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

Notification

Error

Radiotherapy or Prostatectomy

Email this conversation Print this conversation
User
Posted 11 Feb 2024 at 13:50

I am 70 years old quit fit, walk 3miles a bay swim 2 times a week and rid my motorbike whenever the weather permits. I have been diagnosed with PC Gleeson 3-4 don’t know which option to take, I don’t have a problem with the operation of removal of prostrate but I am terrified of the side effects, especially the incontinence. For this reason I am seriously considering radiotherapy. I keep swinging from one to the other, seems the more I read the worse the decision gets, any help PLEAS.

 

User
Posted 11 Feb 2024 at 13:50

I am 70 years old quit fit, walk 3miles a bay swim 2 times a week and rid my motorbike whenever the weather permits. I have been diagnosed with PC Gleeson 3-4 don’t know which option to take, I don’t have a problem with the operation of removal of prostrate but I am terrified of the side effects, especially the incontinence. For this reason I am seriously considering radiotherapy. I keep swinging from one to the other, seems the more I read the worse the decision gets, any help PLEAS.

 

User
Posted 11 Feb 2024 at 16:20

Hi Mal,

Welcome! I don’t know your staging but what I would say is that it is likely that both treatments will have a similar outcome as far as the cancer is concerned, which is why it’s really down to which will give you the worst side effects. You’re obviously very fit so you should cope well with surgery. Yes, incontinence could be an issue as will ED. You don’t say whether the Radiotherapy will be accompanied by Hormone Therapy. If so taking this path is no walk in the park…for some people anyway, others get off lightly. Me? I’m one of the unlucky ones and have had significant side effects from HT, however it’s hasn’t stopped me from getting on with my life and having fun.

With RT you can pretty much carry on with your life during RT although some people get very fatigued. There are many possible side effects from HT, which you might be on for up to 3 years.

With surgery, you will need some time to recover fitness…it seems to vary very much from one person to another…as does the incontinence issue. If your staging indicates that it has pushed through the capsule I would say you have more chance of requiring SRT at some point.

If you go down the RT route it’s important to remember that if it doesn’t kill all the cancer it is likely you’ll be on HT for life.

It’s not an easy decision but the best advice I can give you (if you have time) is to find out if there is a local Cancer support Group such as Maggies. If there is, go along and speak to the others, I know from  my Maggies Group that that many men have made there decision after talking to other members of the Group.

Good luck with whatever path you choose.

Derek

User
Posted 11 Feb 2024 at 16:45

Active surveillance didn't go too well for me, but that was largely due to poor monitoring of the disease.

Have you just got a single lesion, and is it safely contained in the prostate capsule. If so, and you were deemed suitable for AS, coupled with your fear of side effects from radical treatment; I might be tempted to take the AS option you can always change your mind at a later time.

I don't want to complicate your decision making but I don't know why you're so convinced that you'll definitely need surgery or RT?

There are others who will disagree me and a lot depends how you feel about being able to cope with AS. It's just a thought.

Edited by member 11 Feb 2024 at 16:47  | Reason: Typo

User
Posted 17 Feb 2024 at 16:53

Unfortunately I haven’t been offered brachytherapy .only RP or RT

User
Posted 17 Feb 2024 at 19:19

When you ask the question about RP or RT the best you will get in a forum like this is individual member's experiences. For either option there is a spectrum of outcomes ranging from very successful to disappointing. Like me you are lucky that you have a choice but even then it is not easy.

Following my diagnosis, MRI, biopsy etc my urologist assured me, as much as anyone can be certain, that my cancer was low grade, Gleason 7, and with very clear negative margins. He said he was confident to offer me surgery because, in spite of my age, I was very fit with no other health issues. But he advised me strongly to see an oncologist to get his opinion which I did and chose prostatectomy. I think I made the right choice, 12 years ago, even though I am 99.9% continent, leak when sexually excited and at orgasms.  My nerves were spared but because of my age erections are useless. However we managed to re-establish our sex life using VEDs; of course there are other options for helping with ED. In the hands of a good surgeon, with some luck, you stand a very good chance to retain your continence. Your erections post surgery will probably not be as good as pre-surgery. There has been a tremendous progress in RT/HT treatments which are certainly worth considering - I obviously can't comment about HT/RT options, but there are many others here who've  a lot of experience.

I hope you are able to feel comfortable with whatever choice you make.

 '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

 

 

Show Most Thanked Posts
User
Posted 11 Feb 2024 at 14:21

Hi Mal.

Welcome to the forum. I'm sorry you've had to join us but I'm glad you have.

Were you not offered active surveillance?

Adrian

User
Posted 11 Feb 2024 at 14:57

It was an option but I through I would need treatment sooner or later best get it done. One way or the other   

User
Posted 11 Feb 2024 at 16:20

Hi Mal,

Welcome! I don’t know your staging but what I would say is that it is likely that both treatments will have a similar outcome as far as the cancer is concerned, which is why it’s really down to which will give you the worst side effects. You’re obviously very fit so you should cope well with surgery. Yes, incontinence could be an issue as will ED. You don’t say whether the Radiotherapy will be accompanied by Hormone Therapy. If so taking this path is no walk in the park…for some people anyway, others get off lightly. Me? I’m one of the unlucky ones and have had significant side effects from HT, however it’s hasn’t stopped me from getting on with my life and having fun.

With RT you can pretty much carry on with your life during RT although some people get very fatigued. There are many possible side effects from HT, which you might be on for up to 3 years.

With surgery, you will need some time to recover fitness…it seems to vary very much from one person to another…as does the incontinence issue. If your staging indicates that it has pushed through the capsule I would say you have more chance of requiring SRT at some point.

If you go down the RT route it’s important to remember that if it doesn’t kill all the cancer it is likely you’ll be on HT for life.

It’s not an easy decision but the best advice I can give you (if you have time) is to find out if there is a local Cancer support Group such as Maggies. If there is, go along and speak to the others, I know from  my Maggies Group that that many men have made there decision after talking to other members of the Group.

Good luck with whatever path you choose.

Derek

User
Posted 11 Feb 2024 at 16:45

Active surveillance didn't go too well for me, but that was largely due to poor monitoring of the disease.

Have you just got a single lesion, and is it safely contained in the prostate capsule. If so, and you were deemed suitable for AS, coupled with your fear of side effects from radical treatment; I might be tempted to take the AS option you can always change your mind at a later time.

I don't want to complicate your decision making but I don't know why you're so convinced that you'll definitely need surgery or RT?

There are others who will disagree me and a lot depends how you feel about being able to cope with AS. It's just a thought.

Edited by member 11 Feb 2024 at 16:47  | Reason: Typo

User
Posted 11 Feb 2024 at 23:15

It is good that you exercise regularly and being fit will will be of benefit whether go with Surgery although both options mean what you can do will be reduced, for HT/RT for longer as this treatment works over a longer time.

There are pros and cons for both treatment options and I would suggest you find out more how you might be affected in your own circumstances before rushing into making a decision. You should ask your Consultants whether they feel your cancer is contained within your Prostate. Does the Surgeon believe he can leave you the the nerve bundles fully or partially intact. If you Opt for RT how many sessions (called fractions will you have and will this be on the latest Linacs? Also, how long would be the planned HT element? This can sometimes be reduced or increased depending on how you respond or react to HT.

All forms of treatment have a number of failures so you might need both treatment anyway. On the other hand it is possible that you could go on AS for a period and then have radical treatment and thereby defer treatment side effects.

Lastly, although it has not been mentioned, (men are not often told this), you might be a suitable candidate for a form of Focal Treatment which normally has milder side effects but sometimes needs to be repeated.

So in conclusion find out as much as possible about your own PCa and various treatment options before making your decision. Some members have found it helpful to consider the tool kit as here. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 11 Feb 2024 at 23:20  | Reason: to highlight link

Barry
User
Posted 12 Feb 2024 at 10:39

Hi Mal,

sorry to hear about your diagnosis.  It's very difficult being offered a choice, in many ways I was lucky in that I wasn't given a choice as my own PC was too far advanced for surgery at the time I was diagnosed.  So I had chemo, followed by radiotherapy, and am on lifelong hormone therapy.

I'm now 5 years on since diagnosis and continue to enjoy a very good QoL, I love to walk 3 - 4 miles per day and get out on my motorbike whenever it's dry and above freezing.  Personally, I've had virtually no side-effects from the HT or RT apart from loss of libido (I expected the latter) but I understand that this varies from person to person.

As others have put in their replies above, question your consultant about the outcomes of surgery and you can then make an informed decision. 

 

   

User
Posted 12 Feb 2024 at 11:30

Hi Mal

It's a tricky position to be in isn't it. Difficult to advise without knowing more details of your diagnosis, but for what it's worth I am equally worried about the prospect of the side effects (particularly of RP) so have opted to go on AS for a while. I was originally told I was 3+4=7, but then a second opinion was given of 3+3=6 (so probably borderline is my guess). I have it in both lobes, with 11 out of 19 cores positive, including one sample with Crib/IDC present.

I think it is pretty likely I will need to get treatment before long, as my PSA is rising. So far it has been 5.2, 5.9 and 6.8. But, I figured if I could safely put off treatment and side effects for a while, it was worth doing so.

Good luck with whatever you decide, and keep us in the loop.

Ian. 

 

User
Posted 12 Feb 2024 at 15:17

I visited the surgeon last Friday, he is happy to perform the surgery. I have an appointment with radiologist this week and I will make my decision than.

User
Posted 12 Feb 2024 at 16:59

Originally Posted by: Online Community Member

I visited the surgeon last Friday, he is happy to perform the surgery. I have an appointment with radiologist this week and I will make my decision than.

It’s worth bearing in mind that some consultants tend to promote their own type of treatment is best. My Onco didn’t however, when I asked him what treatment would he would choose if he were in my position. he replied ‘Surgery! but that’s not an option for you’. Not the best bedside manner.🤷🏼‍♂️

All I would say is that DONT underestimate the side effects of HT. I’m really pleased for Craig that he is on lifetime HT but doesn’t suffer any side effects other than the obvious. Many men however do suffer side-effects that can affect their QOL and can be quite challenging mentally. I thought lack of libido would cause me frustration, but it doesn’t it just makes me sad because I just don’t have any interest in sex(although you can still have a sex life if you are willing to experiment).

On the other hand, still having libido but also having ED I would imagine could be quite frustrating.

I actually think you are lucky having a choice, I wish I had been given that. It’s a difficult one to make but at least you know it’s YOUR decision.

Derek

User
Posted 16 Feb 2024 at 17:10

I have been told I can have RT with no hormone therapy needed. What kind of side effects should I expect?

User
Posted 16 Feb 2024 at 17:26

I found radiotherapy a breeze if no hormone therapy needed happy days 👍

User
Posted 16 Feb 2024 at 22:06

The usual side-effect of RT is tiredness / fatigue towards the end of the treatment (it will probably involve 15 or so sessions over a period of 3 to 4 weeks), but this should pass within a week or so after the treatment's finished.  Some people get a bit of diarrhoea / upset stomach, and some get localised skin soreness.  

User
Posted 17 Feb 2024 at 16:30

Hi Mal,

I took the brachytherapy route with PSA 2.19 and Gleason 3+4=7 in September 2016  with 5 out of 20 cores positive at 70 years old. I had had a private medical for the renewal of my 7.5 ton driving licence  and it picked up microscopic blood in my urine. I think i have been very lucky with no side affects apart from Ed and i get 4 viagra pill a month to help.You can click on my Avatar to see my progress but no real problems in it.

Regards John.

User
Posted 17 Feb 2024 at 16:53

Unfortunately I haven’t been offered brachytherapy .only RP or RT

User
Posted 17 Feb 2024 at 19:19

When you ask the question about RP or RT the best you will get in a forum like this is individual member's experiences. For either option there is a spectrum of outcomes ranging from very successful to disappointing. Like me you are lucky that you have a choice but even then it is not easy.

Following my diagnosis, MRI, biopsy etc my urologist assured me, as much as anyone can be certain, that my cancer was low grade, Gleason 7, and with very clear negative margins. He said he was confident to offer me surgery because, in spite of my age, I was very fit with no other health issues. But he advised me strongly to see an oncologist to get his opinion which I did and chose prostatectomy. I think I made the right choice, 12 years ago, even though I am 99.9% continent, leak when sexually excited and at orgasms.  My nerves were spared but because of my age erections are useless. However we managed to re-establish our sex life using VEDs; of course there are other options for helping with ED. In the hands of a good surgeon, with some luck, you stand a very good chance to retain your continence. Your erections post surgery will probably not be as good as pre-surgery. There has been a tremendous progress in RT/HT treatments which are certainly worth considering - I obviously can't comment about HT/RT options, but there are many others here who've  a lot of experience.

I hope you are able to feel comfortable with whatever choice you make.

 '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 17 Feb 2024 at 22:26

Originally Posted by: Online Community Member

Unfortunately I haven’t been offered brachytherapy .only RP or RT

 

I was offered the same as your good self - and then was thrown when the oncologist offered LDR Brachytherapy at the time of the information meeting.  I thought that the MDT had considered this as a group PRIOR to the diagnosis letter but obviously not.  It is a very strange, wavering world.  Caveat Emptor.  

User
Posted 17 Feb 2024 at 23:19

Originally Posted by: Online Community Member
I have been told I can have RT with no hormone therapy needed.

That sounds like a good option. You won't get the problems sometimes associated with RP, RT is slightly tiring but painless and you will recover from the RT in a few months [it's not instant].

Offering RT without HT is relatively new but now becoming more common as a result of improvements in RT accuracy and computer guidance systems.

Jules

User
Posted 07 Mar 2024 at 15:09

Have decided on surgery and have been given a date middle of March. Any advice on what I need to take with me. Thanks Mal

User
Posted 07 Mar 2024 at 15:16

Mal

I wore snug but not tight elasticated short type underwear, it stopped the catheter from moving around to much, I also had a pad in my underwear to pick up any bypassing of urine.

Just in case the catheter makes the eye of the penis sore, instilagel or hydrocaine are available from a pharmacist without prescription at most chemists except Boots, who require a prescription. The above gels are designed for catheter insertion and maintenance they contain , anesthetic, antiseptic and lubrication. The hospital may give you some, it is a couple of pounds a syringe, you may not need it. Slight leaking of urine and blood from the penis can happen even with a catheter in, particularly when passing a motion.

Get a packet of your favourite biscuits for a midnight snack in hospital.

A bucket is often suggested, but medical advice is that the catheter should be supported not just left in the bottom of the bucket. I have never had a night bag leak, but did once disconnect the night bag before turning the leg bag tap off. Get an extra thigh strap from the hospital, attach the night bag tube to the leg bag outlet then attach the night bag tube to your ankle with the strap, it helps reduce the risk of pulling on the joints. PJ bottoms also help save any tangles. 

Hospital should provide ear plugs and eye mask.A ward can be very noisy at night. The guy opposite me had the noisiest carry bag in the world.

Try to avoid constipation

The following conversations has lots of ideas.

 

https://community.prostatecanceruk.org/posts/t29021-Practical-preparation-for-surgery#post278042

https://community.prostatecanceruk.org/posts/t29907-RP-surgery-tomorrow#post287726

 

Thanks Chris 

 

Edited by member 07 Mar 2024 at 15:20  | Reason: Not specified

 
Forum Jump  
Email this conversation Print this conversation

Similar Topics

Radiotherapy or Prostatectomy? by Tony Emms
in Start here!

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