Waiting for prostectomy

User

Posted 01 Feb 2021 at 17:49

Hi I'm new to group and been diagnosed with localised prostate cancer waiting prostectomy just need reassuring about it as my heads a mess since being diagnosed

User

Posted 10 Feb 2021 at 15:14

Thanks Ian hope everything goes well for you in future wouldn't mind keeping each other up to date as we are both in the same boat rake care mate

Cheers Bob

User

Posted 10 Feb 2021 at 19:22

As Bollinge said...~£20k is about the right ball park for private. This usually includes TWOC (catheter removal)one/two weeks later at location of surgery. Plus I got a call three times a week from the urologist specialist nurse between surgery and TWOC to check all is ok. Just be aware if you have any issues with urine retention and need clinical intervention you will need to go to your local A&E. I didn’t need as resolved my pipe blockage with the help of the lovely people on here. But it’s worth being aware of how private/public care can overlap...although it’s brilliant in my view as you get to select your surgeon of choice and have little to no delay.

Edited by member 10 Feb 2021 at 19:24 | Reason: Not specified

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

Show Most Thanked Posts

User

Posted 01 Feb 2021 at 18:30

Sorry you find yourself here.

I had a prostectomy back in March last year and really happy, so far , with my recovery. But its an anxious time I'm sure.

What's your staging and diagnosis? Are they looking at nerve sparing?

Good luck

User

Posted 01 Feb 2021 at 18:43

Hi Mike thanks for replying I've been on waiting list and told 3-6 months wait I just get paranoid at times had 2 biopsys gleason score was 3+4 and it was contained in prostate so choices were radiotherapy or prostectomy so chose prostectomy and was told they would try and save the nerves

User

Posted 02 Feb 2021 at 03:50

Hi,

You would do well to order this fully comprehensive information pack from this charity:

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Best of luck.

Cheers, John.

User

Posted 02 Feb 2021 at 06:34

The wait is probably nearly the worst part. Click on my profile as I think age and diagnosis similar. Try and stay as active and in the best shape prior to surgery-it will help. And don't forget the pelvic floor exercises

Good luck

User

Posted 02 Feb 2021 at 20:22

Thanks John I will

User

Posted 09 Feb 2021 at 14:13

Hi all just recently had phone consultation with consultant 8-2-21 regards waiting for prostectomy and been told op won't be happenning any time soon so feeling a bit anxious and was advised to have hormone tablet to keep cancer contained untill op anybody been on this drug could give me any reasurance when taking it

Thanks

User

Posted 09 Feb 2021 at 14:25

If you're on tablets rather than injections it'll be bicalutimide. This is completely standard and nothing to be concerned about. There's a whole range of possible side effects, but you won't know in advance which you'll get. With me (I was on it for 18 months) the main side effects were loss of libido and fatigue. Nothing too awful.

Best wishes,

Chris

Edited by member 09 Feb 2021 at 14:56 | Reason: Not specified

User

Posted 09 Feb 2021 at 15:19

Thanks Chris

User

Posted 09 Feb 2021 at 17:17

Hi Bob - I'm in a similar place. The da Vinci in Nottingham is under a dust sheet or something at the moment and I'm about 12 days into my 150 mg bicalutamide plus 20 mg tamoxifen. So far the worst has been a dry mouth, coffee tastes wrong and I'm a bit tired and sleepy. Concentration drifts a bit. So not too bad. No idea when my op will be though. Not sure I want to go first when the covers are off though. I'd like the surgeon to have got his eye in first.

Ian

User

Posted 09 Feb 2021 at 17:24

Hi Ian thanks for that just wondered how bad side effects would be good luck mate

User

Posted 09 Feb 2021 at 17:32

Hi Ian again you having your op done at the city in Nottingham same as me if you are how long you got to wait told me 3-6 months into 3rd month now take care

User

Posted 09 Feb 2021 at 20:59

Hi Bob

I'll message you directly later so as not to discuss hospitals and/or surgeons in public and draw the attention of the moderators...

Ian

User

Posted 09 Feb 2021 at 21:30

Originally Posted by: Online Community Member

Hi all just recently had phone consultation with consultant 8-2-21 regards waiting for prostectomy and been told op won't be happenning any time soon so feeling a bit anxious and was advised to have hormone tablet to keep cancer contained untill op anybody been on this drug could give me any reasurance when taking it

Thanks

It's "prostatectomy". Harder to say, but if you miss off the "AT", you'd be having your "prost" removed. 😀

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 10 Feb 2021 at 14:14

Hi Ian did you asked professor about going private because I was thinking of private as well just wandered if he did it persanally and how much it would cost

Edited by moderator 10 Feb 2021 at 22:44 | Reason: Not specified

User

Posted 10 Feb 2021 at 14:26

The cost is usually around twenty grand for a private operation.

Cheers, John.

User

Posted 10 Feb 2021 at 15:03

Hi Bob

As we are not meant to discuss named hospitals and surgeons in the public chat I have sent a PM.

Ian

User

Posted 10 Feb 2021 at 15:14

Thanks Ian hope everything goes well for you in future wouldn't mind keeping each other up to date as we are both in the same boat rake care mate

Cheers Bob

User

Posted 10 Feb 2021 at 19:22

Edited by member 10 Feb 2021 at 19:24 | Reason: Not specified

User

Posted 19 Feb 2021 at 18:18

Originally Posted by: Online Community Member

Ian

Hi Ian hope your keeping ok I'm suppose to be on hormone tablet now but doctors having discussion on one of the tablets I'll be taking because it's classed as an unlicensed drug still waiting or op don't know whether to ask about private take care mate

User

Posted 20 Feb 2021 at 15:27

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

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.