new here and slightly terrified

Hello BJS and welcome to the site

Have you obtained "The Toolkit" from this site.
It has lots of information on all aspects of Prostate Cancer, including emotions etc.

Well worth applying for. Just ring one of the nurses on this site and ask for a copy.

Did your husband go for Robotic surgery because it was the only option he was given or was it a choice made by him. You say he's seen the urologist, oncologist and then the surgeon. Did neither the urologist or oncologist make any suggestions or did they think surgery was the best route to take?

As far as incontinence and ED are concerned, they'll be many on here (well everyone actually!) who will tell you there is no hard and fast rule, ie choose this treatment and it's guaranteed they won't happen.

Try and make sure that if he does go down the route of surgery, that you are prepared at home with the practical stuff he'll need (even if only on a temporary basis. ie pads, protective bedding etc.

It would seem that most men react differently, even if the grading and treatment is the same. One might be continent virtually straight away, another might never get it back. The same with ED. Have you been able to discuss this side of things with him and reassure him?

You will find it hard to keep up a cheerful front for him. All us wives try that but it is very draining. All you can do is your best.
If he wants to talk about it all to you, then let him. It will be a great help to him. There are men on here who will tell you that their wives can't/don't want to discuss it. There are wives/partners on here who will say their other halves prefer to keep quiet and not talk about it at all. If neither of you communicates then obviously a lot gets left unsaid and that can lead to frustration and misunderstanding.

Just don't feel that you have to carry the burden alone. When it all gets too much (and believe me we really do understand how that feels) then come back to us and let us help.

As for people reciting their father, brother, uncle Tom Cobbly and all, well often it's their way of try to lift you and reassure you because they don't know what else to say. Try not to be offended by it.

It is irritating though when people say "Oh well, if you're going to get cancer then Prostate Cancer is one of the best to get because the success rate is so high"
Yeah, right. But to be one of that success rate you have to travel roads they couldn't dream of. They know no better.

He could start his pelvic floor exercises. Some people, including doctors, say it helps in the long run. He won't lose anything by practising them anyway.

Don't look for trouble, it may not happen. When you go to any of the appointments with him, take a note book and pen. Write down before you go, any questions you might want to ask. (You've probably been down these routes anyway since he was diagnosed in 2014 - so it's not new to you is it)
Formulating questions is helpful with the use of The Toolkit which is why we always go on about it.

I wish you both well. We are here for you both. Anything at all you want to know, just ask, somebody is bound to have experienced it.

Sandra

Edited by member 21 Mar 2016 at 14:13  | Reason: Not specified

I got so sick of people telling us it was the best cancer to get, and tales of their uncle who lived till he was 180. My husband was only 50 and it is terrifying to hear the word cancer, regardless of what type. I did learn a technique for the insensitive people though. My sister-in-law rallied us with the news that her very aged father-in-law had been operated on many years before and was'absolutely fine'. I asked her "how many incontinence pads does he get through each day and does he use a vacuum pump or injections to get an erection?" which was met with a stunned silence. Of course she had never discussed such personal matters with him and had no idea of the potential side effects. I liked the reaction so much, I came to use it quite regularly.

After John's cancer came back a couple of years later, I heard someone in the pub comment about it not being a big deal and John (unusually for him) reacted in similar fashion. It embarrassed the insensitive person but also resulted in some of our other friends wanting to know more and I am quite sure improved their awareness of the importance of getting PSA tests.

The most bizarre reaction was from one of John's staff who after John was diagnosed would hang around at the office door when he needed to check or discuss something. In the end J said "you can come in ... It isn't contagious" to which the guy replied "well you can't be sure of that can you?"

Edited by member 21 Mar 2016 at 15:22  | Reason: Not specified

I like all the racquet sports. They're something I really enjoy. Sadly I do not play squash now ( which I loved ) but still enjoy playing both tennis and badminton on a weekly basis.

You must understand that I have not had surgery so cannot advise you regarding that and playing tennis .

But on the morning of the day I started RT (and was 4 months into HT) I played 3 sets of tennis for over 2 hours . I gave it my all that day as I really did not know when I'd be playing again. I was given a good send off by all there that morning which was really great. Home for lunch and then I went to the cancer centre for the first of 37 fractions .

You'll need to take advice when it's possible to play after surgery, but for me it was about 2 months after RT finished. I really did not have the stamina nor inclination to play before . HT can be very tiring ( and still can be for me but far less so now ) but the RT fatigue had worn off by then.

My legs were still very 'dead' for 2-3 months so I knew when I'd overdone it . His body will tell him when it's time to stop playing. As long as he lets people know what to expect he'll be fine.

I play as a mid week member of a local club and I popped down to see everyone for coffee even if I couldn't play. Keeping in the social way is good for recovery even if it's frustrating that you can't play.

Initially I played one set upon returning and slowly built up to being able to play as normal within a few months.

Underarm serves are probably the best way to return to playing. Quite legal and often very effective. And avoiding overhead smashes too.

But the time will pass quite quickly and I'm sure that he'll be playing sometime later this year.

Similar situation for badminton too although there is far more stretching in that sport. This I left for about 7-8 months but that was fine as it was during the summer and I play badminton more as a winter sport.

The lads at the club asked me how I was coping too and one directly asked about ED . There was stunned silence and then some embarrassed laughter when I told them what I'm going through. Accompanied by the look of relief it wasn't happening to them ! One club member died of T4 PCa cancer about 3 years ago so there much goodwill for me from there.

Hoping this helps.

John

Until I had the biopsy I was led to believe that I'd be heading for surgery with T2b but this was then regraded as T3a. This meant I'd bypass surgery and go straight to HT and then RT.

Sometimes you can be aware of too much before something actually happens. You may find that it's not as bad as you might think it will be. I recall spending hours discussing with my wife how I might feel. What would fatigue actually be like ? Would my body really change whilst on HT ? Would RT side effects really be as awful as that ?

Well we've coped with it. It's not always been easy but we've got through the worst. We are more resilient now and more positive too. And I think that we are closer as well.

We try to enjoy everyday together.

John

I understand how difficult all of this is for you both as we felt the same. We took on board possible outcomes and decided on RALP. We knew possible side effects but decided to face what happened when it happened and not before. Following the op I decided to mot rush anything but to play the long game and do what felt right at the time for me. This approach has worked for me so far and seven months on there is nothing that I was doing pre op that I am not doing now. BUT I am one of the ones who is facing salvage therapy as I was never PSA Undetectable following surgery. We knew this was a possibilty and so are not upset by it and are using the same philosophy of deal with each problem when it arises, consider the possibilties and make a decision

I am lucky that I have the luxury of being retired but I am sure you will make the best decision between you.

Very best wishes to you both

Kevan