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An unexpected diagnosis.

Posted 25 Oct 2018 at 00:52
Unfortunately, a lot of surveys give varying views on the success of treatments applied singly or also in combination with another. For instance, based only on success rates, one very large study that has been previously linked to on this forum, put Brachytherapy with and without the addition of External Beam slightly more successful than Prostatectomy. But the whole treatment package and possibilities has to be considered by an individual as what he feels is best for him where there are options.

One leading urologist thought it might be possible to treat PCa in the Prostate in the future by injecting by injecting it..

Posted 25 Oct 2018 at 01:54
The brain tumour research we raise money to help fund has been working on injecting the herpes virus into tumours. It is looking rather exciting.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 25 Oct 2018 at 16:18

We have now seen the surgeon who came over a bit like a car sales man! I'm sure he seriously believes surgery is S's best option but when faced with questions like 'nerve sparing' and 'salvage treatment' (Thanks Lyn) he was very matter of fact and told us there could be no nerve sparing and that S would definitely lose ED permanently and had a chance of being incontinent long term. He also agreed that there was a high possibility that S would end up Adjuvant, RT/HT but reassured us that the nursing team were expert in helping out with long term problems. 

S asked a question I wasn't expecting. He said, "If I choose the third option which is to do nothing, what would my life expectancy be?" and the answer was incomplete but interesting. He was told that because this cancer is adenocarcinoma, the likelihood is, its taken ten years to get this far and could take another 10 years before it became a real problem. That said, the time scale could be much shorter but because they don't have any particular studies in this area, it would be impossible to predict. He did however, say that it may be a good idea to take time to think about what he wants to do. S asked, if he took twelve weeks, would he have to go through all the tests again and the surgeon said no because 12 weeks really wouldn't make a scrap of difference.

Before we'd even left the hospital S had decided he didn't want surgery. I of course stand by his decision, though secretly I'm pleased.

Posted 25 Oct 2018 at 18:02

Hi Maria,

I haven’t noticed you have told us S’s age, or did I miss it?

I think it’s fair to say that most surgeons want to surge, and most oncologists want to attack you with either their ray-guns or toxic chemicals. The outcomes (morbidity rates) these days are broadly similar.

I consulted with two surgeons and one oncologist before electing for surgery, and all three said surgery was my best bet. Mistake.

I am supposed to be cured now. One surgeon offered non-sparing and the other nerve sparing on one side. It has made no difference as I have no erectile function, but then I have no cancer (subject to another PSA test tomorrow....).

I think my best advice to you and Mr S is to take your time, step back and request second opinions from both another surgeon who is not interested in flogging you a motor, and an oncologist. There are so many “what ifs” with this disease. I think you are entitled to those two additional consultations on the NHS.

I sometimes wonder ‘what if’ I had done nothing and still had hard-ons and ejaculatory orgasms for however long, but we had no idea how fast my tumour was spreading as there was a long gap between my normal PSA test and the raised one.

Click on my profile to get the gory details of my story!

Anyway, I have never felt so well, and the best of luck to you and S whichever path you choose to take. Do let us know.

Cheers, John.

Edited by member 25 Oct 2018 at 18:07  | Reason: Not specified

Posted 25 Oct 2018 at 18:22
Hi Maria, glad you've finally had the chance to discuss your husband's options with the Onco. There's so much to take in. I'm sure others with the same stage PCa will be along to give you their experiences. Whatever he decides (although it appears he's made the decision already) I wish you both all the best. I think keeping a positive mental attitude, which isn't always easy I know, will spur your partner on. He's very lucky to have you as his support, taking in as much advice and info as you can off this site and forum, etc. It's given me (the daughter of a T3b patient) comfort and information so that I can support both my dad and mum to the best of my ability. Keep the faith. X
Posted 25 Oct 2018 at 18:35
Hi Maria

When your OH asked about the do nothing option is he referring to having no treatment whatsoever? I've been on prostap since 3/9 and have had 2 chemo sessions, next one due on 12/11.

The reason i went to the Drs back in May was because i was peeing a lot and i was diagnosed with Advanced Prostrate Cancer. i've got to say since i started the treatment the peeing problem has been largely alleviated although i'm drinking loads of fluid at the moment to wash the chemo out of my system. My PSA has dropped from 13.94 on diagnosis to 3.35 last Saturday so that was a big positive.


Posted 25 Oct 2018 at 18:50

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

Posted 25 Oct 2018 at 19:00


Thanks lisabun.

I had a whole page full of questions and having already read a lot of articles and profiles on this site, especially of men with a similar diagnosis, I sort of knew what those answers were going to be but Steve needed to hear those answers from the horses mouth. 

This site has helped us both enormously (For S that's indirectly). Knowing we are not alone and that the people here, people who have been through this hell or are still going through it, but who are still willing to make the time and effort to advise and support new sufferes has been heartwarming.  

Posted 25 Oct 2018 at 19:06



Hi John, yes, he was referring to no treatment at all. I don't believe he will go with that option but regardless, it was a very valid question and clearly not one they seem to know a lot about. 

I'm sorry to hear your diagnosis came so late but it sounds like you are doing well on the prostrap and chemo. 


Posted 25 Oct 2018 at 19:48

Originally Posted by: Online Community Member

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

Hi Maria, 

I see you mentioned 53 in the first sentence of your original post. Sorry I didn’t spot it at first.

If I were only 53, I would not want to ‘do nothing’ for up to thirty years, when there is an excellent chance of remission now, albeit with the potential for side effects. So as I said, take your time before deciding on any treatment and as our Matron here was advised, ‘have plenty of sex’!

And do take advice from your professionals as well as the armchair amateur urologists here, although some are so knowledgable they could qualify as semi-professionals at least!

Cheers, John

Posted 25 Oct 2018 at 23:35

Originally Posted by: Online Community Member

Hi John, yes, he was referring to no treatment at all. I don't believe he will go with that option but regardless, it was a very valid question and clearly not one they seem to know a lot about. 

I'm sorry to hear your diagnosis came so late but it sounds like you are doing well on the prostrap and chemo. 



There is an important distinction between doing nothing and going on active surveillance. AS is not necessarily a permanent choice; some will use AS until their stats change, or the side effects of prostate enlargement get worse or they have passed an important milestone or holiday or whatever. Doing nothing is likely to end in a sooner demise than AS. 


But if the surgery would not be full nerve-sparing then he is clearly not a suitable candidate for long-term AS; taking a bit of time to think & weigh up options and perhaps enjoy Christmas wouldn't be a bad thing though. 

If you are curious about the 'do nothing' option, my father-in-law opted for that one because he refused to have any treatment that might spoil his sex life. He had a G7 (thought to be T2 but will never know for sure) and he lived 4 years.  

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

Posted 26 Oct 2018 at 17:25

Sorry you lost your father-in-law Lyn. Did the cancer get him after four years or was it old age?

There was a bit of a breakthrough yesterday regarding where S's head is. He told me last night that everything so far has come over as urgent. It felt to him like he has to drop everything and act now or he will die. Being told to take up to twelve weeks off to make a decision has calmed him right down and I believe he will now be ready to take the driving seat regarding getting to know his illness and dealing with it in a way that will best suit him. I doubt very much that he will take twelve weeks off but by stopping this blind panic, I think he's going to be able to plan what's right for him. 

One of the things he mentioned last night was stand alone hormone treatment whilst on active surveillance. Have you heard of anyone doing this at his stage of cancer?

Our next step, which is next Wed, is to talk to the Oncologist about HT and RT. Should he be asking about what type of RT and are there different types of HT?

One of the things the surgeon said is, because of S's age, otherwise good health and fitness, he would probably be an ideal candidate for a RT trial. 

Oh and another thing is, our middle son is getting married in Thailand next April and we have already booked flights and accommodation. If he does opt for RT will that of likely started before next April?

Posted 26 Oct 2018 at 17:47

You should definitely take the guidance from the team looking after your husband. Although many on here may have what appear to be similar conditions everyone is different and it’s probably best to face up to the condition once you have all the facts. 

Given what you know so far it’s unlikely HT on its own will be suggested. It’s also worth noting the side effects can be significant. I’ve discussed it with a friend who went the HT/RT route and it’s definitely worth doing the research before going down that path. Whatever you choose should be an informed decision so you don’t have too many surprises. 

Whatever route you take the odds are good for you to still be able to go to Thailand in April.

Whilst it‘s good to take ownership of the condition it doesn’t have to be all consuming. Life will go on and having things like your wedding trip in April to look forward to will help keep those clouds of doom at bay.  

Posted 26 Oct 2018 at 18:12
Mike is absolutely right - HT is not something people would have just for the sake of it. If you opted for RT/HT or brachytherapy (with or without HT) then there would usually be a 3 or 6 month phase of hormones before the RT begins so the onco is almost certain to be able to time it for after the trip to Thailand if you let him / her know.

You need to let the insurer know about the diagnosis but best wait until you know a bit more about the treatment plan.

No he died of prostate cancer; it spread to his soft organs without anyone noticing because his PSA did not behave in the usual way.

Yes there are different types of RT. EBRT just means any form of external beam RT; IMRT uses a computer programme to design a package which goes to various depths to reduce the risk of unintended zapping of healthy tissue and IGRT is image guided so they scan at the same time to make sure the zaps get where they are supposed to go. Brachytherapy has two forms - either permanently or temporarily implanting radioactive seeds in the prostate. Some oncos don't bother with HT if they are doing brachy but the parameters of suitability are quite narrow so it may not be an option in your case.

With EBRT, the radiation is given in doses called Grays over a number of appointments called fractions. The traditional pattern has been 37 fractions (days) of 2Gy - so 74Gy in total. Following a big trial, some oncos will now opt for 19 or 20 fractions of 3Gy or 3.2Gy (a total of about 60Gy) after it was shown that the higher dose over fewer days was just as efective but caused fewer side effects.

So you could ask the onco:

- will IGRT be available at your hospital

- how many days / fractions are they recommending

- how long will he be on hormone treatment

- is brachytherapy a possibility

I would also want to know about the RT trial they are doing. John was on the trial that decided men could actually cope with more than 2Gy at a time without spontaneously combusting!

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

Posted 26 Oct 2018 at 18:15


Thanks Mike, that's reassuring about the trip to Thailand. We will mention it to the Oncologist next week.


One of the things we asked the surgeon was, what was the likelihood of S still having to have salvage treatment post op and he said it was quite likely. This means regardless of surgery, he would still have to have RT and possibly HT as well. 

I've read a lot about the side effects of HT and when I initially spoke to S about what to expect, he was adamant he didn't want HT. He still knows what the side effects are but now seems keen to go down that route; though obviously he needs to speak to the Oncologist and get the bare facts. 

Posted 26 Oct 2018 at 18:26
Maybe jumping the gun but I think you’ll be offered surgery or HT/RT. In my experience they try and not push you too hard in either direction.

I was G9 and post op biopsy T3b. The surgeon thinks the operation was successful and I won’t need any salvage RT but I’m waiting on my first post op PSA test before assuming anything.

My friend was G10 and after having a look and finding it had spread to lymph nodes they closed him up and he had HT/RT. It was done in Belgium where they used a pump to expand the area before doing each 10 min RT treatment. It was uncomfortable but avoided too much damage to surrounding areas. He is clear and they have taken him off HT early (18 months approx). He used exercise to minimise some of the HT effects.

Posted 26 Oct 2018 at 19:12

Thanks Lyn, that's very helpful. 

Is IGRT better than IMRT?

Very interesting about 19 to 20 fractions of 3Gy. That's certainly something to enquire about. I've listed the other questions to be asked. 

Posted 26 Oct 2018 at 19:20


It sounds like you are doing really well post op Mike. Fingers crossed on your PSA test.


Thanks Mike

Is this treatment your friend had available in the UK? 

Do you know what side effects from HT were reduced by exercise.

Posted 26 Oct 2018 at 19:31

I’m not sure if the specific RT he had, or similar, is available here or indeed where. I expect it is but haven’t delved deep enough. The idea of minimising impact on surrounding tissue sounds like a good one. 

He said he didn’t get much weight gain or depression using exercise. He’s always been quite fit and everyone is different but it worked for him and he’s come out of it ok. 

Posted 26 Oct 2018 at 20:39
In some European countries they use balloons filled with air to hold the prostate in position; I don’t think it is done in the UK but that might just be because we have gold seed implants and IGRT.

Some hospitals have access to Spaceoar which protects the bowel from any unintended radiotherapy spillage but you need to see what your onco says. It is usually a priority to keep the bladder out of the way but in my OH’s case they needed to include the bottom of the bladder. If they have already said that your husband can’t have nerve sparing, that suggests that the tumour is on the outer / upper limit so their priority will be to ensure that area is within the zapping zone - balloons and spaceoar gel might not be appropriate.

Yes, IGRT is the more recent version of IMRT; I don’t know what proportion of hospitals have the equipment though.

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

Posted 01 Nov 2018 at 15:27
An update.

S saw the oncologist yesterday and things didn't go well. We had a whole load of questions to ask which seemed to annoy the oncologist. When I asked if the RT was IGRT he said, "don't worry, we have the very best RT" so I repeated my question and he repeated his answer. He was most insistent that S should have surgery if it had been offered and didn't want to listen or talk in depth about alternatives to surgery. S just ended up getting frustrated and annoyed and I just sat there thinking, I don't blame him, this is awful and clearly this man doesn't appear to have his back or have time for his questions.

So we came home and S didn't want to talk about what had happened that afternoon but I could feel him sinking into a very dark place over the rest of the day. At 1am this morning he suggested he'd just be best out of this all together. He's clearly not coping with feeling so out of control and the feeling that he's being railroaded into something he may later regret is too much. Other than listen to him and be there for him, I'm not sure what else I can do. I've told him I will support what ever decision he makes but if he decides to do nothing, that's going to be seriously tough.

I've suggested we speak to a different oncologist and at least he's agreed to that. I've also suggested he goes to his GP and speaks about his worries because he hasn't seen his GP since his initial visit with symptoms.

Posted 01 Nov 2018 at 15:36
Some of the best medical practitioners do not have the best bedside manner but I think you’re right to seek a second opinion.

Apologies if you’ve already covered this but have you had a similar meeting with a surgeon yet? I think it’s worth doing. Surgery is by no means the worst route. The good news is they have caught it while it’s treatable. It’s horrible news and life will change but if all goes well you’ll be able to get through this and be cancer free.

Through Prostate UK I was put in touch with men of a similar age and diagnosis. It was really helpful and encouraging to hear their experiences. It also helped guide me to which treatment route was best for me. I recommend it!

Posted 01 Nov 2018 at 16:07
They have already seen a surgeon who recommended that RT would be the better option and that surgery would be non nerve sparing with likely adjuvant RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 01 Nov 2018 at 16:18

Hi Maria,

Definitely get a second opinion from a different oncologist, maybe at different hospital if there is one in your vicinity. It does seem a terrible shame that that guy didn’t want to be completely open with you and answer any and all of your questions in what is potentially a life and death matter!

I had consultations with two surgeons and a oncologist prior to my prostatectomy, and have seen two oncologists since. They were all very professional and personable, and happy to answer all my questions.

Perhaps your consultant was having a bad day. Men don’t have PMT do we?

Hope it all works out for the best.

Cheers, John.

Edited by member 01 Nov 2018 at 16:20  | Reason: Not specified

Posted 01 Nov 2018 at 16:20
Thanks Lyn. Perhaps they should ask to see a different surgeon? I had a multidisciplinary team so the communication was perhaps more thought out before it came to me.

You do need to have faith in the team to help with the worry but it does need strong management on the NHS side.

What would you recommend now?

Posted 01 Nov 2018 at 16:37
Mike, multi-disciplinary teams are standard practice, what differs is who takes the lead in discussions with the patient. If RT is the recommended approach, it will be the oncologist, if surgery, then the urologist.

In this case, it is simply a matter of finding an oncologist who gives the patient confidence. There may be more communicative ones at the same hospital. That would be better since all the records would be available. If not, the patient should select a different hospital, but in our non-joined up, non-national NHS that may involve delays. The GP may be able to advise and facilitate the change.


Posted 01 Nov 2018 at 17:02
I think a conversation with the GP is a good starting point and then a referral to a different oncologist or, if the person you saw was not the consultant but an underling, perhaps a second appointment but with the top dog instead. Sounds to me like the doctor you saw had not read (or hadn’t been given a copy of) the notes from the surgeon.

Can you afford to pay for a consultation? Often costs around £250-£300

Was it definitely the consultant oncologist that you saw rather than a junior doctor or registrar?

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

Posted 01 Nov 2018 at 19:58
Thank you for your replies.

I did speak to a nurse on here this afternoon and like you Lyn, she suggested he speaks to his GP and gets a referral to a different oncologist. If seeing an oncologist privately speeds things up, that's definitely worth some consideration.

The Oncologist didn't look like a junior but he was definitely titled 'Doctor' and not 'Mr'.

S doesn't want to speak to anyone with PC at the moment Mike. Hopefully that will change in the coming months. The nurse I spoke to today asked me if I would like to talk to a couple of volunteers myself and I said I would.

That book, 'Guide to Surviving Prostate Cancer' fourth addition, arrived through our door today. S just handed it to me so it looks like I'm going to be doing lots of 'out loud reading' for the next few days!

Posted 01 Nov 2018 at 21:30
Oncologists are referred to as Dr - it is only surgeons that are called Mr, Mrs or Mx

Happy reading. John has never read a single thing in the 10 years since diagnosis :-/

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

Posted 02 Nov 2018 at 07:49
Don't get treated by anyone who you don't have confidence in.

Check local recommendations if you can and see an NHS consultant privately. They will have time to answer your questions, my oncologist even gave me his personal mobile to call him.

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.

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.

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. 

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. 

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.


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.

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.

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

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.

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

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.  

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

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. 

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

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??
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.

Posted 22 Jan 2019 at 08:58

Best of luck tomorrow. Hope all goes well.


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.

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.

Posted 23 Jan 2019 at 23:02
Great news fingers crossed for s full recovery.
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


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