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Hormone Therapy or Quality of Life-

User
Posted 22 Sep 2020 at 12:09

Great positive post to read Barbara, really encouraging xx

User
Posted 23 Sep 2020 at 15:57

Originally Posted by: Online Community Member

Hi Peter. Thank you for your reply. Do you mean if it's less than 2 in Octover the doubling time is MORE than 6 months?  It was weird how it jumped  Jan to Mar/April alright. We were thinking we had started RT in plenty of time and we got the 1.1 result from the test before he started, the day after he finished. We will have another result by the end of this week so that will be interesting. Do you know why oncologists delay HT to PSA of 10 or 20? 

Yes I did mean more than.  Doubling in less than 6 months is often a point when hormones will start.  With such a fluctuating rate of change you should perhaps wait until you are sure.

Also my understanding is they wait until it reaches a higher psa because it extends the time to when HT or whatever drug might not work any more. 

User
Posted 23 Sep 2020 at 16:41

At the minute, his doubling time is 7.24 months but it is not necessarily reliable because of the SRT in the middle. if it carries on at the current rate, it will reach 2.0 at the end of October and 5 next August / 10 in March 2022.

The sooner the man starts on HT the sooner it will stop working, the later he starts the higher the risk of significant spread - the skill of the onco is to identify the optimum time to introduce the hormones for that specific patient. As Peter says, the threshold is often at the point where the doubling rate falls to less than 6 months, rather than a specific PSA score.

Edited by member 23 Sep 2020 at 16:41  | Reason: italics

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

User
Posted 28 Sep 2020 at 22:05
Hi Misty

I'm nearing the end of a three-year HT regime and have a similar "mathsy" job to your partner so perhaps I can talk a little bit about how HT has affected things there. But'i'll start off with a general pros/cons.

The good things about HT has been the apparent PCa benefits - the PSA count is very low. As a result life expectancy is increased (nothing guaranteed of course)

The bad things are are a bit of a daunting list: reactions, "episodes", erectile dysfunction and loss of libido, effect on thought / mental work. A few of these could do with a bit more detail:

- I started on Prostap but because of reactions (unnerving swellings) I switched to Zoladex.

- what I think of as "episodes" (but others term hot-flushes) are a whole set of things usually including a flush. If I am out walking there can be a loss of balance/steadiness some minutes before the flush (I start drifting across the pavement!), and an episode gets preceeded by a feelings of tiredness and coldness (a bit like one is about to "come down with something") and depression. There's a heart rate increase that if I'm running can mean I have to stop as the rate can go too high (and can stay high for some time). At night I often get woken by whatever some minutes before the flush happens.

- As regards the mental part of my job: that's noticeable too - I can't think in quite the same way as I used to and am fairly sure it's HT and not age (61). The things that seems to be lacking are a lack of mental stamina / courageousness, I doesn't affect solving silly things like sudoku or crosswords. The consequence is I am less able to investigate complex issues that require the evaluation and synthesis of concepts and ideas. My solution to this has been .. to cheat ! ... I delegate much more now and am probably a better manager as a result (so there can be silver linings).

That might seem a depressing long list of "cons" but there is no contest for me. The decision for HT feels right both for me, my partner, and my family. In terms of my relationship with my partner there's been lots to deal with - our 39th wedding anniversary is soon (we were "living in sin" for 2 and half years before getting married - gosh, that phrase sounds so quaint now - so in total a very long time). I get scared for my wife and feel guilty about the situation we are in. This situation has perforce deepened our relationship in many ways, I guess that's par for the course here. Sex has been less frequent and less satisfying for both parties, but it's still there in some form. The loss of libido is strange - I look forward (over-optimistically ??) to it's return at some point. So, the "cons" I try to compartmentalise (not always successfully) - occasionally it can be very frustrating (e.g. I'm giving up on the half-marathon because I get too runs cut short by an "episode") but I try to accept it and concentrate on finding good stuff (e.g. do runs in nice places instead)

But it's in terms of life expectancy and the possibility of experiencing whatever is round the corner that I get a buzz from ... when I'm gone, I'm gone. Whilst I'm here I'm going to live in the moment, walk on the sunny side of the street and do some nice things. It doesn't have to be special, special ... simple things are often the best.

Good wishes to you and your partner. I hope you find the answer that is right for you.

User
Posted 28 Sep 2020 at 22:44

Thank you Stevie. That is a bit worrying as my husband's job involves very complicated calculations all the time!  However Adam said it didn't seem to affect him like that, though he gave up his work as a software engineer when on HT, so hard to know.

Have you had any issues with depression or lack of drive to succeed? Being the driving force behind a consultancy it would be difficult for my partner to experience this. However he can delegate a certain amount I'm sure. He is an optimistic soul generally and I am hoping he will deal with it well.

How did you do with side effects like weight gain and gynecomastia? The "episodes" sound a bit scary!

Have you or your wife had counselling? Together or separately? Not so sure my guy would go for that but he keeps telling me to start...I have no idea where to look! And I think I do need it....along with embracing Buddhism or something similar. I dearly wish I still had a bit of Karl Marx's "opium of the people"!!

User
Posted 29 Sep 2020 at 22:54

Originally Posted by: Online Community Member
This is affected by where the mets are (lymph nodes & soft organs may reduce life expectancy more than bone mets do)

 

Hi Lynn

I always read what you write very carefully - and do wonder if you are a doctor given that you seem to be so very expert on a range of prostate cancer issues.  Therefore,  I was surprised to read the above comment that you wrote since I had assumed that spread to the lymph nodes, although still incurable, would be 'less worse' that to bones.  Can you give me any  references/evidence base for your statement please?  Absolutely not a challenge to you - I wouldn't dare - but I declare an interest: I am 3 years post diagnosis and post RP with lymph node spread and, currently, no bone mets (recent PSMA scan) and undetectable levels of PSA.

As far as Misty's post is concerned, I find HT pretty tolerable.  Interestingly, I am currently living in a tropical country with a day time shade temperature of 30 degrees.  Perhaps paradoxically, I find the (frequent) hot flushes actually more bearable here than when I am in UK.  Perhaps I am already warm so a bit more sweat makes little difference for 5 minutes or so.  I also don't need to take clothes off since I have so few on in the first place!!!

Alan 

User
Posted 29 Sep 2020 at 23:24
She isn't a doctor she is way more important, she is the Matron!
User
Posted 30 Sep 2020 at 00:12

Good question Alan. I wondered about that too...and didn't like hearing it!! 

Interesting about hot flushes in a hot country! Do you suffer any of the other more upsetting side effects like gynecomastia or slightly foggy thinking, or just less sharp thinking? 

User
Posted 30 Sep 2020 at 01:19
I am really sorry; when I said 'lymph nodes' I was careless with my words - I was talking about M1 metastatic lymph involvement not N1 pelvic lymph involvement.

People don't actually die of prostate cancer in their prostate; it is the result of spreading disease - so with bone mets, there isn't anything medically that would bring someone's life to an end except that the increasing pain needs ever increasing pain relief and ultimately, semi-consciousness, unconsciousness until the person doesn't wake up. The brain also has a part to play - if it recognises that the end is coming, the desire to eat and drink disappears and as the person becomes dehydrated a natural pain relief kicks in.

Spread to soft organs such as liver / brain are obviously different to that - the mets stop the organ from working correctly. Spread to the lymphatic system can ultimately lead to lymphodema and in serious cases, heart failure, kidney failure, inability to fight infection (pneumonia), etc., so it is the impact of the mets that causes death rather than the increasing pain meds. On Stan's death certificate, it says the cause of death was cardiac and renal failure as a result of carcinoma of the prostate.

That's my understanding, anyway. Definitely not a doctor - just cared for too many people that I loved in end stage and had too many men in my life with PCa :-(

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

User
Posted 30 Sep 2020 at 01:23
Plus I did say 'may' ... it wouldn't be true in every case.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Sep 2020 at 14:01

Hi again Misty

Yes, I do have most of that stuff but...3 years on I am feeling a lot better than I was on diagnosis and especially after my RP when 25 lymph nodes were removed and 22 were infected!  The PSMA scan that followed surgery showed M1(a) disease and my top class urologist thought that there would be additional micro-cancers that even this fancy expensive scan would not pick up - hence don't bother with RT and go straight to HT.  Which I did.  That was a bleak moment for me and my wife.  But, as Einstein said, "Everything is relative".  Initially I wanted my wife to get to grips with those aspects of our life that she had left to me up until that point but she would have none of it and refused to discuss what she would do 'when I am gone".  So, all I can say is that it does get better, or at least it has done for us.  We have gone back to living a normal life doing what we did before, including trips to Malaysia and, last year, India.  I am nearly 75 so am now retired and therefore it may be less obvious to me if I have lost sharpness but I still feel pretty sharp intellectually.  I do have a maths degree but that was a very long time ago!  In a perverse way I am enjoying life probably more than I was doing just before diagnosis.  I was 72, had just finally stopped working (latterly operating as a part time consultant) and was just a little bored.  That certainly stopped.  Now I find I am enjoying every day of my reprieve.  I do hate the regular 3 monthly PSA test result and get very anxious in the week before the test is due but, the relief of a good PSA result is better than the news used to me that I have just landed the next job on the climb up the greasy pole!  I am a realist, however, and know that at some point my PSA will again start to rise - hence my anxiety as the test time approaches.  But it is why I get comfort from this Discussion Forum when I read that there are treatments I can have to prolong my life when my bog standard HT stops working effectively.  I hope at that point I will be able to come to terms with it but time will tell.

 

User
Posted 30 Sep 2020 at 16:09

That all sounds like a very good way of dealing with it and I might be like that myself if my husband wasnt so young....almost 20 years younger than you were when he was diagnosed ...and I was still in my 40s!

I do feel a little despondent (mega understatement!!) that he isn't going to be one of the ones who died with it rather than of it...and I'm very much thinking along the lines of what am I going to do when he is gone! A whole other ball game learning to deal with that, but I guess I'm feeling slightly less worse than last week, and as week after week go by with no catastrophes, I WILL learn.  

Yesterday when the PSA came back at 1.7, all I could think was if we can make it to next month without going all the way up to 2.2....we'll have pushed the doubling time out beyond 6 months...and at this stage even that little achievement will be positive!  Fingers crossed! 

User
Posted 30 Sep 2020 at 16:38

Hi Misty,

I am six months into HT, I was diagnosed with a psa 114 and secondary in my sternum, the only side effects I have are hot flushes. I was also informed by my oncologist to do bumbbells this also helps, i also have a very demanding job the only time I start to feel tired is when I sit down to rest but once I am up and back on my feet I have the second wind.

 

User
Posted 30 Sep 2020 at 17:36

Hi Misty

Of course you are right that I am 20 years older but, honestly, I feel exactly as I did in my 50s!  I hike, I swim, I read widely, I travel and I get annoyed with politicians!  And do not look and act like my Dad did at 74+ and am no more ready to die than I was in my 50s!  I do understand what you mean though!!!!  But I was hoping to re-assure you that taking hormone therapy after an RP -and mine couldn't be nerve sparing because of seminal vesticle involvement - is not the end of the world!  People are different and react differently - so much is obvious from the various posts.  For myself, since a young age I had a (very) vibrant sex life before my RP but there was no decision to be made - in a nanosecond my wife and I decided on my treatment plan since life and living were more important.  In the event although the RP followed by HT and now a very low testosterone level all mean that penetrative sex is not possible, I do get still sexually excited with my wife (and when I see a pretty girl!) and, with effort, can have a pleasant (but dry, obviously!) orgasm. Some guys report that they get turned off seeing their wife naked.  All I can say is that that is not my experience! 

One thing I did do which I think was helpful was I keep a diary about events, test results and, importantly, my feelings as I rode the roller coaster of treatment - initially expecting the radical RP to solve my problems but the post-op biopsy showing major lymph node involvement to PSMA scan which finally demonstrated to us that my cancer was incurable.  Now, after 3 years of hormone therapy and currently having much to enjoy in life I look back at the despair I felt and that makes all these tiresome side effects of HT very bearable.

Being a mathematician by trade, I did take notice of the data, naturally.  But frankly that does not help the individual make decisions.  In fact I was in Dublin staying with friends when my doctor phoned to say my PSA was 8.2 and that I should have an MRI 'just to put my mind at rest'!!!! The previous DRE had shown no enlargement.  Statistically, a PSA of 8.2 plus a negative DRE gave me only a 13% chance of having serious prostate cancer.  But of course, I was in that tiny percentage!  So now I am banking on the 28% 5 year Metastatic survival rate not applying in my case!!!  I deserve a bit of luck.

User
Posted 30 Sep 2020 at 17:44

I'd say you will definitely beat the 5 year mark...you are 3 years down the road already and feeling great! You sound like a wonderful positive person...my husband is too thank goodness and I am trying! 

Isnt it funny how as we get older we never feel like we are old? We are the same! Maybe some people dont feel like that but I like to hang around with the ones that do😁😁

User
Posted 30 Sep 2020 at 21:17

Misty,

It's certainly not true to say that HT always has dire side-effects. I was on HT for 18 months in association with my RT and, although not a barrel of laughs, neither was it a particularly ghastly experience. I was 56 when I started HT, so pretty much the same age as your husband.

I did experience fuzzy thinking when I started HT, but that cleared up after a month or so. I was able to continue my job as an IT consultant while on HT, and that certainly required logical thought processes. Other side-effects I experienced were some degree of fatigue, itchy skin (which a steroid cream cleared up), breast growth (which chest RT stopped) and of course the expected loss of libido (no loss of function, just of desire).

Given the unquestionable benefits of HT, I think personally that the benefits vastly outweigh the downsides of it. For me at least it was absolutely NOT the case that HT meant a bad quality of life!

Best wishes,

Chris

Edited by member 30 Sep 2020 at 21:19  | Reason: Not specified

User
Posted 30 Sep 2020 at 21:29
Great to hear Chris. Thanks for that.

Kind Regards

Misty

User
Posted 30 Sep 2020 at 21:52
Worth noting I believe that Cheshire Chris’ HT was Bicalutamide which is a completely different ball-game from injectable HT. Bicalutamide slightly lowers Testosterone but it’s main purpose is to ‘hide’ the testosterone from the cancer. There is still plenty of T around to satisfy all other functions mostly. Whereas injectable HT reduces a man to castrate level. I myself was on Bicalutamide 150mg per day for 11 months and very few side effects other than crippling fatigue for a month
User
Posted 01 Oct 2020 at 10:29

Hi Misty

I know what you mean about the opium of the people ... in some ways it would be nice to abandon oneself to such things but I can't do that :-)

Re depression and drive to succeed. "Yes" to depression, it has been sufficiently bad to need support.  This was Macmillan counselling service (to whom I'm forever grateful) and on my own (I actually "hid" it from my wife that I was doing it for the first month) .  I accessed the support via a drop in centre and just ... dropped-in.  Said "hi, can I have some counselling please" and it went from there - it took a little while to set up of course..  Another resource that might be of interest to you are the Maggies Centres (check out their websire) I hear many positive things about them and people travel a fair distance to go to them sometimes.  Drive to succeed is a harder one to be accurate about: the fact of PCa is distracting for sure, and because it is such a game-changer that has caused me some re-assessment anyway.  Given all that I do think my drive is different but not necessarily less - I have stopped worrying about the small stuff and am much more focussed on the big results.  Also, if this is any guide; in the summer just gone it was v. busy workwise - I worked more hours than for the past four or five years and didn't really notice it.

The other side effects you mention: weight gain hasn't been a problem as I went on a big health kick and am lots fitter than before (apps like C25K and MyFitnessPal plus social groups "the Fat Blokes Sports Club" as I call it to my wife, and a running group that is very inclusive. etc.), the gynecomastia got me a bit - trying on a new suit jacket got some horrid feedback (I blame the rubbish cut of modern suits) about my chest that eventually led to my doc getting me some RT to the "buds".  I wish I had done this earlier.

Lastly, you mentioned Bhuddhism.  That's not my thing but I did a lovely course in mindfulness that has been a great support.  I never thought that meditation would be for me but it's lovely.  It's not the same for me as counselling but in terms of finding calm and concentrating on the important stuff in a constructive way it has been great.

Good luck to you and your partner Misty

 

User
Posted 01 Oct 2020 at 13:28
As you rightly say, Chris, bicalutimide blocks the reception rather than the production of testosterone, but it blocks it for all the body's cells, not just cancer cells. That's why it's prescribed to men undergoing gender reassignment because it feminises the body by "hiding" the presence of testosterone.

My oncologist prescribes bicalutimide rather than injectable HT for all his prostate cancer patients because, in his view, it's just as effective but most men tolerate it better than the injections.

Best wishes,

Chris

 
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