Worry about meeting the consultant on Monday

User

Posted 07 Mar 2022 at 16:57

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 19:12

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 09:16

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 19:01

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 19:56

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 01:28

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 02:15 | Reason: Not specified

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

User

Posted 09 Mar 2022 at 06:38

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 07:21

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 09:03

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 09:15

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 09:56

Originally Posted by: Online Community Member

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 09:59

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 09:31

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 10:32

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 12:26 | Reason: clarification

User

Posted 12 Mar 2022 at 11:35

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 12:19

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 14:11

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 14:15

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 14:17

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 17:35

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

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