Worry about meeting the consultant on Monday

User

Posted 14 Aug 2022 at 18:12

I think there are two questions here.

1. If two different doctors were presented with exactly the same patient, would they both recommend exactly the same treatment? No, we have seen posts on here where one doctor would recommend surgery another RT and one would use 6 months HT the other 24 months and many other variations. Neither doctor is right or wrong, they just make the best guess from their own experience.

2. If one doctor was presented with two patients with identical diagnosis would they recommend the same treatment to both? Yes to start with, but then they would listen to the patients desires and change the recommendation to accommodate the patients wishes.

I'm slightly surprised that a 55 year old was offered surgery with a guarantee of positive margins, why not just go straight to RT? Maybe the patient insisted, or maybe it was part of a trial to study this approach.

Dave

User

Posted 14 Aug 2022 at 18:57

He was first part of a Norwegian trial that was then cancelled. That could have something to do with it. Thank you⁵h

User

Posted 14 Aug 2022 at 19:10

Question - does nerve sparing have any effect on incontinence or is that purely down to pelvic floor exercises? Reason I am asking is that OH now finished day 3 without any pads and yes, his stream is very strong ( about the same as it was over 20 years ago). Thank you

User

Posted 14 Aug 2022 at 20:31

If all nerves are removed there is a higher risk of permanent incontinence but regaining continence doesn't mean that erections will also return.

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

User

Posted 05 Sep 2022 at 17:53

Hi, quick update from phone call with urologist today . PSA below 0.04 undetectable. No nerves spared, doc mumbled something about the cancer. Told us OH will never have an erection again without using a pump. This pump works for penile health but nothing else. Asked about Gleason score and staging and was told that as the cancer is gone it does not matter. Usual "long" phone call with anybody in that department and again complete lack of information. OH well, OH is happy

User

Posted 05 Sep 2022 at 18:37

OH just told me that before I joined the conversation the urologist mentioned that he did not see any need for further PSA tests. Surely OH misunderstood?

User

Posted 05 Sep 2022 at 18:53

Well that is a very good PSA. Bad news about the erections. As you have probably seen there have been a few posts about penile implants. And how very hard it is to get one. Well I think if there is anyone on this forum who can jump through the hoops I think it is you, so if this is what your husband wants (do remember he gets a say in this) then perhaps you should start now.

The arrogance of the surgeon is unbelievable. It is quite reasonable to want to know everything about this disease (though once again, OH is the patient so his wishes are the priority). If the surgery was on the NHS he is definitely entitled to his records, if private he is probably entitled to them.

A breast cancer surgeon in the Midlands was very obstructive about patient records and this hid evidence which lead to a 15 year jail term. Google the above for more.

I don't think anything is wrong with your OH's treatment, but professionals being under constant scrutiny will help them maintain their professional standards.

Dave

User

Posted 05 Sep 2022 at 18:56

PSA tests need to be taken 3 monthly after surgery (well mine are) for the first year and then if they remain the same every 6 months for another 2 years (that is what I have been told by Addenbrookes).

Ivan

User

Posted 05 Sep 2022 at 19:48

My cousin was widowed at the age of 52 due to an arrogant surgeon who said the cancer was gone and future monitoring was not necessary.

NICE guidance on PSA monitoring:
6 - 8 weeks post-op
next one 3 months after the post op one
at least 6 monthly for the first 2 years (in some areas, they do 6 monthly for the first 5 years)
annual for the rest of his life.

https://cks.nice.org.uk/topics/prostate-cancer/management/management/#follow-up-monitoring

That assumes that his PSA results remain under 0.1 - if PSA is rising, tests go to 3 monthly until it is determined that it is a biochemical recurrence

Is it possible that the surgeon just meant that he won't be having any more PSA tests through the hospital and needs to arrange them with his GP? That would be common practice.

Most men are capable of penetrative sex with a vacuum pump - if they struggle, it is usually down to technique. And having no nerve bundles doesn't mean that injections will not work. Sounds like post-op erectile function is not the urologist's area of strength.

Edited by member 05 Sep 2022 at 19:54 | Reason: to activate hyperlink

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

User

Posted 05 Sep 2022 at 20:12

DW, do you get copies of letters sent from the hospital to your GP. They may give you a bit more information than you are getting.

Our urology nurses / department now provide a care plan to the patient's GP with trigger values and expected follow up from the GP.

On the subject of erections I was supposedly non nerve sparring and although I will never fully recover I do still get the odd surprise.

Thanks Chris

Edited by member 05 Sep 2022 at 20:15 | Reason: Not specified

User

Posted 05 Sep 2022 at 20:26

We got letters from the oncologists (both ours and the Brachy) but apart from the appointment letters nothing from the urologist. When I asked I got told there were tech reasons

User

Posted 05 Sep 2022 at 20:48

DW , that doesn't sound great, how would anyone looking into your case know what is going on. Not sure where you were treated but I did go to a support group meeting in your county which was run by the urology nurses. If still active there may be a meeting in a couple of days.

Thanks Chris

User

Posted 08 Sep 2022 at 06:19

Do I need to worry? OH had telephone conversation on Monday with urologist, now got an e-mail booking one for mid October.

User

Posted 10 Sep 2022 at 02:23

From what you reported of the Monday meeting it sounded a bit of a shambles. With the surgeon unable to answer your questions. I'm wondering if the surgeon even had your his notes. So I'm hoping the meeting in October will just be the post op review meeting but this time conducted properly and giving you the information you would like.

I would consider making a list of your questions and emailing them back to the surgeon, saying you expect answers to them at the October meeting.

Dave

User

Posted 12 Sep 2022 at 17:58

I have done some research and it the timing of the October meeting fits with a possibility of adjuvant RT as according to the Lancet it should start within 6 month if patient is not incontinent but it only recommends RT if positive margins or T3 or Gleason 8 or higher.

After confirming that no nerves were spared urologist asked OH if he is having erections. Did he mean natural unassisted, with the aid of the pump or Tadalafil?

User

Posted 12 Sep 2022 at 18:49

I think you're reading a bit too much into the timing of the meeting. It is more likely to be that the surgeon will have just got back from his holidays than adjuvant RT has been planned and nobody told you.

I don't know why the surgeon asked about erections. I guess they have a check list and just need to confirm everything.

Dave

User

Posted 12 Sep 2022 at 20:42

DW, I am sure you would have already been told if he was having adjunctive RT.

My post op PSA was 0.03, my Gleason was 4+3, I had positive margins and extraprostatic extension. It took 3 years for my PSA to reach 0.2 and at 0.27 I started salvage RT without HT.

I realize you don't seem to have had the best exchange of information, but as already said don't read too much into what little information you are given. Stay positive 👍.

Thanks Chris

User

Posted 25 Sep 2022 at 10:33

Hi, saw the ED nurse last week. She recommended Caverjet. First trial with 5ml was a good start, 2nd attempt 2 days later with 7.5 ml not so good. 10 ml trial next week.

Been told that we can go as far as 40ml. Any advice gratefully received.

User

Posted 25 Sep 2022 at 12:05

No advice but I love that you have changed your name 😂👍

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

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