An unexpected diagnosis.

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

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.

John

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.  

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

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?

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!

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.

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.

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.

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!

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

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.

AC

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!

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.

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. 

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

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.

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.

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.  

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. 

Best of luck tomorrow. Hope all goes well.

Phil

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.

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

Good luck

Phil