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Which route to choose ? - Erectile dysfunction (ED)

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User
Posted 30 May 2016 at 17:21

Mike Bond  63 years old ... very fit and good nutrition. gym swim or paddle kayak 3 to 4 times a week 2 to 3 hours at a time.

Since 1 st psa reading ( 7) & biopsie in 2010  I have been monitored via PSA and finger job every 6 months .

Recent psa was 14 , finger job no problem , no problems with urine , ED or anything else .

 

Following a MRI scan last week I have been told that Active Surveillance stage has now failed and we need to consider which remedy to follow.   I have a bone scan lined up ( not expecting any problems ) and a bowel examination to establish a small blip picked up on the MRI.

 

My question   1) How long have I got before I need to decide .... 

                     I am eligible for Prostate removal by robot  

                     Bracy    , Radio Therapy with Hormone treatment and HIFU as a clinical trial .

 

2) am concerned about ED   and wondered if anybody could comment on which is the least likely to effect this. 

Thank you 

Mike Bond

User
Posted 30 May 2016 at 19:29

Hello Mike and Welcome to the site.

It's been a bit quiet this weekend probably because it's a Bank Holiday but I am sure somebody will be along to advise you.

What sort of Brachytherapy was offered to you. Low dose permanent seed or Temporary High dose?

My husband (at the then age of 72/3) opted for Low dose seed when he had to come of AS. Hasn't had any long term problems with urine, infection etc. As for ED, well it would be difficult to say since he was already having a few problems and they were probably more age related than anything else. Sildenafil now helps.

Difficult to say what would be best for any particular person as our men don't all follow the same pattern, even if the treatment is the same.

Hang in there and the others will be along with their take on it all.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2016 at 23:52

Hi Mike,

You have been told that Primary treatment is now advisable and it would seem your choice is as you posted. You really need to ask your medics on how quickly they feel this should be done. We are not able to answer this question. Which treatment to opt for can depend on the type of cancer you have, where it is located and how much there is of it and how aggressive it has become. Most men want what the consultants consider is the best treatment for the patient as an individual with the main objective being 'cure'. Some men want to prioritise erection and sexual function even over cure and then other men will want to have a treatment that minimises the possibility of incontinence. It can be a difficult decision.

In your shoes I would ask for a complete diagnosis of my situation as it is now and discuss with consultants of the specialities offered. You might have quite a wait to see a HIFU consultant unless you see one privately but seeing the other consultants sooner may help you decide if any delay is acceptable.

Whilst seeing the surgeon, you could ask whether he/she feels the nerve bundles can be preserved on one or both sides as this affects the risk of ED.

Barry
User
Posted 28 Jun 2016 at 15:06

I believe man with pc and ukusabt had HIFU.

If you go to "Show Search" on this conversation page you can put in HIFU in the search box and it brings up other people who have asked.

Just click on any avatar you are interested in and it may help.

As you know I told you my other half had permanent brachytherapy but that was stand alone without prior treatment apart from AS.

We can't control the winds - but we can adjust our sails
User
Posted 29 Jun 2016 at 00:08

I think manwithpc had HIFU as salvage treatment. There isn't much data on it as a primary treatment but if you are offered a trial place and feel comfortable with taking a risk on other treatment being needed later then go for it - you will be treading a path that others will benefit from in the future.

John's first choice would have been brachy but he didn't meet the criteria at our local hospital - they don't offer it to 'young' men and he was only 50 at that point. If they had been willing to do it, I don't think he would have hesitated.

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

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User
Posted 30 May 2016 at 19:29

Hello Mike and Welcome to the site.

It's been a bit quiet this weekend probably because it's a Bank Holiday but I am sure somebody will be along to advise you.

What sort of Brachytherapy was offered to you. Low dose permanent seed or Temporary High dose?

My husband (at the then age of 72/3) opted for Low dose seed when he had to come of AS. Hasn't had any long term problems with urine, infection etc. As for ED, well it would be difficult to say since he was already having a few problems and they were probably more age related than anything else. Sildenafil now helps.

Difficult to say what would be best for any particular person as our men don't all follow the same pattern, even if the treatment is the same.

Hang in there and the others will be along with their take on it all.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2016 at 21:25

Hi Mike welcome to our group. I think you will have to wait for your results and treatment offered before any decision can be made about which route to take, all the best Andy

User
Posted 30 May 2016 at 23:52

Hi Mike,

You have been told that Primary treatment is now advisable and it would seem your choice is as you posted. You really need to ask your medics on how quickly they feel this should be done. We are not able to answer this question. Which treatment to opt for can depend on the type of cancer you have, where it is located and how much there is of it and how aggressive it has become. Most men want what the consultants consider is the best treatment for the patient as an individual with the main objective being 'cure'. Some men want to prioritise erection and sexual function even over cure and then other men will want to have a treatment that minimises the possibility of incontinence. It can be a difficult decision.

In your shoes I would ask for a complete diagnosis of my situation as it is now and discuss with consultants of the specialities offered. You might have quite a wait to see a HIFU consultant unless you see one privately but seeing the other consultants sooner may help you decide if any delay is acceptable.

Whilst seeing the surgeon, you could ask whether he/she feels the nerve bundles can be preserved on one or both sides as this affects the risk of ED.

Barry
User
Posted 31 May 2016 at 08:51

Hi Mike

You will need a lot more info. For instance, I had a template biopsy, went into retention, so was told Brachytherapy was not suitable for me. Whilst going through all the tests, time seems to stand still; be patient and hopefully you'll be able to make a more informed choice of treatment with more information at your fingertips.

Paul

Stay Calm And Carry On.
User
Posted 31 May 2016 at 17:46

Hi Mike

Maybe I misread..

Have you have a very recent biopsy  ?    (or nothing since 2010, what did that show ?)

I had zero symptoms, not as active as you !  Quite fit, visit GP maybe once a year if that.    PSA 7.5   First and only biopsy Nov 2014 (Gleason 3+4)

Da Vinci RP in Feb 2015 .  

 

 

User
Posted 03 Jun 2016 at 15:44

Hi Mike

Having been on active surveillance since 2010 I am surprised that you have not had further biopsies to monitor how the cancer is progressing.

I think you need to speak to your consultant and book in for another template biopsy.

When you have had that ask for a copy of the results.

You will receive a Gleason score where the 1st No is the predominant grade of cancer. The higher the number the more aggressive the cancer is. i.e Gleason 3+4 , Gleason 4+3 etc. You will also get a T rating where T1-T2 the cancer is confined to the prostrate and T2-T3 where it has spread outside. Also you will get an N stage where N0 indicates no spread into the lymph nodes and an M stage where M0 indicates metastasis and no spread to bones.

I cannot think a consultant can recommend any form of treatment based on the results of a 2010 biopsy.

When you get your results re-post because these figures are important in order to make a decision.

I personally had low dose brachytherapy in 2015 . I was only in hospital 1 day and the side effects so far are minimal.

Looking forward to hearing from you

Banjoman

 

 

User
Posted 28 Jun 2016 at 14:24

Hi , Thank you all for your guidance and words of wisdom .

All my scans , tests , etc are complete and the cancer is contained locally and on on side of the prostate .

I have a meeting on 7th July to decide .

 

I am keen in HIFU     , clinic trail at London Hospital . Feel it is quick and recovery sounds fast . Not much info on ED though so if anybody has personal experience please let me know.

 

Next choice is Hormones for 3 months to reduce prostate ,and then Permanent Brachy..

Again ED results sound more positive than RP .

Read all the literature , spoken to people/ person contacts who have made different choices .

So any more feedback positive and negative  on after effects of HIFU   and Permanent Brachy would be usefull .

Thanks 

 

Mike Bond 

User
Posted 28 Jun 2016 at 15:06

I believe man with pc and ukusabt had HIFU.

If you go to "Show Search" on this conversation page you can put in HIFU in the search box and it brings up other people who have asked.

Just click on any avatar you are interested in and it may help.

As you know I told you my other half had permanent brachytherapy but that was stand alone without prior treatment apart from AS.

We can't control the winds - but we can adjust our sails
User
Posted 29 Jun 2016 at 00:08

I think manwithpc had HIFU as salvage treatment. There isn't much data on it as a primary treatment but if you are offered a trial place and feel comfortable with taking a risk on other treatment being needed later then go for it - you will be treading a path that others will benefit from in the future.

John's first choice would have been brachy but he didn't meet the criteria at our local hospital - they don't offer it to 'young' men and he was only 50 at that point. If they had been willing to do it, I don't think he would have hesitated.

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

 
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