Hello dj48, I'm sorry I don't have any practical advice for you, but I just want to wish you all the best with your treatment. My husband was recently diagnosed with prostate cancer and is trying to choose the best treatment. Not something I thought I'd ever experience, but he does know a few men who are living with it ,and maybe hearing their various stories will be useful.

It's good that you'll get the treatment you would have chosen. Good luck.

Thanks bluewombat. I  would have argued hard for my choice of treatment had I needed to  -  as long as one is an "expert patient" it's not difficult to get what one wants as long as not too expensive! Ensure that you are well read up on credible sources before discussing any issues.

Very best of luck to your husband.

Yes I could have gone without treatment in 2016 , but I was determined to stick to a promise I made to my wife.

When I first met her I knew she was the one for me, desperate being nearly 14: years older than me we courted for two years with me asking  to marry her before she'd say yes so I promised her I'd look after her when she got old she now has Alzheimer's and Parkinson's so needs plenty of care and its coming up to fifty years together the end of this year.

Being determined and positive is good for fighting most things especially cancer I've found ,as you say there are options like with anything we have good and bad moments but I'm determined I've made the right decision rather than dieing in 2016 and leaving my darling wife a widow and probably in a care home she's at home with me.

Take care, best wishes for the future.

Billy

All understandable and hugely admirable  -  my respect.

Best wishes to you both.

So, plan as I understand it and no doubt subject to variation according to changes as treatment progresses, 14 days of hormone medication, then injection, then 14 more days of medication. ERT some time after that.

Any clues as to how soon side effects of the hormone pills kick in? Or does it vary so enormously between individuals that impossible to predict?

Thanks, dj.

Hi most hormone therapy side effects cause hot flushes (there are meds to help) and weight increase you can get it off again just takes time.

Good points if you go on right pills you don't have to shave so often growth slows down alot.some people have mood swings.

Hope things go smoothly.

Billy

Thanks Billy. Yes, I am expecting those, just wondered WHEN!

Weight gain will be novel experience  -  I have wanted to get over 9 stone for last 55 years! For as long as can maintain my exercise regime of last 15 years (cycling -  6500 miles last year -  and walking) shouldn't be too bad. 

Get out and do my routine 20 miles now while I can!

Hi normally its around first month to third, but it can vary depending on strength,I know its not much help but afraid I'm just working from what I was like.

Best wishes for the future.

Billy

Thanks again, Billy. 

Just one more thing to look forward to (not) then!

dj 

So  far ..... had the 3 month version of the injection 10 days ago, 28 day tablets (Bicautamide) end in 3 days time. Consultation re next steps due 5 May. Once I know "plan" will be better placed to decide whether or not to continue.

Absolutely nil side effects yet. Still racking up 120 -  140 miles cycling a week. Nurse practitioner who gave the injection reckonedbeing "fit" helps with side-effects, but I am not sure any evidence for this.

Correction  -  only side-effect an improvement in urinary habits, sleeping much longer without having to wake for the loo.

For now, onward .....

Good to hear you've only had a positive effect so far, long may it continue.

My husband is going to have a mini-TURP soon, followed in due course by brachytherapy, which he seems to be suitable for.

He's very calm and positive, but I feel as though I just got on an escalator going in the wrong direction and I can't get off.

Good luck with your next step.

Thank you. Hope your husband proceeds as well as possible. Calm and positive (and for me at least a strong dose of realism) the only way. 

All of life is an escalator I'm afraid.

Good luck to you both.

Thank you. Hope your husband proceeds as well as possible. Calm and positive (and for me at least a strong dose of realism) the only way. 

All of life is an escalator I'm afraid.

Good luck to you both.

Update. 4 weeks post-tablets, 6 weeks since 1st injection, 2nd due 23 June. Had been preparing for ERT some time after that.

However, having received a mass of information in respect of ERT in advance of "planning" consultation on 5 June I am seriously reconsidering whether or not to have it.

It's difficult to find hard stats on risks of various side effects  -  what percentages are meant by "some" or "many"?!

More worryingly the demanded dietary regime even leading up to "planning" (presumably relating to defining and mapping the targets) will adversely effect my ability to take the exercise that keeps my copd at bay and also worsen my bowel function.

So, accept treatment that MAY prolong my life by preventing cancer spread but which will CERTAINLY shorten it by hastening the inevitable decrease in my ability to breathe? 

How to choose between the 2 is a tricky one! Stretching my powers of rational, logical, decision making to the limit.

I don't expect any "answers", just clarifiyimg my thinking by writing it down!

A bit miffed that consultant didn't really point out this dichotomy before seeking my agreement to treatment!

Had planning mri and scan. Still no meaningful adverse effects from hormone treatment. ERT scheduled to begin 7 July. Still wavering as to whether or not I shall proceed. 

Vote NOW!

OK, I did decide to proceed, started ERT last Thursday. Bad mistake. After only 4 (of 20) sessions my urinary problems, apparently not related to prostate, much worsened. I shall continue until my first "review" on day 8, but then probably quit.

Should have gone with my first reaction and chanced spread, hoped for maybe 6 months of an acceptable quality of life rather than a POSSIBILITY of a few years of life not worth living.

The "gut reaction" is sometimes the right one!

Well .... for various reasons I did continue. Day 19 of 20 today. "Review" yesterday less informative than I had expected  -  seems that success or otherwise in eradication cannot be judged for some months and then largely by psa levels. Hormone treatment to continue for 2 years. 

A "yes" to my "gone as well as could be expected?" the only reassurance!

Additional medication minimal effect on urinary problems, but then that not directly linked to the cancer tumours.

On the plus side little impact on general fitness. Set myself target of cycling at least 10 miles every day of treatment course (29 including weekends). 27/27  so far and  over 320 total so achieved  -  limited by time constraints of treatment slots rather than energy!

Guess I will only know if ert has "worked" when it doesn't! Remain unconvinced that treatment was worthwhile, but will now put it all to the back of my mind until tests etc in 3-4 months.

So, 18 months on from ERT .. .... little change for good or bad. Most recent of PSA tests in right direction. The elimination of testosterone has had inevitable effects on sex life, but we can cope with that. Lingering effects on bowels erratic and can be awkward, although difficult to distinguish from Covid medium term symptoms in my case.

On balance, the treatment was worth the effort. Still cycling, average over 100 per week for year despite some poor weeks while gf recovering from hip replacement!

Some very early symptoms of a new "site", a rarity which GPs refuse to recognise ..... but I shall pursue via the private sector. Once it's got in somewhere it'll always find a new home!

Onward and downward.

Just for completion, last of supposedly 6 mthly PSA tests (altho GP failed to hit the schedule). But near enough 3 year milestone and level an entirely satisfactory 0.26. Now annually for ever! 

Obviously expert ERT plus hormone treatment did the business as well as is possible.

Some urinary and bowel problems ( both intensifly tested) remain, but overall a "good result".

Onward and downward....

Dave.

Thanks Dave for the words of hope. I have urinary problems and a prostate check revealed a large Prostate and slight hardness on one side. I am having a PDA blood test next week.