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Worry about meeting the consultant on Monday

User
Posted 12 Mar 2022 at 19:06

Originally Posted by: Online Community Member
With all of these there is the strong possibility of Incontinence and ED and other side effects.(the only one I found with almost 0 incontinence and “only" 5 - 10% ED is Nanoknife in Germany)

 

I imagine that the risk of ED with nanoknife is identical whether you have it in Germany or England. 

The more significant factor that you seem to be not really engaging with is the fact that if your OH opts for surgery, he has already been told that this will be only partial nerve sparing. So the comparisons you are making & asking for views on are like comparing apples and pears - if you did opt for focal treatment, which bit of the tumorous prostate would you like them to focus ... the bit near the edge? Focal treatment aimed near the nerve bundles is obviously going to have a higher risk of ED. Already having ED, focal therapy isn't going to cure it!

It seems you are still running ahead of yourself before you have all the diagnostic information needed.  

Edited by member 13 Mar 2022 at 02:25  | Reason: typo

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

User
Posted 12 Mar 2022 at 23:16

Originally Posted by: Online Community Member

With the greatest respect, Dave, I think there are many men here who would disagree with the view that one cannot lead a normal life while wearing a pad!

Best wishes,

Chris

Thanks Chris, it's true I shouldn't speak for others. I only have my own opinions, and I feel it would be troublesome for me.

Dave

User
Posted 13 Mar 2022 at 11:41

I would prefer my husband to wear a pad and be here! The worst case scenario would be a permanent catheter and I know there are many men on here who have permanent catheters and get on with life. Far from ideal, but will take it over the other option of him not being here at all.

User
Posted 13 Mar 2022 at 11:44

Hi LynnEyre, my OH has now decided that Brachytherapie could be an option.  We are waiting to see the oncologist to ask about it.  He will eventually have to decide which way he wants to go.  All I am trying to do is get everybodys experience and as much information as possible. I think that the literature provided could possibly be a bit optimistic?  My OH is aware that ED will be a problem afterwards and we are activly looking into ways to cope with it, but incontinence scares him.  

 

User
Posted 14 Mar 2022 at 12:53
OH is back to not telling me how he feels - I know he is worried as he cannot sleep which wakes me up (can tell from his breathing) Any advice how to help him (still waiting to get an appointment with the oncologist) and I know he is very worried about incontinence if he opts for RP? Does anybody have or know of any positive experience how long/short incontinence lasts? He is doing pelvic floor exercises as recommended by the physio and he is doing a lot of exercises and walking to loose more weight.
User
Posted 14 Mar 2022 at 13:03
You can easily use the 'search' facility on this site to find ansers to questions like this. For example -

https://community.prostatecanceruk.org/posts/t27973-Incontinence-recovery-time-scale-experiences

Hermit

User
Posted 14 Mar 2022 at 13:06
"In a study by another highly regarded open surgeon, Dr. William Catalona, the outcomes of 1,870 consecutive open RRPs (mean patient age of 63) were analyzed (Catalona 1999). Men were considered continent if they “did not require protection to keep outer garments dry.” Overall, of 1,325 men who had >18 month follow-up, 92% recovered urinary continence. This recovery varied slightly by age such that continence rates for men in their 40s, 50s, 60s, and 70s were 92%, 97%, 92%, and 87%, respectively. A recent notable study by Eastham and Scardino analyzed outcomes of 1,577 men after open RP (Eastham 2008). Continence was assessed by patient reported questionnaire or physician interview and defined as answering “no” to the question, “Do you wear any protective material because you leak urine?” Among these patients (mean age 58 years), 79% were continent at 12 months. Litwin et al. investigated the longitudinal recovery of quality of life (back to preoperative baseline) after open RRP in 247 men followed for up to 4 years after surgery (Litwin 2001). At 3, 12, and 30 months after surgery, 21%, 56%, and 63% of men recovered to baseline function and overall about 80% recovered to baseline urinary bother at about 8 months."

So the vast majority of men regain continence within a year.

Cheers,

Chris

User
Posted 14 Mar 2022 at 16:27

Hi,

Just a thought. HIFU costs about the same going private as RP but is said to be less problematic in terms of ED.

I know of a respected top ten RP surgeon who does both - so I suppose that's some form of recommendation.

User
Posted 14 Mar 2022 at 17:10

Problem is HIFU has been ruled out by the urologist due to postion of cancer.  It was one we were looking at both privatly and on the NHS (there are some specialist centres in southern England doing HIFU on the NHS)

 

User
Posted 16 Mar 2022 at 18:54
Seeing the onco on 1st April. Any suggestions which questions we should ask (apart from the obvious - got the Prostate UK leaflet about HT, RT and Brachytherapy). OH started reading the HT leaflet (first one out of the envelope when he opened it) saw the side and after effects and said “no way is he going that route”. Will see what happens
User
Posted 16 Mar 2022 at 19:28
DW, I went down the HT/RT route and found it all very tolerable. Three years after RT finished now and all's well. I'd be more than happy to have a chat to your husband about it on the phone if he'd like to do so. Drop me a PM if you're interested.

Cheers,

Chris

User
Posted 16 Mar 2022 at 20:10

I consider myself a lucky so and so. I had my massive prostate out. PSA went from 27 to "below 0.006" I wear a Tena One 5 months on as a precaution - so what. I am more likely to sleep all night than get up. Just going onto Tadalafil to help ED and grow a new head of hair! Compared to the dark days and weeks after initial diagnosis I feel reborn.

My 80yo father-in-law found out he had it following a blood test for something else. He was seriously hacked off that we made him go to his GP - as if it was OUR fault!  He had HT and RT a couple of years back now. His PSA is stable and we spent most of today picking Cheltenham horses. 

If you are diagnosed you are better off than the 17,000 men who are unknowingly walking around with a growing cancer inside them. Decide what treatment you want, commit to it and then get on with planning the rest of your life. 

 

User
Posted 17 Mar 2022 at 05:43

Hi Cheshire Chris, he is worried about the long term after effects like heart disease (his dad died of that in his 40s) and becomming diabetic.  His other worry is complete and utter loss of libido (he read some threats in this forum how some men lost complete interest in their partners).

As he has choices he is exploring all options.

Edited by member 17 Mar 2022 at 05:45  | Reason: Not specified

User
Posted 17 Mar 2022 at 11:50

DW, in the years I've been on this forum, I've never heard of anyone coming down with heart disease or diabetes as a result of HT. Yes, they're potential side-effects, but rare ones, and you'd probably not take any drug if you worry about rare side-effects! The overwhelming majority of men tolerate HT well with side-effects in the "annoying" rather than "troublesome" category.

Everyone suffers from loss of libido while on HT, but it really is a matter of realising that it's down to the drug and not a lack of affection for the OH.

Every treatment has side-effects. Your husband really does need to decide whether he finds the incontinence of RP or the loss of libido of HT/RT less troublesome. It's a choice we've all had to make. Both options are infinitely preferable to dying from prostate cancer for most men.

Best wishes,

Chris

Edited by member 17 Mar 2022 at 14:16  | Reason: Not specified

User
Posted 17 Mar 2022 at 14:03

Well said Chris totally agree the choice is yours had radiotherapy and on hormone therapy for 2 years obvious bone aches at times and loss off labido is probably the main drawbacks but the choice is yours as they say 🤔

Edited by member 17 Mar 2022 at 14:06  | Reason: Spelling error

User
Posted 17 Mar 2022 at 17:29

Cheshire Chris, you are so right.  But OH needs to decide which treatment option he prefers once we have seen the oncologist.  In the mean time I am his chief researcher and information gatherer and will pass any info on to him so he can decide which way to go.

User
Posted 17 Mar 2022 at 18:45

I went the radiotherapy hormone therapy route so far so good PSA 0.01from 24.9 1year on had a few problems on the way loose bowels for first 6months now ok  like I said few aches and pains but 60years old still doing a manual job but overall not too bad 👍

User
Posted 17 Mar 2022 at 19:22

Gaz61, that is great news - may you be feeling good for many many years

 

User
Posted 17 Mar 2022 at 20:52

Thanks very much and Good luck to you both 👍

User
Posted 19 Mar 2022 at 07:27
Gentle hint to all you gentlemen using little blue pills.

1.open packet

2. extract instruction leaflet

3. pass instruction leaflet to OH

4. OH will read instruction leaflet

5. OH will give synopsis of instruction leaflet

Happy Days

 
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