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User

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.

Maria

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

User

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?

User

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.

User

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

User

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.

User

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.

User

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.

User

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.

User

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.

User

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

User

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.

User

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!

User

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

User

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

User

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?

User

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.

AC

User

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

User

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!

User

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

User

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.

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