RT without HT

You may find my experience interesting but every man has to make his own decision and weigh up the Pros and Cons on this aspect as well as in others respects. I think you also need to take into account the latest advice which comes through experience of medical bodies throughout the world as best choice.

I started my HT directly after diagnosis towards the end of 2007, the idea being that I would have 3 months of HT and then RT. I can neither remember nor find anything in writing advising that I should have HT post RT. (My PSA on diagnosis was 17.6, my staging T3A, locally advanced with no spread seen outside the Prostate and Gleason 3+4). I had no idea whatsoever about PCa but began to research it extensively and decided to have my RT in Germany where I was accepted into a trial. I remember writing to the Royal Marsden saying my RT would be delayed for operational reasons, so how would they consider two further months of HT to cover the period up to and including most of the RT. The Marsden replied that this "would do no harm, no harm at all" . It was subsequently established that having 6 months of HT before RT produced better results than 3 so I was on the right side of chance as it happened.

So I had my last injection of Zoladex in Germany during treatment and then resumed care under The Royal Marden who never suggested I have further HT. Years later I was offered it when my case was taken over by UCLH but I declined it saying i just wanted HIFU.

In retrospect, I think I was lucky to have had the extra HT prior to and during RT when it has been shown to be more beneficial. Although for a time it was thought 3 years HT post RT would be beneficial, this seems to be less rigidly followed now with men having variously less time on it according to their individual feelings, progress and views of their Oncologists. My view is that HT is of greater benefit earlier rather than post RT but that's only my view I am sure there are individual cases where post RT, HT helps.

Peter, I have had surgery, salvage RT two courses of SABR treatment. I swore I wouldn't have HT.

Three weeks ago I started six months of 150mg daily bicalutamide. It has caused a bit of constipation and upset stomach possibly a bit of pain in my already defective kidneys. After changing my mind a few times I took the view that if it gets too much I will stop taking it.

I didn't have HT with the salvage RT, the MDT decided it was not right because of a stricture I developed,so in my case treatment was tailored to me.

The oncologist said it was optional but advisable.

Good luck with your choice.

Thanks Chris 

Edited by member 21 Jun 2023 at 20:53  | Reason: Not specified

I had 18 months of bicalutimide.   Started 3 months before my salvage radiotherapy. 

I've no regrets.  As my prostatectomy hadn't succeeded, it was my last chance of a cure.

It worked.  PSA now <0.006.

Lyn, I did think about mentioning that very valid point, and is one of the reasons I eventually decided to go ahead ahead with the HT this time.

Thanks Chris 

I think you meant reluctance to have HT rather than RT in your second paragraph.  As regards your comment about not doing anything until symptoms appear, sometimes  PCa can advance quite extensively without any symptoms, so I would urge you to consider PSA and follow up scans rather than ignore until symptoms appear.

Edited by member 23 Jun 2023 at 01:55  | Reason: Not specified

Hello Jules, I wanted to say sincere thanks for your post as it did give me the kick up the a*se that I needed and make me think differently about my diagnosis, having effectively been in denial and on self-imposed AS for four years

I know now that the cancer is the enemy, RT is my army and HT is a band of mercenaries which will fight on my side, albeit at a cost

The HT won't kill me and I accept that whilst it may affect how I live, at least it will help me to live and hopefully help avert any recurrence

So here we go, MDT advised and now waiting for the get-go

Thanks again

Peter

Gutsy decision Peter, so congratulations and all strength to you. I hope you'll stick around here to add your voice to the support system. There's some terrific knowledge and experience here and it's helped many people, including me.

You'll probably find the mercenaries a bit hard to handle for a short period but in a couple of years time I think you'll be very pleased you went the way you did.

Thanks for your very generous post 😀

Jules

Bicalutamide is more liable to generate breast gland growth than the injectable hormone therapy drugs, and it really should be given with Tamoxifen to prevent this unless there's a medical reason you can't take Tamoxifen (such as a history of DVT or cardio issues). The 28 day anti-flare dose isn't long enough to cause this though. Other than this issue, the side effects from Bicalutamide are significantly lower than from the injections, but also it's less effective for some use cases. If you're on Tamoxifen, you should have a liver function test after 3 months, to ensure your liver is coping with it.

The injectable hormone therapy drugs can also generate breast gland growth but it's rarer. You can still ask for Tamoxifen if you start getting breast pain (usually the first sign of breast gland growth), or can feel breast gland tissue developing.

It's good to have a really good feel of your breasts and nipples before starting hormone therapy, so you can later identify any changes.

Tamoxifen only works for breast gland tissue growth (gynecomastia), not breast fat tissue (moobs, which are painless). The NICE recommended dose is 20mg/week which may work if you start it with Bicalutamide, but if you wait until you have breast pain, you'll probably need a higher dose at least to start with. The doses prescribed vary considerably from 20mg/week up to 20mg/day, but doses that high do cause non-alcoholic fatty liver disease in some women who take it for breast cancer, hence important to keep an eye on liver function and catch any issues early before they start causing problems.

Edited by member 24 Jun 2023 at 08:55  | Reason: Not specified

Hello Lyn,

Other than your husband, I rarely hear of anyone being refused Tamoxifen for gynecomastia, except due to the medical contraindications I mentioned. The 20mg tablets are dirt cheap (other sizes aren't).

I was refused it prophylactically when I started Bicalutamide, but as soon as I mentioned I was developing symptoms (3 months later), I got the Tamoxifen the same day.

The use of 150mg Bicalutamide for 1-2 years instead of injections is increasing, and the use of Tamoxifen with it.

Edited by member 24 Jun 2023 at 14:59  | Reason: Not specified

Thanks Andy, interesting read

My MDT has proposed breast-bud radiotherapy before starting bicalutamide and that was endorsed by the radiologist when I spoke to her. Tamoxifen as an alternative hasn't been mentioned so I'll ask

Whichever way you turn there seem to be potential issues further down the line and with breast-bud there's a 1% risk of developing breast cancer but I guess you add that to the general risk of other cancers developing anyway from RT for the prostate

If anyone has experience of BBRT it would be useful to know what to expect in a real-life situation as opposed to what the leaflets say

Peter

How about using Zoladex rather than bicalutamide? If potential [though not definite] breast growth is a concern, my understanding is that Zoladex is less likely to have this side effect. Possibly a harder drug to live with, though Peter will only be on it for a short period from the sounds of it.

Jules