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What do I tell my kids?

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User

Posted 22 Jun 2022 at 12:01

To my understanding they’ll just whip the SVs out whilst there. They’ll also remove any lymph nodes that need it. Their aim will be to remove anything questionable.

User

Posted 22 Jun 2022 at 17:09

Best of luck Nick. It’s certainly not easy but I’m sure you will feel better when it is done. Also they won’t have to wait too long until they can see something happening to get rid of the cancer. Fingers crossed all goes well and best of luck with the surgery next week.

User

Posted 22 Jun 2022 at 20:35

The surgeon said that if the SVs are full of cancer, he wouldn’t take them out because he couldn’t do it without leaving cancer behind. Therefore no point in doing the op. Hopefully they can be removed though.

I’m N0 and the PET didn’t pick up anything else so don’t think anything else needs to come out.

But I suppose I won’t know until I come round on the ward.

cheers

User

Posted 22 Jun 2022 at 20:40

Thanks Elaine. Another change of plan, I’m telling them tomorrow night.

Also, Surgery now booked for the 11th, so we’re having a week away before then. I surf a lot with my son, so want to get some more waves in with him before I’m out of action for a while.

We’re hoping that the prospect of a week by the beach in Brittany will soften the blow a bit. Slightly hoping their teenage self absorption will work in our favour for once!

Thanks again

Nick

User

Posted 22 Jun 2022 at 21:05

Oh good, well atleast it will give you a week all together, that will hopefully help them. Enjoy your surfing 🏄‍♂️

With regards to the SV’s, does he mean if they have cancer he won’t bother to take your prostate out either?

I would have thought if he’s continuing with the removal of your prostate he might aswell take the SV’s on the off chance that he did get it all? If he doesn’t then I guess you’re in the same position as if he left them? Fingers crossed it will all go to plan anyway and not too much there.

Best of luck for tomorrow. I remember my stomach just churning over waiting to tell them. They did say they knew something wasn’t right though, just how we had been.

User

Posted 23 Jun 2022 at 06:50

Thanks for your good wishes Elaine. I can’t say I’m looking forward to this evening but I hope that they will be ok and at least we won’t have to hide everything still. They have seen a close friend get diagnosed with a tumour in her head at the age of 9 and go through years of very intense treatment, about to be 5 years clear. So they know the power of treatment.

I think that there is no point removing the prostate if he can’t get the SVs out successfully, which I think is very difficult or impossible if they are full of cancer (someone better qualified on here probably knows if that’s right). Maybe it’s better to leave it all in if you’re going to revert to RT? I don’t know. Anyway, fingers crossed.

User

Posted 23 Jun 2022 at 08:44

I think it is a semantic issue. The SVs are always removed during prostatectomy - it would be impossible to remove the prostate without them.

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

User

Posted 23 Jun 2022 at 10:49

Thanks Lyn. I think I need to find out more from the surgeon!

User

Posted 23 Jun 2022 at 12:45

The SVs start inside the prostate and extend outwards. I think what the surgeon is saying is that the scans suggest your cancer may be in the SVs outside as well as inside which means that surgical removal wouldn't get it all and you would need further RT/HT to deal with what is left behind.

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

User

Posted 23 Jun 2022 at 16:00

Thanks Lyn, that would make sense.

User

Posted 28 Jun 2022 at 11:15

My surgery is on Monday 11th July and am taking the family away for a holiday next week. so I am prepared this week, do I need to take anything into hospital or have anything in particular at home ready for when I leave?

thanks all

User

Posted 29 Jun 2022 at 14:10

Hi Nick,

Hope everything went as well as can be expected with the kids. Hope you have a great week away.

There are some great posts on here about how to prep for pre and post op, I’m not sure how to link them but maybe someone else will be able to do it.

I sent rob in with prune juice, cranberry juice and peppermint tea just to try and give him a head start. I’m sure the hospital will give you laxatives so make sure you take them religiously to hopefully help with initial constipation. Drink lots of water (around 3 litres per day) this will help the bowels but also minimise chance of infection. Rob had regular pain killers for probably the first week (often just paracetamol) whether he felt he needed them or not, so he never really felt any pain at all. Many have instilagel in case the end of the penis gets sore with the catheter. We got some but it wasn’t needed. Have some pads ready in case leakage with catheter in and maybe a sheet on the bed or I used some puppy pads (rob had no leakage with catheter in though). Make sure you are doing lots of pelvic floor exercises right up to it. It was suggested by someone on here to get Canterbury jogging bottoms that zip right up the side….useful for checking and emptying catheter. A bucket to put the catheter in a night (much easier than the stand provided)

Will let you know if I think of anything else but I’m sure others will add to it.

Good luck for the op and keep us posted with your progress 👍

User

Posted 29 Jun 2022 at 14:24

Nick ,Ask the hospital for some instilagel or hydrocaine" in case" the catheter makes the eye of the penis sore. Try and avoid constipation, keeping mobile and keeping fluid intake up should help. Snug but not tight short type underwear helps keep the catheter from moving around.

A packet of your favourite biscuits or crisps are handy if you lose your appetite or want a midnight snack. A non fizzy drink makes a change from water. Ask the hospital for some ear plugs and an eye mask, you will still be disturbed for regular obs.

Get a couple of spare thigh straps so you can shower. Shower put a dry strap on the other leg and transfer the bag to the dry strap.

Have a look at this post.

https://community.prostatecanceruk.org/posts/t24485-Going-in-for-the-Operation---any-tips#post240314

Hope all goes well.

Thanks Chris

User

Posted 29 Jun 2022 at 14:34

For hospital suggest ear buds or headphones. I found it useful to play random sleep music to take my mind off any post op pain and block out the usual hospital noises when trying to sleep. Also M&S have comfy cotton pyjama shorts which I found handy with the catheter.

Afterwards +1 for Canterbury track suit bottoms with the full length zip plus instilagel which I found I needed in the second week. Also my hospital gave me spare velco attachments for the catheter tube. You've got to be extra careful not to yank this after the op.

BTW am now 8 weeks post op and almost fully continent. Just 1-2 light pads a day and none at night. I found it improved frustratingly slowly for the first 6 weeks and then more quickly for the last 2.

Good luck with the op 👍

User

Posted 29 Jun 2022 at 22:11

Thanks very much everyone, as always it’s useful stuff. I’ll try to channel my inner scout and be prepared!

Nick

User

Posted 29 Jun 2022 at 22:28

Pants rather than boxer shorts - preferably one size larger than you usually wear. You have a vasectomy as part of the operation so scrotum may be quite swollen afterwards and pants provide a bit of support.

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

User

Posted 29 Jun 2022 at 23:35

Thanks Lyn. I’ve already been the lucky recipient of not one but two vasectomies. So much fun I went back for another.

That’s one less thing to worry about.

User

Posted 30 Jun 2022 at 00:26

It doesn't matter if you have had one before - they still cut the tubes again to remove the prostate so the after effects could be very similar to those you have had before. John had a vasectomy 20 years before his RP but his scrotum post-RP was a sight to behold!

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

User

Posted 30 Jun 2022 at 06:32

Every time I think I know something about this it becomes apparent I know nothing. Thanks Lyn and everybody else again for your knowledge and support.

User

Posted 13 Jul 2022 at 14:12

Thanks Bill. They know now and are fine, we think.

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