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Worry about meeting the consultant on Monday

User
Posted 07 Mar 2022 at 15:57

Originally Posted by: Online Community Member
sorry, one other question. The surgeon mentioned that my husbands prostate is quite small. Is that good or bad?

 

It's neither good nor bad; it certainly has no impact on the success of prostate cancer treatment.

Cheers,

Chris

 

User
Posted 07 Mar 2022 at 18:12
The surgeon showed us the MRI scan - first time we saw that - and the cancer. I am amazed at how little it is. I expected it to be a lot bigger, but it is only a tiny spec (the surgeon actually circled it on the screen) in the botton of the right side
User
Posted 08 Mar 2022 at 08:16
To the black spawn of hell that calls itself prostate cancer

the man you invaded has called the lancer

the robot, Da Vinci by name

all rejoice in his fame

is called to end your existence for now and ever

may you rot in hell forever

User
Posted 08 Mar 2022 at 18:01
went to a meeting of the hospital support group today. Found it very useful, but a bit amazing that the gents that had had surgery were all advised by the urologist to have surgery first and leave the HT/RT route as a back up in case of recurrance. Luckily one gent had his RP 5 years ago and did not need any follow up treatment. The fact that the doctors expect that there could be a recurrance is not very reassuring.
User
Posted 08 Mar 2022 at 18:56
About a third of men who have an RP go on to have salvage radiotherapy. It's primarily an issue for those who have either aggressive cancer or cancer which is close to breaking out of the prostate, neither of which applies to your husband.

Cheers,

Chris

User
Posted 09 Mar 2022 at 00:28

Originally Posted by: Online Community Member
It's primarily an issue for those who have either aggressive cancer or cancer which is close to breaking out of the prostate, neither of which applies to your husband.

Cheers,

Chris

Chris, the OP said that the urologist had advised that only partial nerve sparing would be possible, so it is presumably quite close to the edge? 

Edited by member 09 Mar 2022 at 01:15  | Reason: Not specified

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

User
Posted 09 Mar 2022 at 05:38

Hi LynEyre, according to the surgeon it is close to the edge but fully contained in the prostate.  The only reason he recons he can only do nerve sparing on one side is to make sure there is a positive margin.  But we may no go this route, husband has relooked at Brachytherapy and is now undecided.  

My personal opinion is he should speak to the oncologist and get all the info, then we go on a nice weekend away and have fun (without any mention of the enemy) and he then makes his decision.  

 

 

User
Posted 09 Mar 2022 at 06:21
Could I have your definition of incontinent, please?

Reason I am asking is to me being incontinent means you need 1 pad or more a day whereas to the surgeon we met being incontinent means using 2 pads or more a day and using just 1 pad a day is being continent.

User
Posted 09 Mar 2022 at 08:03
A number of men on here have said that they've been told by their surgeon that using one pad a day is regarded as continent, so it seems to be a common definition.

It's one reason I preferred the HT/RT route, which doesn't commonly result in incontinence.

Chris

User
Posted 09 Mar 2022 at 08:15
At the support group meeting we spoke to some gents (the nurse running the group introduced us) and all of them were saying they had problems with ED and the hospital was not really doing anything about it (one of them about my husbands age of late 60 who had RP 5 years ago and is planning to run a 10K to raise funds so quite fit) Seems that will be a case of this charity to get help.
User
Posted 09 Mar 2022 at 08:56

Originally Posted by: Online Community Member

Hi LynEyre, according to the surgeon it is close to the edge but fully contained in the prostate.  The only reason he recons he can only do nerve sparing on one side is to make sure there is a positive margin.  But we may no go this route, husband has relooked at Brachytherapy and is now undecided.  

My personal opinion is he should speak to the oncologist and get all the info, then we go on a nice weekend away and have fun (without any mention of the enemy) and he then makes his decision.  

To make sure there is a negative margin, not a positive margin. 

As I said above, the cancer is close to the edge - chance of recurrence is therefore higher

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

User
Posted 09 Mar 2022 at 08:59

Originally Posted by: Online Community Member
Could I have your definition of incontinent, please?

Reason I am asking is to me being incontinent means you need 1 pad or more a day whereas to the surgeon we met being incontinent means using 2 pads or more a day and using just 1 pad a day is being continent.


The NHS / BAUS definition of 'continent' (in terms of the surgical outcomes that uro-surgeons have to publish) is needing one pad per day or less.   

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

User
Posted 12 Mar 2022 at 08:31
Hi Everybody, hope you can help me. I have checked all the treatment options I can find (RP, RT, Brachy (LDR + HDR) and Cryotherapy that are available to the ordinary person (normal income). 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). Have I overlooked any treatment options?

Thank you

User
Posted 12 Mar 2022 at 09:32

When I was weighing up treatment options, I called Macmillan to ask about the chances of incontinence after radical prostatectomy. The answer was clear - I was told it is a 100% certainty. (I recall that she did say that some improvement was possible in the months  post-surgery, and even probable). That (along with a reluctance to have surgery) was why I opted for hormone therapy then radiotherapy. But is treatment at a clinic in Germany a realistic option? I think you would have to pay for Nanoknife treatment in Germany as a private patient, wouldn't you? And if so, you would be looking at thousands of euros for the treatment, plus travel and other hospital costs.  I can't see the NHS funding it when they have viable alternatives available in this country.
Hermit

Edited by member 12 Mar 2022 at 11:26  | Reason: clarification

User
Posted 12 Mar 2022 at 10:35

Hi DW,

I think the following have been ruled out already: Active Surveillance, HIFU, Laser Ablation. I'm only mentioning them to make sure you have a full list and everything has been considered.

In your list you have mentioned RT for clarity you should call this External Beam RT or EBRT: to distinguish it from Brachy which are still forms of RT. You should also add HT to the list, because it could be included with any of the other treatments.

As your husband already has ED, I think you will have to accept this won't be getting better on its  own and he might even have to look at penile implants if he wants to. Of course telling your husband that you want to use him like a sex toy may cause issues in your relationship.

I think the definition of continent as using one or less pads per day is useless for someone who wants a normal life. Because the threshold had been set so low, any official statistics are meaningless to anyone who want to remain continent by the lay man's definition i.e. no leaks.

I think RP has the highest risk of incontinence and if you get it it would ruin your life, but it is probably not as common as this forum would lead you to believe. I think the chances of incontinence from any of the RT treatments is vanishingly small.

Dave

User
Posted 12 Mar 2022 at 11:19

I am 64 and had surgery on 23/12 and although I was 30% incontinent for 4/5 weeks after surgery and was wearing a Tena  No.2 pad every day, it improved after then and for the last 2 weeks or so I have been virtually continent (99.99%). I only have a slight leak when I lift something very heavy.

Two people I know who had surgery in 2010 were both fully continent  within 6 months of surgery and although one , age 80, now has a little leakage that is probably more down to his age rather than because of the surgery. A number of people on this board who have undergone surgery have also posted that after a few weeks or months they are back to full continence.

 

Ivan

User
Posted 12 Mar 2022 at 13:11

No, treatment in Germany is unfortunatey not a realistic option as it is between 17000 and 20000 Euro.  Wish it was available.

 

User
Posted 12 Mar 2022 at 13:15

Hi Davediag2018 - I will tell him I might want to use him as a sex toy, would make him laugh. He has a great sense of humour.

User
Posted 12 Mar 2022 at 13:17

OhDear, thank you for your words of encoragement.  Knowing that it is possible will make the other half feel a lot better.

User
Posted 12 Mar 2022 at 16:35

Originally Posted by: Online Community Member

I think the definition of continent as using one or less pads per day is useless for someone who wants a normal life. 

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

 

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

User
Posted 19 Mar 2022 at 10:22

No, when getting anything new: medicine, TV, car, electric drill... Open box, use item. Leave instructions in box or unopened on table. In six months time find button or feature and say "I never knew it did that".

Dave

User
Posted 21 Mar 2022 at 08:32
I have read in one of the threats that the gent in question recons the current available treatments are bearable.

I know that is a very English reaction, but it is the wrong reaction. Why would anybody want to make improvements to the available treatments if the patients are happy with the current standard?

There is only one way to get improvements, complain, complain and complain again. And then complain some more.

Think about this - would you be happy for your son/grandson to go through the current available treatments?

User
Posted 21 Mar 2022 at 09:49
You are not being reasonable. It isn't possible for all cancer treatments to be pleasant.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Mar 2022 at 09:50

Originally Posted by: Online Community Member
Think about this - would you be happy for your son/grandson to go through the current available treatments?


Yes, entirely happy. I'm not just pretending that it was all very tolerable; it really was!

What good would complaining do? It's not going to change anything, and is unfair to the hard-working medical staff who are doing their very best to treat you. 

Cheers,

Chris

 

User
Posted 21 Mar 2022 at 10:11

Originally Posted by: Online Community Member
... Why would anybody want to make improvements to the available treatments if the patients are happy with the current standard?

There is only one way to get improvements, complain, complain and complain again. And then complain some more...

Well they are improving the treatments certainly in effectiveness if not primarily in tolerability. So the system is working currently.

Dave

User
Posted 21 Mar 2022 at 10:33
Hello DW. I’m not sure what you are expecting. As a cancer survivor myself, the treatment is doable. Not pleasant at times, but far better than the alternative. The cancer pathway in the NHS is Gold standard. If I was you I would start to look at the positives rather than the negatives. Your husband has options to treat his cancer. Some don’t.
User
Posted 21 Mar 2022 at 11:48

So who should we complain to - God, for allowing cancer? The government? The NHS? Drugs companies? The hospital providing treatment? The consultant? The GP?

And what should we complain about? The fact that radical prostatectomy (which counts as major surgery, keyhole or not) has certain unpleasant and unwanted side effects? That hormone therapy using powerful drugs has side effects? All drugs have side effects. That electron beam therapy can cause some unpleasant after-effects? Hitting a part of the body repeatedly with high-energy tightly focused  X rays will do that!

This forum exists to provide information, advice  and support from those suffering from prostate cancer, or being investigated for it, and for their relatives. How does your most recent post do that? 

Hermit.

User
Posted 21 Mar 2022 at 12:03

I agree fantastic work by all at our nhs hospitals keeping us all here off course not pleasant at times need to be ruthless at times to try to cure but my weekly visits to the cemetery  a reminder how greatful we should be off the tenacity and the fantastic care provided by our nhs I for one is truly greatful 👍

User
Posted 21 Mar 2022 at 12:41

I know that not all cancer treatment is comfortable, but if we encourage the researchers to come up with better ways and NICE to approve the better ways and drugs that keep people alive then our sons might have more pleasant forms of treatment to look forward too

 

User
Posted 21 Mar 2022 at 12:43

not complaining about the hard working medical staff, just letting them know as without people telling them they cannot pass the information upwards etc.  you cannot expect them to read your mind. 

 
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