Waiting for prostectomy

User

Posted 20 Feb 2021 at 15:27

Hi Bob - keeping well thanks, hope you are, too. That'll probably be the tamoxifen - it's not unlicensed as such (been around for ages) but using it to counter gynaecomastia resulting from bicalutamide use is considered "off label". It is a breast cancer treatment after all. My first prescription was private (28 days of both drugs was about £17) but since our guy wrote to my GP with his recommendation my GP surgery has picked up the repeat without question and I picked up more today. Don't forget to apply for an NHS Medical Exemption to get your NHS prescriptions free of charge - you have cancer, therefore you qualify.

Speaking of "our guy" I got a letter this morning acknowledging my choice to go with RARP but he gave absolutely no indication of how long the wait would be. I did tell him he can forget about May - I'm not spending my 20th wedding anniversary with a catheter in place or with dodgy continence issues.

Much later than early June and I'll pull the plug on it and see if I can go private in our "second city" which is about an hour or so away on the A42/M42 - I checked and they are still operating. They told me an appointment can be made with about 4 days notice after which (if appropriate) it's about 4 weeks until surgery.

All the best

Ian

User

Posted 20 Feb 2021 at 15:46

Thanks Ian it's just the waiting I'm not dealing with very well that's why I'm going onto the hormone tablets untill surgery, I'm sure we'll get sorted when we get back to something like normal🙏

Take care

Bob

User

Posted 22 Feb 2021 at 13:28

Hello bob

My story

Diagnosed Oct 19, 64 yrs old, psa 6.1 Gleeson 7. I was fit healthy and positive.

Decided for robotic surgery, never been in hospital, or had operation ,anaesthetic before.

Had to wait till July 20 for surgery due to covid.

Surgery went well, catheter out after 10 days,medium incontinence to start with. Walking 3km after 3 days,running 3km after 6 weeks. Back to work late oct 20.

Hardly need a pad these days. Fit healthy, running,cycling etc.

If you decide on surgery, practice your pelvic floor exercises, and do them regularly, they really do help,and I continue post surgery. Get yourself physically fit. You dont need to run a marathon but make sure your positive in mindset and your body is ready. Again I found this really worked and it was valuable for me while waiting. It gave me a purpose and focus.

Stay safe

User

Posted 22 Feb 2021 at 14:54

Tamoxifen is a completely standard drug to prescribe to men on HT. I'm sure its manufacturers would be surprised to learn that it's "unlicensed". Are you sure that that's the drug being referred to?

Best wishes,

Chris

User

Posted 22 Feb 2021 at 15:14

Hi Chris

Yes it's tamoxifen should have been on it 2 weeks ago but my local surgery have to have a meeting before they can prescribe it to me not happy 8 don't know what the problem is

Bob

User

Posted 22 Feb 2021 at 15:18

Hi sammo

Glad surgery went well and your on the mend while waiting did you go on HT bicalutmide and tomoxifen Mate take care

Bob

User

Posted 22 Feb 2021 at 15:22

Hi there. No I have had no medication at all. Pre or post surgery

User

Posted 22 Feb 2021 at 15:30

Bob

Ok mate thanks be nice to keep in touch, how your getting on

Cheers Bob

User

Posted 22 Feb 2021 at 15:37

Just a thought. Have you spoken to the helpline nurses? They are really helpful and knowledgeable. One thing which I forgot to say was that in the early stages of waiting I managed to speak to a member of public, verbally, about his situation, diagnosis etc and his story. I spent 45 minutes one Friday evening talking to a total stranger,but he gave me so much confidence going forward.

The nurses might be able to offer same to you if you are interested. I cant guarantee to know everything but if you want a chat sometime, let me know

Regards

User

Posted 22 Feb 2021 at 15:49

Cheers mate that's good to know much appreciated at the moment I've been on waiting list just over 3 months surgeon told me 3 - 6 because of covid it's just the waiting sammo that gets to me just want it done and dusted I know there's lots of men in same position probably saying same thing trying to be positive tho

Bob

User

Posted 22 Feb 2021 at 16:16

I saw my consultant last year on 8 March and at that time I asked him how long I could wait, 4 -6 weeks he said.

Then the following week covid hit us surgery etc postponed.

That's when I took up doing my pelvic floor exercises, doing joe wicks in the mornings and I rode an exercise bike john o groats to lands end 1560km.

These things gave me a purpose and focus as I was furloughed from work to. I didn't hear anything till late june when consultant rang to " book me in". I felt great in myself but of course didnt know what was going on inside. He said not too worry as in my condition things won't have worsened too much.

It is the not knowing and the wait but make sure you talk about things and dont bottle up. For your info my surgery took around 3.5 hours. I was fine afterwards with very minimal pain and discomfort. I would recommend and do the same again.

User

Posted 22 Feb 2021 at 16:35

Thanks sammo nice to talk to someone about it it does make you feel a lot more positive this is a good online community forum it helps a lot to talk and not bottle it up like you said take care stay safe

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