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An unexpected diagnosis.

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User

Posted 04 Nov 2018 at 14:25

Mr A, I'm sorry you had to go through that. I think its really unfortunate when someone gets a consultant with a poor and disinterested bedside manner. Its good to know the results of that encounter ended well for you.

They have told S that he will be seeing another oncologist within a week.

User

Posted 04 Nov 2018 at 14:41

His surgeon gave him his number Franc. He also gave him a huge amount of time and answered all our questions clearly. We are arranging to speak to the surgeon again and feel confident about contacting him.

you said: "Tell your fella he has to deal with it, you are not his mother, if you push him down a path and it is a disaster he will blame you when it is him that should be making these important decisions with your support but not direction"

Absolutely. All I can do is support his decision, whatever that is and I have no intention of pushing him one way or the other. What I'm doing is giving him all the information I'm gathering so he can make a more informed choice and ask the right questions.

I'm not overly concerned about his lack of urgency but I am inwardly worried that he's treating his cancer like its a slow growing blip contained within the prostate, when its very clearly gone beyond that. He's been told one thing by the surgeon and something else by the oncologist and he's clearly chosen to go along with what the surgeon said. Hopefully this next talk with a different oncologist is going to make things a lot clearer.

User

Posted 09 Nov 2018 at 16:44

Steve saw another oncologist today and he spent a good hour answering all our questions. We have come away feeling a lot more informed and supported which is great. It looks like Steve is going for surgery but he's still refusing to have the op on the 11th December because he says he's not ready. Perhaps he will change his mind in the coming days or when he next speaks to the surgeon.

User

Posted 09 Nov 2018 at 17:02

It's great to hear Steve is feeling better about it all. I found accepting the diagnosis a challenge too but felt much better psychologically once I came to terms with it and had some ownership. I expect pretty much everyone has the same reaction. You should speak to the surgeon about whether it's OK to delay the surgery. They will be best placed to advise as they have all the facts. I delayed my surgery by a couple of weeks so I could go on a planned trip, I had the surgeon's full support but was advised against any further delay. I also wanted to get it over and done with once I knew this was the route I was taking.

I know now that if I had delayed by another few months I would have faced a bigger problem and possibly it would have been too late to go the surgical route. That said one thing I have learnt is every case is different and all men have their own way of dealing with the diagnosis. No one way is the correct way.

I think I've said this before but Prostate UK can arrange for someone to call Steve who's had a similar diagnosis and been through the surgery. I spoke to a couple of guys and found it very helpful to chat openly about all aspects of the surgery and recovery.

Despite all this I hope you both mange to relax and have a good weekend.

Mike

User

Posted 10 Nov 2018 at 07:44

Thanks Mike,

He still isn't interested in talking to anyone. I however have spoken to both a man who has been through a similar diagnosis and surgery and a wife of a man who went through the same and I found that to be very helpful.

User

Posted 10 Nov 2018 at 15:45

Originally Posted by: Online Community Member

Hi John, S is 53. I like the idea of second opinions.

Only just read that bit today, a double whammy - a Big C diagnosis, and at an ‘early’ age. I think there are a few here in their forties.

Cheers, J.

User

Posted 10 Nov 2018 at 16:18

I was 48 at surgery and am now 51. I’ve been told I’m incurable. There’s not a lot I haven’t been through to be honest , but am happy to speak to either of you if you need that. Surgery is horrendous tbh to a younger man ( as well as older guys ) , but I guess it becomes necessary. No easy way to treat PCa without life changing side-effects. A strong marriage can get you through I promise. I wish I’d not put it off for so long as I may be cured now with good health and a good erection 3 1/2 yrs on , instead of rapidly advancing Psa and certain secondary cancer if they can find it ! Click my picture and read my profile

Edited by member 10 Nov 2018 at 16:22 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 10 Nov 2018 at 18:13

I too had a fluctuating PSA and went the antibiotics route. After 12 months of monitoring they noticed something had got larger on the MRI. A couple of months later I had a template biopsy which came back as G9. I was offered RT/HT or surgery but after research and discussion had the op 6 weeks ago. It turned out to be T3b and no nerves could be spared. They think they got it all and the PET scan was clear. I will have my first post surgery PSA result next week.

I’m single so didn’t have the benefit of partner support but I had great support from family and friends. There’s obviously compromises with whatever route you take but the main goal for me right now is to be cancer free.

My take from all this and hearing other people’s stories is once diagnosed it’s best to take action unless specifically advised against it by the team looking after you.

User

Posted 10 Nov 2018 at 18:59

I agree entirely, neither route is appealing and my gut feeling was just to run away from it all. Sort of ‘this can’t be happening to me’ thing.

There are positive and negatives for either route but encouragingly I spoke to men who’d gone both routes and were cancer free and living happy positive lives years later.

In my case they thought I was T2 when going into the surgery, it was only afterwards it was amended to T3b.

I have a friend a year or two ahead on this who was G10, initially they were going to go the surgical route but he ended up with RT/HT and it seems to have gone well.

Edited by member 10 Nov 2018 at 22:38 | Reason: Not specified

User

Posted 21 Jan 2019 at 21:28

Hi guys, sorry I've not been around recently but because Steve had more or less decided to ignore things, I went to ground and got myself all depressed. The good news is, he's having the operation on Wednesday. He will be home (hopefully) after two nights in hospital.

User

Posted 21 Jan 2019 at 21:32

Wishing you guys all the luck, im sure youre in very good hands. get this done and start the road to recovery.

Good luck guys xx

User

Posted 21 Jan 2019 at 23:02

He’ll feel a bit shell shocked straight afterwards but hopefully a big sense of relief too. wishing you guys all the best of luck.

User

Posted 22 Jan 2019 at 00:47

That's a surprise - I thought he was veering away from surgery and towards RT? Is it still going to be non nerve-sparing or did you find another surgeon that was willing to take the risk?

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

User

Posted 22 Jan 2019 at 06:54

Assuming that's why they are using the frozen biopsy technique to make sure they get clear margins with minimum damage??

User

Posted 22 Jan 2019 at 08:17

S is most certainly in the good hands of Professor Whocannotbenamedhere and his sidekick Da Vinci, with the live biopsy as an added bonus.

I hope his procedure is as virtually pain-free and as successful as mine was.

Best of luck on Wednesday.

Cheers, John.

User

Posted 22 Jan 2019 at 08:58

Best of luck tomorrow. Hope all goes well.

Phil

User

Posted 22 Jan 2019 at 21:36

Thanks everyone.

Steve had a full meltdown this afternoon and said he didn't think he could go through with it. He seems a lot calmer now, but I hope he doesn't have more panic attacks as we get to the hospital. Do they still give pre-meds? he could certainly do with something to calm his nerves.

Hi Lynn, he doesn't want to take any risk but he has chosen a surgeon who will be doing intraoperative frozen section so no more needs to be taken away than necessary. If that means there's some nerve sparing then that's great but if there isn't, that's how it has to be. When he spoke to his surgeon at Addenbrookes he told us he highly recommend this route and went on to say that Addenbrookes along with other hospitals up and down the UK are actively trying to introduce IFS.

Hi Francij, that's right and like you suggest, its not about compromising the patient.

Big hugs Michaela... you are a shining light xxx

It would be nice to be virtually pain free John' lets hope so and btw, I owe you a massive thank you.

User

Posted 23 Jan 2019 at 21:17

So he had the surgery today, though very nearly walked out before the anesthetist arrived. Fortunately they put his operation forward which took him by surprise!.

The surgeon called me whilst he was in recovery and was pleased with the outcome. He had thought he'd have to remove the nerves from at least one side but the intraoperative frozen section showed no cancer in either nerve cavity so all the nerves have been preserved.

Anyway, he's sat up in bed, relieved but sore. Very happy with the outcome so far.

User

Posted 23 Jan 2019 at 23:02

Great news fingers crossed for s full recovery.

User

Posted 24 Jan 2019 at 07:41

So pleased for you both. And hope for a good recovery. Please keep us updated on Steve’s condition .

Good luck

Phil

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