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Start of a nervous journey

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User
Posted 07 Nov 2017 at 18:02
Hi

New to this!

I've recently been diagnosed and the biopsy consultant has recommended surgery. I'm due to meet the consultant who will carry out the operation this week.

I'm sure there are lots of things I should ask him, but I'm struggling to think - I just want it done.

I confess I am dreading the catheter and side effects.

Is there anything I should not forget to ask?

User
Posted 07 Nov 2017 at 19:15

Hello Devongolfer and welcome

I hope somebody with the experience you need will be along soon

We can't control the winds - but we can adjust our sails
User
Posted 07 Nov 2017 at 19:27

Probably wise to ask why they are recommending surgery - it may be something about your specific diagnosis that makes radiotherapy or brachytherapy unsuitable. If it is simply that the surgeon is recommending his or her own specialism, you could ask for a referral to an oncologist before making a final decision.

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

User
Posted 07 Nov 2017 at 19:29

You should also ask for your full diagnosis - Gleason grade, T score, which type of prostate cancer it is (adenocarcinoma is the most common but there are at least 26 others), and what % chance there is of you needing salvage or adjuvant treatment after the op.

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

User
Posted 07 Nov 2017 at 20:15

As Lyn says it might be urgent , but in most cases some people have to wait two months for surgery with no extra harm done essentially. Phone one of the nurses tomorrow on the free number as they are AMAZING and will discuss options and send info either electronically or on paper. I was 48 at surgery and it’s a big life changer whether cured or not I’m afraid. All treatments have undesirable side effects but normally you have choices. Good luck anyway !

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User
Posted 07 Nov 2017 at 19:15

Hello Devongolfer and welcome

I hope somebody with the experience you need will be along soon

We can't control the winds - but we can adjust our sails
User
Posted 07 Nov 2017 at 19:27

Probably wise to ask why they are recommending surgery - it may be something about your specific diagnosis that makes radiotherapy or brachytherapy unsuitable. If it is simply that the surgeon is recommending his or her own specialism, you could ask for a referral to an oncologist before making a final decision.

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

User
Posted 07 Nov 2017 at 19:29

You should also ask for your full diagnosis - Gleason grade, T score, which type of prostate cancer it is (adenocarcinoma is the most common but there are at least 26 others), and what % chance there is of you needing salvage or adjuvant treatment after the op.

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

User
Posted 07 Nov 2017 at 20:15

As Lyn says it might be urgent , but in most cases some people have to wait two months for surgery with no extra harm done essentially. Phone one of the nurses tomorrow on the free number as they are AMAZING and will discuss options and send info either electronically or on paper. I was 48 at surgery and it’s a big life changer whether cured or not I’m afraid. All treatments have undesirable side effects but normally you have choices. Good luck anyway !

User
Posted 09 Nov 2017 at 00:36

If you go for surgery ask for nerve sparing and don't take no for an answer. . . . . . . I understand and accept that it is not always possible but I often wonder whether it just might be difficult and difficult is not a good reason not to try.

User
Posted 09 Nov 2017 at 01:33

Nomad, I don't think we have had any men on this forum who were told they needed non-nerve sparing when they didn't. If a surgeon says 'I can't save your nerves' and a man insists anyway, then either the surgeon will advise his patient to find another doctor or potentially the patient finds that the op is not successful and further treatment would be needed.

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

User
Posted 09 Nov 2017 at 08:26

Also be aware surgeons do seem to be quick to recommend surgery.. a recent report in the Netherlands concludes diagnosis should be communicated by an 'independent specialist' with all forms of treatment availability discussed with full disclosure of all potential side effects.

You may have no other options of course, but there are a number of informative threads on here from men recommended surgery but happy they went with brachy for example.

So understanding the full range of options and especially understanding removal of the prostate is not a guaranteed cure and will have life impacting side effects

PCa is not a straightforward treatment path for many .., some however have no options .. but I agree with all Lynn has said re questions to ask.

Good luck

Clare

User
Posted 09 Nov 2017 at 11:19

Sorry Normad, I disagree with your advice when it comes to nerve sparing "not to take no for an answer". You are offering medical advice that you are not qualified to make and contrary to what a patient's surgeon may consider is necessary for the operation to be successful. The whole operation is a difficult one and nerve sparing is not just omitted due to it being difficult. To leave behind what the surgeon considers could possibly be cancerous nerves could be considered irresponsible. The final decision is best left to the surgeon when he assesses the situation during the operation.

Barry
User
Posted 09 Nov 2017 at 19:03
Hi Barry I would agree but Tony's surgeon wants a decision on nerve sparing before the operation.

We looked at the Memorial Sloane Kettering nomogram at the appointment and Tony looks to have about a 50% chance of the cancer being totally contained within the prostate. As surgeons are only human like us they cannot see microscopic cancer cells which may be on/in the nerves or elsewhere so although it is probably technically possible ( large 60cc prostate which makes it more difficult) it makes sense to us to sacrifice the nerves in the hope of reducing the risk in that the surgeon can take a wider margin around the prostate.

User
Posted 10 Nov 2017 at 04:18

It would be interesting to learn whether other members surgeons have asked for instructions on this. I was under the impression that If this aspect is raised, the surgeons usually say they will preserve as much of the nerve bundles as they feel they can without erring on the side of leaving any cancer behind. sometimes during the operation it is found that the cancer is more extensive than previously thought to the extent that it may have gone beyond the prostate and where surgery can go. Scans and biopsy do not always show this. Let's hope your husband is more fortunate in this respect and also with the preserving of his nerve bundles.

Barry
 
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