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What next, after surgery?

User
Posted 24 Apr 2018 at 22:18

Yes a lucky dip indeed.. despite my father in law dying of PCa he was diagnosed at 72 with advanced PCa so we had no experience of surgery just hormone therapy, radio therapy and chemo.

I do agree also the individuals receiving the message hear it differently. We sat in the car and A said ‘ so that’s it then I will need to have it taken out.. he had heard mainly the surgeons recommendation to ‘put his prostate in a bucket’. I looked at him as if we had been in a different meeting!

We were told about incontinence but he did say for most it would be just like the stress incontinence some woman experience when sneezing or coughing, he did explain the dry orgasm consequence and that the ED would need tablets but no mention at all of penile shortening or a risk of atrophy.

I definitely reacted with a ‘there will have to be no other option before I think that is a good idea!’ One of the other dads from my daughters class at school had the same G6 diagnosis from the same consultant last year and I bumped into his wife last week and she said he just wanted it taken out ASAP so booked straight in for the op.. we are all different.We chatted about the kids ( grown up now) and neither of us mentioned ED though she did tell me without prompting he had no trouble with incontinence .... I didn’t feel it appropriate to ask and certainly the chance of disclosure of atrophy or shortening must be very low so the taboo lives on .. I agree imagiining life must be difficult but talking about it when it has happened equally so.

User
Posted 25 Apr 2018 at 00:08

We are all different. I ask people that have had treatment, I tell people, John tells people - particularly those who say daft things like "it's the best one to get" or "my friend's brother's father has it and he is fine" ... my most usual response of "ooh, that's lovely to hear - does he use injections or just a vacuum pump to have sex?" usually stops them in their tracks. It has also ensured that friends are more motivated to keep an eye on their husbands / partners / fathers/ mates!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Apr 2018 at 08:01

I think that is amazing Lynn and so important.

As we have no first hand experience of the full side effects i would only be talking anecdotally so not powerful and indeed coming across badly as we opted away from surgery ( for now at least). I like to hope if we had/ do experience the full side effects of surgery we would both be like you brave enough to break the taboo.

The lasting side effect we have personal experience of is the dry orgasm and this we knew 100% of men who have surgery experience and 30% of men who have an FLA have a dry orgasm ( and the bigger the area ablated the bigger the risk).

Even that I didn't mention to someone I had known 22 years...

Surgeons should be mentioning the risk of penis shortening and atrophy ... A standard disclosure of all risks is an easy fix surely.

User
Posted 25 Apr 2018 at 11:07

Thnaks Peter, answered your survey and read your story. Wish you good.


Paulo

User
Posted 25 Apr 2018 at 13:29
Originally Posted by: Online Community Member

I think that is amazing Lynn and so important.

As we have no first hand experience of the full side effects i would only be talking anecdotally so not powerful and indeed coming across badly as we opted away from surgery ( for now at least). I like to hope if we had/ do experience the full side effects of surgery we would both be like you brave enough to break the taboo.



Not amazing; I have made a whole career of talking about things that other people can’t find the words for. To me, it is about mental health - the DJ in our local pub was diagnosed so I told him how we had been affected. He cried; he was struggling with the side effects of surgery but had no idea that a) it was common or b) there were people he could be referred to for help. Nor did he have any idea that the cancer could come back - his surgeon had basically said “I am great and you will be cured” so it was a shock to him that John had had a recurrence. Naive yes, but much more prepared if that ever happens to him.

The psychological effects of PCa are under-researched and under-resourced ... one of the reasons Pete’s research questionnaire is a good thing to complete.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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