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Hormone Therapy before RT

User
Posted 02 May 2022 at 21:58

I have just been diagnosed and am retiring decide on treatment 

would appreciate any feedback from people who have gone through or are going through HT detailing all side effects you have/ experienced- concerned about depression in particular 

thanks

User
Posted 03 May 2022 at 07:50
Hi Joe I'm just about 2 months into HT. Not had depression but it has definitely effects my moods. The strongest change is,mainly waking, with over welling sense of sadness, for no particular reason. Occasionally this sense come at other times of the day. It passes almost as quickly as is come. Hot flushes are the main side effects I get mostly at night like night sweats. But again at other times of the day.

Many report being Fatigue.The best advice I've read is to increase your activity, in my case lots of walking It's certainly worked so far. I've just finished a 150k (about 95 mile) walk in Portugal with no problems not bad at 70.

Although my weight has remained the same I've put on some fat on my stomach. Have so far held on to my libido although dry ejaculation which is strange.

I realise I'm only 2 months in and things may get worse particularly when I have RT as well but so far not as bad as if feared. I

Good luck try to stay positive and as active as possible.

User
Posted 03 May 2022 at 08:27
My wife said that I was like a ticking bomb! I certainly became more emotional, and spent the 6 months on a very short fuse! I lost muscle tone & strength in my upper body, but light exercise with weights helped that.

User
Posted 03 May 2022 at 08:39
Loss of libido, mood swings and fatigue were my main ones. I had "brain fog" for the first couple of months - just couldn't think clearly - but that wore off. I've never slept better in my life, though: my head hit the pillow and I was out like a light!

All in all it wasn't too bad at all. Not something you'd choose to do, but not too awful given that it's all in a good cause. I did 18 months HT in total.

Hope that's of some help,

Chris

User
Posted 03 May 2022 at 10:26

Thanks again Chris-I guess the problem is knowing how each individual will react to HT

User
Posted 03 May 2022 at 10:30

Thanks for the feedback which is helpful 

can I ask if you were offered surgery as an alternative and if so what made you chose HT route?

congratulations on the walk by the way-I envy you as Portugal is one of my favourite holiday destinations-been visiting for over 20 years and live the people and place

good luck from here on in!

 

 

User
Posted 03 May 2022 at 10:33
Unfortunately how any individual will react to HT is an unknown. There are some side-effects which are almost universal, such as loss of libido and mood swings, but what else you get (or not) is pot luck. Les says above that he gets hot flushes, for example, but I didn't. The more extreme side-effects seem fortunately rare.

Very best wishes,

Chris

User
Posted 03 May 2022 at 10:57

Thanks for this Chris. This is proving a real dilemma for me to be honest and I wonder whether anyone has come across any statistics relating to the particular side-effects of depression mood swings etc regarding this?

User
Posted 03 May 2022 at 12:17

Was offered surgery but surgeon wouldn't guarantee saving nerves and said it was likely, given byopse showed that all 32 samples taken were cancerous, I would have to have RT anyway. I thought do I really want to go through a major op when there's an alternative which offers just as good outcome but with less possible side effects. Unfortunately head back home today it's been an amazing week weather great. 😎

User
Posted 03 May 2022 at 13:42
Joe,

I'd suggest asking your surgeon what he assesses the probability of subsequently requiring RT is. Overall about 1 in 3 men who have an RP go on to need RT, but the T3s probably make up a high portion of those 1 in 3. If you're more likely to go on to need RT than not, for me that would certainly be a significant factor in reaching a decision.

In my own case RT was strongly recommended because my PSA (32) was considered anomalously high for the G3+4 T2C biopsy result, so there was felt to be a high likelihood that there was undetectable spread into the lymph nodes, so I had the whole pelvic region irradiated by the RT.

All the best,

Chris

User
Posted 03 May 2022 at 14:02

Thanks Chris this makes a lot of sense and I will certainly be asking the surgeon tomorrow.

I think one of my biggest concerns is HT will affect my state of mind, moods etc. and how this could impact upon my relatively young family over a prolonged period of time.

User
Posted 03 May 2022 at 20:18

Joe, ask how long you would be on HT. Typically it's 6 months to 3 years, depending how high a risk your cancer is. Everyone does at least 3 months before RT, and if it was particularly bad, you could bail out at that point. However, most people manage OK.

Edited by member 03 May 2022 at 20:19  | Reason: Not specified

User
Posted 03 May 2022 at 20:53

Thanks Andy-I’ll ask tomorrow when I meet the oncologist 

I guess if it is particularly bad there must be additional help/treatment available.

just so difficult to make a call without definitive guidelines but I understand that is not possible as each individual reacts differently 

User
Posted 03 May 2022 at 22:44

It may be a bit strange for me to reply as my husband sadly died in 2020 but I think it is worth giving a positive view. My husband had a psa of 23 and gleason 7 & 8 with possible spread outside prostate tho small so surgery was ruled out. He had initial ht and then 33 sessions of rt including 1 to prevent breast growth. He was more emotional on the ht but apart from an occasional migraine and some fatigue, he coped very well and we continued to walk and do most activities although libido was affected. After the rt , the fatigue was more pronounced but he coped well with it and as long as he rested when tired, he did cope very well.

We had a period where he came off the ht and after about a year, libido came back and we had a couple of normal years where we continued to enjoy a normal married life. It was only when he had to go on zoladex that his libido went again and we settled for a loving relationship without sex. It did not stop us from doing most things we wanted to do including travelling abroad in a camper van.

Things did sadly progress but again he had 22 really good months on arberatitone with zoladex injections.  We lived a normal life and the main side effects were fatigue and it was harder to walk up hills but he did do a mountain climb with a friend, a personal goal achieved.

Many men find the rt and hormone treatment give them many years in spite of cancer.

I won't go further than that but the thing is not to despair. The initial treatments are well tested and successful. 

We thought that the diagnosis meant the end of a normal life but we accepted the advice given and did lots of things we wanted to do whilst learning to live with cancer. The treatments gave him almost 10 extra years after diagnosis.

 

 

 

User
Posted 03 May 2022 at 23:11

I am so grateful for you taking the time to reply Gilly - it is really appreciated and very informative!

Your comments certainly make me feel more positive about what is to come as it does all seem rather daunting for my wife and I at this moment.

Armed with the facts and advice you and others on this forum have given me I will now feel much better equipped for tomorrow when I meet the surgeon and oncologist for the first time - I will certainly have more informed questions for them to answer as I try to formulate our strategy moving forward.

Once again, I would very much like to thank you for your help and hope my wife and I get to enjoy our time together in the future just as you did with your husband

All the best

User
Posted 04 May 2022 at 00:27

Does anyone have any experience/research on Cyberknife as a possible treatment please?

User
Posted 04 May 2022 at 14:01

I hope so too.

Once we got over the initial shock of facing he had cancer with many tears and fears, we decided to carry on as a team and through his courage and family support we carried on enjoying things and living every day being together and doing whatever we could.

The oncology teams are always ready to answer questions and we found the specialist nurses were very helpful. Our oncologist was really good and we trusted his judgement on treatments.

I went to all the appointments, as it is easier for points not to be missed if there are two of you. This was every time up to the pandemic. Never be afraid to ask questions and voice concerns.

Always be optimistic, there are lots of men in this group who have had really long periods of good life after diagnosis. 

Good luck.

User
Posted 04 May 2022 at 15:03

Thanks Gilly!

User
Posted 04 May 2022 at 20:27

Hi, my experience with ADT hasn't been a good one but that's just me. I think it tends to exaggerate whatever was before ... I was probably a bit bipolar (or dipolar as we say in Wales!) And so that got really exaggerated...most guys aren't like that.

Like me you can always come off it....maybe go back later......

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 04 May 2022 at 22:04

Hi Joe i hope it went well today. I know how these sessions are stressful. But we (wife and i) found much encouragement once we had some treatment lined up to replace the bleak future we were fearing.

I was diagnosed with MPC in Nov 2019, spread to liver, several pelvic bones, rectum, bladder. I have had HT Zoladex from the get-go, an early course of CT Docetaxel, and after a year a round of RT. By PSA is down to 0.15 or so, but it was never that elevated anyway (5 at diagnosis) despite a Gleason of 9.

CT seemed to shrivel the mets on the liver. HT has slowed the rest down. RT reduced activity in the primary tumour.

All i would say is that i have so far been very lucky. Unlike I know some here have had bad experiences here. But none of the above treatments have been at all bad for me or my other half, or left me with too-nasty side effects. (OK, the HT gives me the most, including loss of sex drive and weight gain, hot flushes). What i mean is, i feel lucky so far, i feel fit. I get the occasional twinge of pain but really nothing to bother me. I walk 6 miles a day and swim most days. We are taking lots of holidays while i still feel great. I retired a year ago, aged 59.

All the symptoms (severe pain, constant weeing, pain in hips) i had pre-diagnosis have gone, at the moment--helped also by a TURP plus Solifenacin which means my bladder control is just dandy.

So, it might all be fine for a little while at least. . Try to be optimistic--sometimes the side effects are not too bad and the therapies help. 

Good luck!

User
Posted 04 May 2022 at 22:53

Thanks-yes stressful day but pretty positive all in all.

lots of thinking to do over next week or so to make a choice between surgery or RT but hopefully it will be a good call either way.

good to hear of your experiences which certainly encourages me for the future 

All the best to you and yours!

cheers

 
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