HT and radiotherapy - what a combination!

Hi and welcome (if new here?) although sorry you have had to "join".

Unfortunately there seem to be very different responses to what you describe. I was there 1st time around age 72 in 2021. I cycled every day of the RT 28 days and continued to do so for the 2 following years on 1/4ly HT (decapeptyl). ED inescapable, but apart from 10 minutes a day of mild hot flushes and an inch on my waist line no real side effects. Certainly got no worse over time.

I'm back on the HT+darolutamide tabs after a disappointing recurrence last August, but even this time increased tiredness not fatigue only "problem"  -  and continuing exercise only antidote.

So I don't see that should worsen beyond the RT. Maybe discuss a different HT with the experts? And an exercise regime?

Good luck, Dave.

Hello Louise

welcome to this forum!

It would help us all comment more fully if we could know your husband full diagnosis - eg Gleason score, possible spread , treatment plan etc.

for us, mt husband’s Gleason score was 4+3 =7 which is classed as high to intermediate risk. His staging was T3a N0M0. T3a means that the cancer was breaking out of the prostate wall into neighbouring parts of his body. N0 - no lymph node involvement detected. M0 . No secondaries detected. This helped to define his treatment plan ( considering, too, his age and his choices)

so - the HT initially seemed to us to be the easy part and RT ( radiotherapy) the scary bit. How wrong we were! 

it’s important to mention that men seem to cope better with HT than others. It’s also important to know that, whereas RT kills off cancer cells, HT can help to shrink the tunour(s) in readiness for RT and also stops the cancer cells replicating/spreading. So - big wins on this account.

Most men seem to get the same advice - push through the fatigue, exercise, good diet etc. what we were not told (and, in my opinion should have been) is that the ht can have the side effect of osteoporosis. calcium and vitamin d supplements are recommended by some to help prevent this. We were also not advised about the potential for long term erectile dysfunction. I would advise enquiring about this!

My husband struggled massively with the HT! He only had a few hot flushes but he had everything else: man boobs, loss of libido, low mood, brain fog, loss of stamina and fatigue, erectile dysfunction and osteoporosis the latter two persist 3 years after completing RT and almost 2 years since completing HT). I saw him age 10 years in 3 months! However, his PSA so far has remained very low, he has recovered his energy and his brain! He is enjoying life at a point that, without treatment, the cancer might have been taking hold!

I found the whole journey , perhaps, more stressful than my husband and, in the initial stages, was an absolute wreck. My advice to yourself is to involve family and friends - talk to them and ask for support. Our adult children were fantastic once they knew what was going on!

I wish you and your other half all the very best cxx

Thank you for this positive reply. 
my husband is exercising a lot (I didn’t mention that) but he runs and goes to the gym at least 4 times per week. He hopes that can continue. Emotionally he’s finding it hard and gets quite tearful. We’ll see how things develop…… and good luck to yourself. 

Hello Louise,

I'm 9 months in, but a little different as I had neoadjuvant chemotherapy (Docetaxel), also similarly HT (Prostap), and I'm on my 16th fraction of Radiotherapy thus far... I've had lots of side effects but they've all been mild and bearable, I do put that down to being young at 55, a physical job, my vegan diet, fitness (exercise and weights daily), and a positive frame of mind (my diet and exercise help massively with this),... I totally understand we are all different,  as in  ages, fitness levels/ability to exercise, and have different outlooks, but without doing these things I imagine I would struggle, especially with the fatigue... So far I've not missed a day's work due to any treatment side effects or complications ...

I know I'm not long term, but hope this helps...

Jay

Thank you for replying. I can relate to much of what you are saying. For context the details are Gleason 8, grade 4, T3a/T4N0 so similar to your husband. 
Thank you for flagging up the issues you mention. He’s taking vitamin d (and has been) so fingers crossed re the osteoporosis. He is also seeking help from a functional medicine doctor who will advise on supplements. Obviously libido and ED is very much an issue and we are in for quite a ride it seems, but we will get through it together… I find managing his emotions can be tough in the “down” moments but on the whole he’s doing his best to keep positive and exercise and continue life as normal. I suppose we just have to take a day at a time at this stage. The next month will be particularly challenging with RT sessions. 

Hi Jay thanks for this really positive reply and outlook. I couldn’t agree more and he is doing much the same as you. We eat well, he exercises regularly and trying to keep as positive as possible. it? Sounds like you are doing amazingly well. Keep it going!! 

Hello Louise (Louise73 ) 

Yes we are all different, and yes we all react to the treatment in different ways. I am 4 years into my personal journey, (you can read my story by clicking on my name or avatar) - but have got through thus far with a smile, a positive attitude and the help of my wife, family and this Community.

I am 70, have good days but 2 bad weeks whilst on HT, but I am fitter than I have been for years at this time - I am in Turkey on holiday this week and have just returned from a 5 mile walk.

Here are a couple of links that may help your hubbie with the radiotherapy and you both with the ED issue:

 What you wish you had known before starting Radiotherapy? 

 Sex and cancer - Let's talk 

I wish you both well moving forward - happy to help if you have any questions.

Best wishes - Brian.

This is a personal report, not a suggestion that it might necessarily affect everyone. I have had radiotherapy, and have been on hormone therapy for a year and a half.

Let's start with the radiotherapy. I had 37 sessions, and the worst bit was the travelling. For no reason at all I found that stressful. The were some side effects during the radiotherapy - loose stool, blood from the rectum (not much) - but were nothing to cause concern, and had disappeared within 12 days of the end of the course. All in all, not an apparent problem.

Everyone has some kind of side effect to hormone therapy, so I'm going to list mine which might help.

These are my main side effects:

1. Erectile dysfunction - kind of on and off, but off is complete. I haven’t monitored this , so I can't tell you the effects over time.
2. Loss of libido - complete. Possibly the reason why I am not concerned about the above. I should add that my wife also has a problem which made us decide that sex was probably something that we should think of in the past tense in any event. This has not caused any tension in our relationship, or any reaction in my mental health, at all.
3. Hot flushes - yes indeed. I get a number of what I think of as a "flushette" which causes me very little difficulty, and, about twice a day, really sweaty ones. I have decided that I don't care about this, and it strikes me that when I have them they are just evidence that the medication is doing something.
4. Fatigue - you specially mentioned this. I suffer from fatigue but not necessarily on a daily basis. I manage it by taking a short rest at lunchtime. I have followed the practice I used to adopt when tired whilst driving. Stop what I'm doing, drink a cup of coffee, and take a 10-20 minute doze. After that I am good to go.
   If for any reason I can't do that, I have run out of enthusiasm around 4:00 pm.
   It does get worse if I am force myself through the day for a couple of days. When I choose to push through it tends to get me later.
   All of this is manageable, though.
5. Brain fog - this seems to work with the fatigue. If I fail to listen to my body and relax, then by brain power turns to mush. Words disappear. I start doing things wrong. Things end up in the fridge that don't belong there. The same email gets written a couple of time. Eventually I just doze off, and that fixes it.
   I don't want to over-exaggerate this. I don't do anything dangerous, and would be quite safe to concentrate on things, though I would not choose to drive far. It is when the concentration is not needed that I have a problem. The best way I can describe it is that thoughts tend to overlap, so that one train of thought is not complete before the next one starts. This can cause all sorts of things, mostly funny.

Hello Louise. I think the combination of HT and RT will gradually become the period when fatigue will hit him the most. I went from walking up to 8 miles before starting treatment to having almost zero energy and having to turn around after 500 yards in the last week of RT. But the body recovers and maybe 2 weeks after RT has finished he will turn the corner.

Hormone therapy does seem to affect us very differently. Some people do struggle a bit with the hot flushes and other side effects. I went through a period around 8 months in when the hot flushes were very noticeable. 15 months in now and some days I don’t notice any. I do struggle to remember things at times, other times I’m OK. Broken sleep due to getting up for a leak several times in the night, doesn’t help. And my weight is slowly creeping up…! 

One of the best bits of advice the cancer specialist nurse gave me after completing RT was to listen to my body and only do things when I felt up to it, and rest when I could. I wasn’t very good at the latter though.

If you haven’t already you can read our individual stories and get a good picture of the different ways the treatment affects us all by clicking on our user names. 

Thanks Steve for taking the time to reply and write down your experiences which I will share with my husband. Its kind of reassuring to read that symptoms don’t seem to worsen with time (fingers crossed).