An unexpected diagnosis.

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 17:20  | 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!