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User

Posted 03 Feb 2022 at 14:23

Thanks Elaine for your kind words.

It is good that Rob is also doing well and, as you say, it is even better that he is beating your expectations. It just goes to show that there is usually light at the end of the tunnel and taking quick affirmative action is often the best way forward. Something that I and you/Rob have done. Give him my regards.

Ivan

User

Posted 03 Feb 2022 at 23:07

Great news on the histology Ivan. Very pleased for you

User

Posted 15 Feb 2022 at 10:26

Since a milestone has been reached I thought I would post an update on my narrative.

Seven weeks after surgery and just under 6 weeks after my catheter was removed, I have, for the last 3 days, been 100% continent. For reference purposes, I was totally incontinent for 6 hours after the removal of my catheter, was then 75/80% continent for a few weeks after that and then gradually gained more continence. Early last week I was around 95% continent and then, all of a sudden, had no leakage at all- even when coughing! So, a result.

ED wise, I am having orgasm's and get semi-hard but, according to the specialist nurse assigned to me, at this stage of my recovery I will have to up my Tadalafil from 5 mg to 20 mg a day to return to as it was before surgery.

Ivan

User

Posted 15 Feb 2022 at 11:43

Ivan. If I were you I would check again on that Tadalafil dosage. My understanding is that 5mg is a daily dose. You could take 20mg for an Event Dose but then I am pretty sure that you should then lay off it for 3 days afterwards.

Personally I take 5mg before sleep (to minimise any poss side effects) and then I supplement with 50mg Sidenafil (Viagra) for Events.

User

Posted 15 Feb 2022 at 11:48

20mg a day Tadalafil would also require 4 packs a month as a perscription. Highly unlikely to be signed off by the NHS and comparatively pricey if you are paying yourself. You would also be increasing your personal risk to any side effects.

User

Posted 15 Feb 2022 at 12:22

Thanks for your message, ProSixty

Yes, you are correct and for an "event" I would need to take 20mg and then not take anymore for a few days afterwards. Because I don't like taking medicines unless I really have to, I took 5 mg a day for 14 days after my catheter was removed and then stopped taking it. The consultant who phoned me a couple of weeks after I stopped to discuss the findings of my sliced and diced prostate mentioned that I should take Tadalafil for a minimum of 2 months after surgery to aid nerve recovery and to improve blood flow. So, I started taking it again. The consultant also mentioned that I should keep my member in working order to assist the aforementioned blood flow.

I may well return to "normal" with regard to erections as all the nerve bundles on the left hand side were spared and 80% on the right.

Ivan

User

Posted 15 Feb 2022 at 12:30

Great news Ivan, really hope it continues that way for you. Rob has been pretty good since catheter removal but we had a few social events over the weekend so drank moderately 3 consecutive days….day 4 he had a leak. I think caffeine and alcohol will definitely need to be monitored but not always easy!

Take care

Elaine

User

Posted 15 Feb 2022 at 12:46

Thanks, Elaine, for your message.

Yes, it does appear from reading the other messages on here that alcohol and caffeine does induce leakage issues if over done. Fortunately, I don't drink alcohol or drink coffee!

I am pleased to hear that Rob is progressing nicely; long may that continue.

Ivan

User

Posted 06 Apr 2022 at 12:01

Post surgery update

I had a high sensitivity (Complexed) PSA blood test on 05/03/22 and was scheduled to discuss the findings with Addenbrookes on 15/03. The meeting was subsequently cancelled and as a result my PSA test results were not released to my record on "My Chart" at Addenbrookes. I contacted the hospital yesterday and a new consultation was arranged for 01/06. They agreed to release my 05/03 PSA results and advised that I would need to undergo another PSA test before that 01/06 consultation. My 05/03 PSA results are:

Less than 0.04 ug/L

So, looking good and, hopefully, the next PSA results are the same.

Ivan

User

Posted 06 Apr 2022 at 23:47

Fabulous Ivan! Long May it continue. X

User

Posted 07 Apr 2022 at 17:55

Great news Ivan, really happy for you 👍🏽 X

User

Posted 01 Jun 2022 at 11:01

An update following my 01/06 consultation with the Addenbrookes Clinical Nurse Specialist.

Items discussed:

PSA results (04/03/22 & 18/05/2) of less than 0.04 (lowest Addenbrookes test to) are excellent

My full-on urine flow (as good as it was when I was a teenager) suggests that there are no urinary issues following my surgery

Tadalafil 5 mg tablets: It was suggested that I continue to take at least 5 mg a week ( I stopped taking them after a couple of months as I don't like taking pills) to ensure that blood flow to the penis is not restricted. It was also suggested that, additionally, I have sex or masturbate (or use a pump) at least once a week to ensure that the blood vessels (which reduce in size as they get to the end of the penis) do not whither away/harden up. This can cause problems as the years go by.

Pelvic floor exercises: I stopped doing these a couple of months after surgery as apart from leaking when I lifted really heavy items I was bone dry. It was suggested that I restart them and do them once a day.

ED: Not an issue as though I don't get as hard as I did pre-surgery I get hard enough for penetration.

Next consultation to be scheduled for early September (PSA test to be undertaken 10 days before)

Ivan

Edited by member 01 Jun 2022 at 11:07 | Reason: Not specified

User

Posted 27 Sep 2022 at 10:14

I was not going to update my conversation page just my profile but thought it might be useful for those that have and are being treated at Addenbrookes if I commented on my latest PSA test result. I had the test yesterday ( at the drive through on Newmarket Road) and, as usual, got the result sent to me within a few hours of the aforementioned test. My previous 2 quarterly tests were complexed PSA tested and came out at less than 0.04 ug/L. The latest test records a Total PSA figure of less than 0.10 ug/L and was sent with the following comment:

" Complexed PSA no longer available-total PSA results will not be reported below 0.1 ug/L. Normal range 0.00-2.99 ug/L."

I have a telephone meeting with the consultant scheduled for 05/10 and will ask him then why the testing criteria has changed. I assume it is because my surgery was nearly 10 months ago and that because the last 2 quarterly tests were less than 0.04 ug/L it is now deemed not necessary to test below 0.10 ug/L.

So, Addenbrooke Prostate cancer patients, read the comments sent with your PSA results in case your reading is higher than you expected.

Ivan

User

Posted 27 Sep 2022 at 13:19

I suspect that Addenbrookes have taken on board the BAUS finding that usPSA is unreliable and leads to unnecessary anxiety and salvage treatment

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

User

Posted 27 Sep 2022 at 13:33

Indeed, that may well be the case. In the past Addenbrookes only tested to 0.04 mg/L on the basis that there was no point testing any lower as even without a prostate and no cancer the test could still record low levels of PSA.

It will be interesting to see whether the consultant at my phone consultation on 05/10 confirms that they have been swayed by the BAUS findings.

Ivan

User

Posted 27 Sep 2022 at 13:37

Will be interesting to see what they say..

User

Posted 27 Sep 2022 at 23:31

It is interesting to see how quickly things change. When John was first changed from usPSA to 1dp testing, I was horrified! Argued a bit, didn't get anywhere ... and then it just became our new normal.

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

User

Posted 22 Nov 2023 at 09:44

As a couple of people have recently asked why I have stopped posting on this narrative, I would advise that the updates for my PSA testing are recorded on my profile and that I will only use this narrative if I need to impart more detailed information.

Ivan

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