New diagnosis - rabbit in headlights - - Page 5Localised cancer

User

Posted 17 Apr 2022 at 22:46

Glad to hear the operation went well. Been away on holiday to Portugal otherwise I would have posted earlier. Anyway, I hope your other half’s rehabilitation also goes smooth;y.

Regards Marvin

User

Posted 18 Apr 2022 at 22:56

Thank you, so far so good. Great to hear you managed to get away too. Have you decided which route to go? X

User

Posted 25 Apr 2022 at 20:14

5 weeks tomorrow since surgery. Recovery going well. Healing nicely. Wound where they removed the prostate has not completely healed. The top 0.5mm still has to close. He’s still quite swollen which I assume is internal bruising etc. He’s Still feeling quite tired and just trying to figure out what he can and can’t do. He has been despondent regarding his energy levels, so had to remind him (again) it’s early days!!! Afternoon siestas are a must. Still taking it easy (no golf yet). We managed a few days away which was great and a change of scenery with lovely weather. Taladafill re-started last Tuesday on half dose with no side effects so far. Continence is good, just the odd dribble especially later in the evening when muscles are tired or after a glass of red wine 🍷 however, the last 2 days he’s been completely dry. He was 95% continent when catheter removed. However, no really long walks yet so this may well regress. He is religiously doing the exercises via the app. Anxiety is starting to build over test results next week (5th May). What will be, will be but we are desperately hoping for good news. 🤞wishing you all well x

User

Posted 25 Apr 2022 at 21:40

Hi JaneyP, I am glad your OH is making good progress. I am sure he will soon regain energy and fitness.
Your post prompted me to update on my own journey and like you I am beginning to think about the pathology outcomes.
All the best for the 5th, I will be thinking of you both.

regards, GG

User

Posted 26 Apr 2022 at 08:44

It took me around 8 weeks to regain my pre-surgery energy levels and before I did I was going to bed quite early (9 pm). Before the surgery I was something of a night hawk, going to bed around midnight or later. Re the wounds, 4 months on the only visible wound remaining is the long slit above my belly button which was used to remove my prostate. That wound is getting lighter and lighter in colour as the weeks go by and will, hopefully, be much less visible ( not that I intend to sunbathe topless) as the months progress. Re having a swollen stomach, mine was like that for at least 2 months but is now back to how it once was.

All the best for your post-operative test results next week.

Ivan

User

Posted 26 Apr 2022 at 23:25

Originally Posted by: Online Community Member

regards, GG

thank you GG. Just replied To your post. X

User

Posted 26 Apr 2022 at 23:27

Originally Posted by: Online Community Member

All the best for your post-operative test results next week.

Ivan

thanks Ivan, it’s always good to know these things and compare notes, he has a way to go then in terms of swelling etc. Today he walked over 3 miles which was the furthest so he’s pleased with himself. Will keep you updated x

User

Posted 27 Apr 2022 at 15:07

Hi Jayney,
Pleased your OH is doing so well. Took me more than 5 months to achieve his level of continence, but I did have a bladder neck reconstruction. Just a note to say that, at my 6 week consultation, I proudly told my surgeon that I was walking a total of about 3 miles each day. and received a ticking off with a warning that it was too much at such an early stage and to build up gradually. He reminded me about the major surgery and that the visible external wounds healed much faster than the internal wounds.
It may be horses for courses so, just a note.
Peter

User

Posted 28 Apr 2022 at 22:03

Originally Posted by: Online Community Member

thank you for your advice. Yes I was a bit concerned when he said he had walked so far. He generally does around an hour a day sometimes less, but because he felt good and was walking around the golf course he went further. He still has to have the afternoon naps which is a sure sign the body is still healing. As you say it should be a gradual build up. So far so good, just waiting on the results now. Wishing you well x

User

Posted 04 May 2022 at 21:22

Hi JayneyP,

wishing you and your OH all the best for tomorrow - it’s an important milestone and I can envisage the emotions you are feeling. I am hoping and praying that you receive good news from post op pathology.

best wishes, GG

User

Posted 04 May 2022 at 21:31

good luck for tomorrow all the best gaz 👍

User

Posted 04 May 2022 at 21:44

Originally Posted by: Online Community Member

Hi JayneyP,

best wishes, GG

thank you GG, the anxiety is unreal. I’m bring as positive as I can be and hope we get some sleep. 🤞

User

Posted 04 May 2022 at 21:45

Originally Posted by: Online Community Member

good luck for tomorrow all the best gaz 👍

thanks gaz, and thanks for thinking of us. Just trying to be as positive as I can be. 🤞

User

Posted 05 May 2022 at 13:09

Results are in and it’s good news!
Clear margins
No node involvement
Gleason remained at 7 and grade remains too.
PSA was 0.04 and next test will be 3 months time.

The left hand tumour was pressing against the outer edge and whilst it hadn’t broken through, within the year it would have been a very different story.
Honestly the relief. Thank you all for all your help and support. I’m so glad I plucked up the courage to post on the forum. Wishing you all well x

User

Posted 08 May 2022 at 14:54

Jayne P

Sorry for delay in replying. Not very good with this forum. Anyway, I have decided to go down the Hormone Therapy route and radiotherapy. I have been on hormone therapy since the end of February and my bloods are being taken 0n 26 May 2022 so hopefully PSA down to acceptable level if so onto radiotherapy. The specialist nurse has confirmed that will be 20 doses hopefully starting early July Monday to Friday for 4 weeks.

I hope your husband has recovered well which I will no doubt read about in your thread further down.

‘Anyway, both of you take care and speak soon.

Regards Marvin

User

Posted 08 May 2022 at 15:09

Great to hear your news. Should have read down the other posts before my last post. Onwards and upwards for you both!!

Regards Marvin

User

Posted 10 May 2022 at 13:52

Originally Posted by: Online Community Member

Jayne P

I hope your husband has recovered well which I will no doubt read about in your thread further down.

‘Anyway, both of you take care and speak soon.

Regards Marvin

Hope the PSA is coming down nicely when you have your test on 26th and you’re not having any major issues with the ht treatment and subsequent rt. wishing you well and please keep us updated x

User

Posted 14 Jun 2022 at 21:44

*12 week update *

OH is 12 weeks post op today. Not sure where the time has gone. The brain is great at blocking out the not so good stuff! Continence is good 👍 which is a huge relief. He uses a thin guard to catch any dribbles when he’s playing golf but more a confidence thing. Zero erections, not even a tingle in the underpant region 😞 He’s taking 2.5mg taladafill daily which I don’t believe is beneficial as it’s such a low dose. He couldn’t tolerate 5mg. Will discuss this at next appt. Waiting on penile pump (although he really isn’t interested). Still quite a bit of swelling that has to go down around his abdomen despite being 3 months post op. Wound still not fully closed - 0.5cm at top. still dressing that every other day, despite 2x course of antibox 😬 I’m keeping a close eye on it. Second PSA beginning of August and the anxiety is just starting to eat away at me. I keep pushing it to back of my mind. I can’t change the results but doesn’t stop me worrying!

Can’t quite believe we are where we are. It’s an ordeal that’s for sure. Onwards and upwards 🤞

User

Posted 14 Jun 2022 at 22:45

12 weeks, wow that seems to have flown by….although maybe not for you 🤦🏻‍♀️

He’s doing so well, just hope that wound heals fully very soon.

I’d say don’t let the PSA anxiety get to you too much, but ours is august aswell and I’m already starting to feel it a bit too 🤦🏻‍♀️ I sometimes wonder whether that feeling will ever go away. I’m sure everything will be fine though 🤞🏼

Hopefully he will have some success using the pump aswell. It’s just a rehabilitation tool for us at the moment….when he can be bothered 🙄😂

Onwards and upwards as you say, I’m sure it will just keep getting better from here.

User

Posted 14 Jun 2022 at 23:37

The 2.5mg will be doing its work in the background, helping the nerve bundles to repair themselves. You wouldn't expect that dose to provide erections - that isn't the purpose of it.

With a swollen tummy, a wound that hasn't quite healed and two lots of antibiotics, he probably isn't feeling very sexy?

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

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