New diagnosis - rabbit in headlights - - Page 2Localised cancer

User

Posted 15 Feb 2022 at 09:23

Morning Jayne

Good news that it appears that the Bone Scan was clear.

My lesion was 15 mm in length and 8mm across and the second biopsy found that the cancer was throughout my prostate ( More cancer was found when my prostate was removed and cut up). The surgeon originally told me that only my left nerve bundle would be sparred but after surgery the surgeon told me that as well as all the left hand side being spared 80% of the right hand side was too. My continence (7 weeks after surgery and 6 weeks after the removal of the catheter) has, for the last 3 days, been 100% . So, something of a milestone reached and passed in my book.

Ivan

User

Posted 16 Feb 2022 at 15:51

RALP booked for 22nd March. Decision made. 5 weeks seems a long time but Im sure it will fly by. Will keep you all updated and once again, thank you for the support. I will continue to use this thread as I am sure I will have lots of questions post-op. Jayne

User

Posted 16 Feb 2022 at 16:21

good luck I am sure he will be fine 5 week's will be over in no time I went the rt/ht route and all is good at the moment PSA now 0.01 from 24.9 both treatments seem to have similar success rates 👍

User

Posted 16 Feb 2022 at 16:31

Once the decision is made, Jayne, then it is easier to focus on the end result. My surgery was around 5 weeks after I made the decision and the time flew by. It would aid continence post surgery if your husband started pelvic floor exercises as soon as possible and that you use the available time to start buying in what you need i.e. incontinence pants and pads, a waterproof sheet for the bed, Instillagel to relieve tip of penis pain when the catheter is in ( I have a half full box that you can have for free if that would help).

Ivan

User

Posted 16 Feb 2022 at 16:54

Thanks Gaz and wishing you well. x

User

Posted 16 Feb 2022 at 16:55

Thanks Ivan, everything crossed. I was trying to find on this site a list of things I need to purchase? Is there one do you know?

User

Posted 16 Feb 2022 at 17:25

I don't think there is a published list. I read some of the posts and went from there.

I would certainly suggest you buy:

A box of 30 Tena (or equivalent) Absorbent level 2 pads

Two or 3 packs of 10 Vivactive (or equivalent) Maxi pants

A box of Instillagel

A soft cotton waterproof sheet ( I bought mine from Dunelm)

I used a separate bed when I had the catheter in and laid on the waterproof sheet but, fortunately, because I was wearing the incontinence pants I had no leakage on the sheet at all. Although your husband will not be able to drive for at least 2 weeks after the operation I suggest, especially if you have a luxury car, that you buy a waterproof covering for the driver/passenger seat. Fortunately, I did not leak on the seat as either a passenger or as the driver but it was worth having it there just in case. Finally, it would be useful if your husband doesn't already have a pair to buy some loose fitting trackie bottoms.

Ivan

User

Posted 16 Feb 2022 at 19:24

Jayne have a look at this one.

https://community.prostatecanceruk.org/posts/t27632-some-quick-top-tips

Thanks Chris

User

Posted 16 Feb 2022 at 20:59

Thanks Ivan.

User

Posted 16 Feb 2022 at 21:00

Thanks Chris 👍

User

Posted 16 Feb 2022 at 22:21

Glad the decision is made Jayne 👍🏽 We bought everything that was recommended but actually found we didn’t need a few of them (would buy it all again though just to be prepared). We really expected the worst with rob being a bit older too (and consultant possibly expected it) but it’s been so much better than we could ever have imagined. Keep positive and hopefully we can all between us help with any advice you made need xx

User

Posted 16 Feb 2022 at 23:42

Im feeling a bit more in control now we have a plan. Everything crossed that the surgery is successful and we get the desired outcome. I did try to send you a private message but your mailbox is full? Hope Rob is progressing well and thank you for your support xx

User

Posted 13 Mar 2022 at 12:51

After having some time out, which did us the world of good and a great distraction, here we are, just over a week until surgery. The anxiety is building. The supplies are purchased. The unknown is the worst....... how will he recover, how will he cope, will they remove the cancer with clear margins, will he gain his continence.........lots of questions. I know it’s one step at a time, but you can’t help your mind running away with you (usually at 3am). I have to say hubby has committed to all the advice, exercises etc. so we are just keeping everything crossed for a positive outcome. The 22nd March will come round soon enough I know. I still can’t believe what we are about to endure when he looks so well and healthy. Sorry for the download!

User

Posted 13 Mar 2022 at 13:07

I had no symptoms at all prior to surgery, other than a higher than it should be PSA level. So, it is somewhat surreal that you are putting yourself through major surgery, with all the possible side effects, when outwardly nothing appears to be wrong. It is quite likely that I could have gone another 10 years without realising anything was wrong but it is very likely that at that stage my condition may have been terminal.So needs must and all that.

I am glad that you are well prepared for next week and wish your husband all the best.

Ivan

User

Posted 13 Mar 2022 at 14:58

It's an understandable reaction Jayney. I kept processing similar thoughts before the op. There will be challenges ahead, there's bound to be but I'm certain you will both rise to them. I've still got a long way to go but I'm not floundering yet despite despite the odd curveball. Chris

User

Posted 13 Mar 2022 at 15:48

Originally Posted by: Online Community Member

I am glad that you are well prepared for next week and wish your husband all the best.

Ivan

Thank you Ivan, I no doubt will be back on here asking lots of questions post surgery. As you say, needs must and all that. We’re keeping everything crossed. Hope you are making a good recovery?

User

Posted 13 Mar 2022 at 15:50

Originally Posted by: Online Community Member

Thanks Chris, hope you are making good progress, despite the curveballs. The thoughts at 3am are not great, but as you say understandable. Needs must, and I’m sure there will be questions as we progress on this flight path!

User

Posted 13 Mar 2022 at 16:20

Yes, everything is fine my end: 99.99% continent (only have a slight leak when I lift something very heavy), my energy levels are back to where they were before my operation and the 7 puncture wounds, apart from one which was used to drag the prostate out kicking and screaming, can no longer be seen. The 7 or so days post surgery are the worst as you have a catheter in, are constipated (in my case it lasted 4 days) and are feeling sorry for yourself. After that, especially when I had the catheter removed, you are less like a bear with a sore head ( You will have to give your husband some slack if he appears cross and argumentative all the time).

You are in safe and professional hands at Addenbrookes and if your husbands surgery goes as well as mine it will be a walk in the park.

Ivan

User

Posted 13 Mar 2022 at 19:02

All the best User 999 for tomorrow which, if it was like mine in December, will be a walk in the park.

Ivan

User

Posted 13 Mar 2022 at 20:50

No two people are the same, but if someone is reasonably fit and healthy then the surgery isn't such a big deal, providing the patient doesn't try to be a hero afterwards. Better safe than sorry. Based on the experiences I've seen on here, most patients with Gleason 7 largely regain continence after surgery. The unknown is ED, and the second unknown is how you both cope with the result - few over 60 appear to obtain full recovery.

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