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User
Posted 03 Jan 2024 at 16:34

I am in a similar situation, full results last week , psa 36.7 , Gleason 4+4 , T3b, I was told removal was not an option as too high risk and may cause spread , started on HM straight away and also to get steroids and injection plus also Abiratone , for 12 wks then a month of RT 

 

It’s all a bit overwhelming to be honest at 59 yrs and working fulltime

 

mental side effects more than meds at moment , not sure if I should consider time out from work 

 

or continue , work in admin , but can be taxing ?

 

any advice welcome , regards what to expect in lead up to RT

User
Posted 03 Jan 2024 at 20:29

It is only five years since I was treated, but in that time diagnostic scanning has improved markedly and also the way they do RT has improved. I have heard of people having HT for only 12 weeks prior to RT, but my diagnosis was similar to yours and it was a total of two years HT, so it is worth getting that checked at your next appointment. 

Your life insurance policy may pay out right now, based on the cancer diagnosis alone. Get that checked out straight away, it has happened to several on here.

I definitely don't think you should leave until you know what's what. It is quite possible in 12 months time you will be completely cured with no side effects and you'll be sitting at home twiddling your thumbs. Things may not go so well and you may need the private medical insurance.

 

Dave

User
Posted 03 Jan 2024 at 20:30
You need to know yourself. I was already retired when I had (salvage) HT and RT so the issue wasn't as loaded, but given the physical impact was fairly benign I would have found it psychologically hard stopping normal life for that period.

For example, I cycled to the appointments (about 5 miles each way with a couple of hills) for the first three weeks of RT. However by the fourth week of RT my energy was flagging, and it stayed that way for the next month or so. So you might want to let your work know about the issue and that if it affects you adversely you may eventually need a few weeks off. In the shorter term though, there is a risk you would just be kicking your heels feeling inadequate.

User
Posted 03 Jan 2024 at 17:43

Hi Jim, how long will you be on HT for in total?

My diagnosis was similar to yours. I had two years of HT some HDR brachy and three weeks of EBRT.

If you were close to retirement and already had plans of retiring early, then bringing it forward a year might make sense, otherwise my inclination is to say don't take too much time off.

Personally I didn't work during the EBRT the scheduling was disruptive to my day. The rest of the time I did work. There is no point in letting cancer take over your life, just get on with doing things as per normal as much as possible.

 

Dave

User
Posted 04 Jan 2024 at 01:43
People's experiences are wildly different! My husband had his RT every morning on the way to work - he never had a day off work, continued to play rugby on Saturdays and go to the gym every evening - the only impact it had on him was the need for a short nap at his desk a handful of times in the last couple of weeks of his treatment. We have members here who have worked full time throughout chemo treatment.

I think the sensible thing is to see how you go rather than decide to take time off work 'just in case'. At the moment, you don't really know how the HT will affect you, particularly as it can cause confusion / muddle for some men and the cumulative effect means it can get worse before it gets better. Some men are hit by dreadful fatigue within a couple of months. But many men are absolutely fine and carry on living a normal life, working, playing sport, etc.

I think you need to ask the oncologist again about the treatment plan as it appears you are going to be on HT for a long time - they don't give abiraterone to men who only need 12 weeks of hormones.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 03 Jan 2024 at 17:43

Hi Jim, how long will you be on HT for in total?

My diagnosis was similar to yours. I had two years of HT some HDR brachy and three weeks of EBRT.

If you were close to retirement and already had plans of retiring early, then bringing it forward a year might make sense, otherwise my inclination is to say don't take too much time off.

Personally I didn't work during the EBRT the scheduling was disruptive to my day. The rest of the time I did work. There is no point in letting cancer take over your life, just get on with doing things as per normal as much as possible.

 

Dave

User
Posted 03 Jan 2024 at 19:21

Thanks for reply , currently I just know HT for 12 weeks then RT for 4 weeks , not sure after that ,

my next key appointment is in 2 weeks might find out more then

 

As for work , ready for retirement just about , but not sure it makes sense to leave until I know what’s what , plus got private medical if needed and very good life insurance, I will not get independently after diagnosis 

User
Posted 03 Jan 2024 at 20:29

It is only five years since I was treated, but in that time diagnostic scanning has improved markedly and also the way they do RT has improved. I have heard of people having HT for only 12 weeks prior to RT, but my diagnosis was similar to yours and it was a total of two years HT, so it is worth getting that checked at your next appointment. 

Your life insurance policy may pay out right now, based on the cancer diagnosis alone. Get that checked out straight away, it has happened to several on here.

I definitely don't think you should leave until you know what's what. It is quite possible in 12 months time you will be completely cured with no side effects and you'll be sitting at home twiddling your thumbs. Things may not go so well and you may need the private medical insurance.

 

Dave

User
Posted 03 Jan 2024 at 20:30
You need to know yourself. I was already retired when I had (salvage) HT and RT so the issue wasn't as loaded, but given the physical impact was fairly benign I would have found it psychologically hard stopping normal life for that period.

For example, I cycled to the appointments (about 5 miles each way with a couple of hills) for the first three weeks of RT. However by the fourth week of RT my energy was flagging, and it stayed that way for the next month or so. So you might want to let your work know about the issue and that if it affects you adversely you may eventually need a few weeks off. In the shorter term though, there is a risk you would just be kicking your heels feeling inadequate.

User
Posted 03 Jan 2024 at 21:41

Hi Jim,

Similar PSA to me, mine was 36 at diagnosis although Gleason 7 rather than 8. Unless the thinking has changed I would imagine you would be on HT for at least 12 weeks prior to RT and then a lengthy period after it. I’ve been told I will be on it for for 3 years in total. I had 20 sessions of RT.

Everyone seems to be different when it comes to RT, it was a breeze for me but your days are taken up with getting to the hospital, doing the prep, waiting around and then the treatment itself which doesn’t take long, then of course the journey home. I’m retired so keeping working wasn’t an issue for me but I wouldn’t like to have worked during the treatment. A friend of mine who thought he could keep working during it, but stopped working half way through it as he was getting very tired.  You’re a good bit younger so maybe you would be ok. You’ve also got the side effects to deal with such as bowel and bladder urgency. These passed very quickly for me after treatment was complete.

My advice would be to keep as active and fit as possible, starting NOW and even during the RT. You might be better using your time during treatment to walk,go to the gym, or take part in any other kind of exercise. This I believe will help with any muscle loss and joint ache you might get whilst on HT.

All the best with your treatment.

Derek

User
Posted 03 Jan 2024 at 22:09

Cheers for the advice, it is much appreciated 

User
Posted 04 Jan 2024 at 01:43
People's experiences are wildly different! My husband had his RT every morning on the way to work - he never had a day off work, continued to play rugby on Saturdays and go to the gym every evening - the only impact it had on him was the need for a short nap at his desk a handful of times in the last couple of weeks of his treatment. We have members here who have worked full time throughout chemo treatment.

I think the sensible thing is to see how you go rather than decide to take time off work 'just in case'. At the moment, you don't really know how the HT will affect you, particularly as it can cause confusion / muddle for some men and the cumulative effect means it can get worse before it gets better. Some men are hit by dreadful fatigue within a couple of months. But many men are absolutely fine and carry on living a normal life, working, playing sport, etc.

I think you need to ask the oncologist again about the treatment plan as it appears you are going to be on HT for a long time - they don't give abiraterone to men who only need 12 weeks of hormones.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jan 2024 at 20:11

What is the frequency of PSA testing after you commence HT treatments , is there a set schedule pls , ahead of RT 

what about weight gain , can you diet while on HT and expect to lose weight  , is weight gain inevitable 

Edited by member 09 Jan 2024 at 20:15  | Reason: Not specified

User
Posted 20 Feb 2024 at 18:19

Has anyone developed Rhinitis ( clear water running from nose) it seems to have coincided with my first 3 month prostap injection 

it is constant and driving me nuts as is a dry sore throat and cough 

I saw this can be caused by hormone changes , I am also on Abiraterone , and steroids 

I started treatment in Dec 23 T3b 

 

Thought Rhinitis was petty to take to docs , but been constant for about a month

 

is this common , any advice 

 
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