little bit wrong. Oh don't get me wrong though, I AM very grateful for all the treatment I've had and the Endoscopies (2) and the Colonoscopy (1), that shew that my internal downstairs parts now look like part of Chernobyl or Hiroshima! And cause no end of daily problems with a kind of sudden incontinence and generally leaking pools of blood (expected, I am told). At least, with my 'less than 0.1 PSA' I should have a few more years to look forward to. But I really hope that I have something come back in the bedroom department, as I told my partner what I was told four years ago and she's hanging on and hoping for the same! The only option this latest lady told me, was to go and ask for some little blue pills! I don't like the sound of their side effects though and so am hoping that I won't need them. Good luck to the rest of you fellas!

User
Posted 04 Sep 2024 at 22:22

I feel for you Ross, I really don’t think there’s enough support for those of us going through HT/RT. I’ve just finished HT (last jab 5 months ago). I’ve not had the daily problems you’re experiencing…..yet anyway, but I feel like you’re left to fend for yourself and just have to accept what this does to your body. I still can get an erection of some sort, but the Peyronie’s has made it look like and hour glass…and it makes me quite sad.

The blue pills give me a headache although I do take daily low dose tidalafill to try and keep blood flowing. I’m hoping to get my sex life back at some point but who knows?🤷🏼‍♂️

All the best to you,

Derek

User
Posted 05 Sep 2024 at 12:00

Ross,

When did your last HT injection run out (i.e. when would the next one have been if you hadn't stopped)?
Where are you with Testosterone return? Has it been measured?
Have you been doing penile physio/rehab while you've been on HT?

I would not necessarily take what an oncologist says about sexual function very seriously - I have met many who have no idea.

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK