TWO year surgery-versary today

User

Posted 28 Sep 2020 at 17:36

Lexi

I was put on daily 100mg of sildenafil, apart from the blue tint to my vision no side effects.

Thanks Chris

User

Posted 28 Sep 2020 at 21:38

Originally Posted by: Online Community Member

Husband is 9wks post op and has received his sildenafil prescription. Advised to take 100mg three times a week.....is this fairly standard? Some of the information I have read recommended half that dose?

Thanks.

Hi, Husband is 11 weeks post op. He’s on Tidalafil 5mg daily and just prescribed 100mg Sildenafil twice a week with an initial test dose of 50mg.

Mel

User

Posted 28 Sep 2020 at 23:41

There is no evidence that sildenafil helps with nerve repair / penile health post op in the way that tadalifil does but if he is hoping for an erection and is feeling randy, taking a sildenafil three times a week isn't going to do him harm - the maximum dose allowed by NICE guidelines is 100mg per day. Not many GPs would agree to prescribe that much though and in many parts of the country, 4 x 100mg per month is the maximum you can get on the NHS - general view is that men are allowed to have sex once a week :-(

Edited by member 28 Sep 2020 at 23:42 | Reason: Not specified

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

User

Posted 29 Sep 2020 at 19:55

I happened to come across a patient who had his RALP just a few weeks before my husband under the same surgeon. I learnt that he had gone privately but had his surgery at the same NHS hospital and that he was discharged home on Cialis. Perhaps we should ask Gp if he can change from Sildenafil once tablets are finished.

User

Posted 13 Oct 2020 at 20:08

Husband is now 11wks post surgery and doing well. No incontinence issues. Tomorrow we meet oncologist. I have been expecting a letter telling us the face to face appointment has been replaced by a phone call but it’s still on and following a phone call to the secretary I am relieved that I am able to attend also.

User

Posted 13 Oct 2020 at 21:59

Lexi

Did you see this the other week, the way the article is written was a little bit confusing at first.No doubt you can find research that says the complete opposite.

https://community.prostatecanceruk.org/posts/t26716-Adjuvant-V-Salvage

I assume oh may be heading for some form of RT.

Thanks Chris

User

Posted 13 Oct 2020 at 22:25

Hi Chris

Yes I did see that, thanks. I didn’t really understand it but then read Lyn’s post.

Will update tomorrow.

Thanks, keep well.

User

Posted 14 Oct 2020 at 10:44

Arrived to see oncologist only to be told I wasn't allowed in and that he would speak to his secretary for telling me otherwise. He agreed to speak to me separately at end of husband's consultation.

He recommends 33 sessions of RT to prostate bed but sees no benefit in commencing HT at present. He estimates it will commence in next 4-6wks.

Edit....just had call to say planning scan is next week and that enemas/instructions being posted out.

Do you have to use enemas daily before radiotherapy?

Best wishes to you all.

Edited by member 14 Oct 2020 at 14:09 | Reason: Not specified

User

Posted 14 Oct 2020 at 17:48

Lexi

Not an unexpected treatment but still disappointing.

I had a daily enema, but not all hospitals do. I got into a routine of using the enema at home a couple of hours before the RT. The main thing is consistency, so that the bladder and bowel are in the same position / state every treatment day.

It will get to be tedious but he should sail through the treatment.

Thanks Chris

Edited by member 14 Oct 2020 at 22:22 | Reason: Not specified

User

Posted 14 Oct 2020 at 19:11

Ok Chris, thanks. For the planning stage he's to have an enema night before and morning of.

User

Posted 15 Oct 2020 at 18:09

I am due to start RT first week of November. I had gold markers implanted last Friday and planning scan is next Friday. I have been given box of enemas to use .
Use 1 the night before planning scan and 1 morning of scan. I have been told to use an enema in the morning prior to each of the first 7 sessions

User

Posted 15 Oct 2020 at 22:09

Hi CBR

Hope it goes well for you. Is this first line treatment for you?

User

Posted 16 Oct 2020 at 13:00

Hi Lexi

Thanks

Yes, it will be up to now it’s been HT

Mark

User

Posted 16 Oct 2020 at 18:37

Received appointments and enemas in post today. Planning scan is next week and RT commences 2 Nov.

Good luck Mark 🤞🏼🙏🏼

User

Posted 16 Oct 2020 at 20:34

I was given a box of micro enemas for my RT but only needed to use them for the first week. After that the RT had changed my bowel movements sufficiently that the lower bowel always was empty anyway, so they became unnecessary. No big deal either way - you quickly get used to using them.

I do have a couple of suggestions about RT:

1. Towards the end of treatment (and for several weeks afterwards), the radiation irritated my bladder and I found myself having to pee every 45m all night long. Absolutely shattered through lack of sleep, but the biggest help was buying a 1litre plastic urine bottle (Amazon 😁) so I didn't have to get out of bed to pee. Reduced the exhaustion enormously.

2. Again because of radiation irritating the bladder I got a sharp pain when peeing. Very common, apparently. Cranberry juice solved the problem for me in a couple of days. Magic! Nothing fancy, just the ordinary stuff from Sainsbury's.

Hope the treatment goes well,

Chris

User

Posted 16 Oct 2020 at 20:58

Great tips Chris, thanks 👍🏼 Will google the urinal just now.

User

Posted 17 Oct 2020 at 12:13

Thanks- and good luck to your other half

User

Posted 20 Oct 2020 at 06:22

12wks post op, feeling well, continence regained and first short cycle thoroughly enjoyed 🚴🏼
Today is the planning scan in preparation for RT commencing 2 Nov.

Microlette enema last night and this morning and then it’s one enema on the day of RT for first 7 days only.

🌹

User

Posted 23 Oct 2020 at 20:02

Those that have had RT could you identify your skin markings? I can’t for the life of me find three dots on my husband !! I am unsure if one is a freckle or not.

User

Posted 23 Oct 2020 at 20:09

About 1" above the penis (which meant rooting around in the pubes to find it each time) and the same height on either hip.

Oh, and they're blue dots in my case, so not same colour as a freckle.

Edited by member 23 Oct 2020 at 20:10 | Reason: Not specified

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