109 days after 2nd mpMRI, finally, a result!

If you were my brother / uncle / mate, I would be marching you to the GP to request a referral to an oncology department in another hospital; I think I would have lost faith in the current one.

It seems from what you are saying that it is now probably too late for surgery anyway. On the up side, as a full time carer, you are almost certainly better having the RT / HT combo as it will impact less on your ability to care for your partner. When you get to see an oncologist, you can ask things like 'I am a full time carer so can I have 20 fractions at a slightly higher dose rather than 37 fractions (days)?' or 'as a carer, is it possible to have my RT in the summer when it will be easier to get support for my partner while I am at appointments?' and 'as a carer, would it be possible to book all my appointments for about the same time of day so that I can liaise with social services (or friends and neighbours) about house sitters, care assistants, etc?' Depending on how far away you live from the hospital and whether or not you drive, you might only be out of the house for a short time each day as the actual zapping doesn't take very long.

The research suggests that the higher dose over fewer fractions actually leads to less side effects.

You are allowed to request a referral to any oncologist, it is called patient choice. But if the nearest hospital is 17 miles away and you need someone to sit with your wife while you are gone, perhaps a referral to a hospital even further away is not the best idea? It is only guesswork right now anyway but if the onco did want you to have HT first, the longer you are on it before the RT the better so maybe with a referral now you would be able to have the RT next Autumn. It might even be that when you see the onco s/he still recommends brachytherapy; don't assume it is off the table just because the uro says it is.

Once again, many thanks to you both! That certainly gives me a lot to think about and a lot of 'ammunition' to shoot at the oncologist when I see him/her. I like what you say about the three cups of water only Chris and the 'micro enema'. Last time I got an enema, it was just a large, long tube of water and no possible way of inserting it! I think my partner had one of the ones you mention. Something called 'micralax' if I remember rightly. Built in scanner? Oh that's good. Having had another MRI, I imagined something similar every day! And Lyn, less side effects? Oh yes please! I also like the sound of delaying RT with HT, but won't that also give the cancer just that bit longer to grow even bigger and maybe into the lymph nodes? I don't suppose it will, but I'm trying to grab as much info as I can ASAP, because I'm banking on the Uro now actually DOING something very soon. At least I hope so! Thanks again! 😀

My partner wonders if it's the same type of HT that women get, as she doesn't want me to have a bigger chest than her!

, Tony is having HT at the moment and what Cheshire Chris says is right, you to have HT before you start the RT (not sure how long before but think its 3 months) then you have the micro enema and water to make sure lower bowel is empty and the water to make sure everything is in the same place for each treatment. Tony has not had any rea problems with the RT and next week is his final week.

regards barbara

Well that's an awful lot to think about right there! But thank you all anyway. I had heard that Tamoxifen is really expensive? I hope to NOT have daily enemas, as they do funny things to me. But some would be acceptable. Good news is I should hear from my Onc, in the next couple of days. Seems that they must be feeling guilty for just forgetting about me! I will keep you posted. Funny thing, this morning I had an email, just one of those adverts that we all get. It asked me if I had small breasts and wanted to do something about it! Well it looks like that may be happening without their help anyway!

I don't think shrinking the tumour is required for external beam RT - whatever the prostate size, it's in contact with rectum and bladder and pelvic floor. (It is required in some cases for brachytherapy.)

There is research suggesting the PSA at start of RT has an influence on outcomes, and impacts the justification of HT after RT. I looked at two papers that found if you can get your pre-RT PSA down to 0.1, this improved outcomes in some ways. I delayed my RT by 2 months in order to do this. However, it's important not to delay your RT unless your PSA is coming down at a good rate. My onco had had a couple of patients try that before, and they never got there before it started going up again, and you don't want to delay RT until PSA is rising - you've kind of blown the reason for being on HT if that happens.

I suspect best time to have RT is when HT has pulled PSA low and it's still going down at a reasonable rate. That requires more monitoring than is currently done (in my case, I did that myself), and so the broad brush 3 months or 6 months is most often used instead.

20mg tablets are very cheap. When I looked a while back, all other tablet sizes were about 40x the price. Dose for breast growth avoidance is usually 2 x 20mg/week, but dose can be increased up to 20mg/day if needed. You must have periodic liver function tests if you are on it, to make sure it's not giving you non-alcoholic fatty liver disease. My consultant and GP were both happy for me to set my own dose according to symptoms so I can minimise the dose, as my liver is not overly keen on it. I managed to stop it completely for 8 months when I switched from bicalutamide to Zoladex, but just had to go back on to 2 x 20mg/week.

Thanks Andy! That's a good lot of info for me to digest. I'm one of those people who, if there are side-effects to be had, I usually get them! So I hope HT tablets don't come with that. My PSA is 9 at the moment, so will probably take a while, though I've heard that PSA is not a very good judge of where your PC is at. Yet people seem to use it as an important reading AFTER a Prostectomy. Please excuse my ignorance on the subject. I suppose it must be more important than people think? Like I said though, my Uro never even mentioned the HT, so hopefully, seeing my Onc in the next week? 2? 3? will put me in the picture a bit more.