Look, some men live for 10 years or more on HT and we have members on 15 years and counting. Losing mental agility is not an absolute - look up YorkHull who was an internationally renowned professor still leading research & speaking until just before his death. Other men here have also kept their high functioning & professional roles while on HT, including a surgeon. You don't know how long HT will last in each case but it is usually a number of years.
In contrast, not having HT means probably a much shorter life although again, no one can say how much shorter it will be. This is affected by where the mets are (lymph nodes & soft organs may reduce life expectancy more than bone mets do) and the hard fact is that it is not a comparison of life with HT side effects v current QOL but for a shorter time. Untreated prostate cancer tends to lead to all the same side effects and life impositions as HT does ...
- cancer in lymph nodes can cause lymphodema which limits mobility
- loss of libido is likely due to advancing cancer, pain, pain meds, loss of mobility, risk of fractures, depression
- fatigue - as the body tries to fight the cancer cells - we often see men here posting that they experienced fatigue before they were diagnosed and the fight response may be one of the reasons for this. Also, advanced cancer may mean restful sleep is difficult or conversely, the pain meds have to be so strong that the man sleeps more & more as time goes on
- pain - bone mets can cause debilitating pain
- incontinence - if the tumours are close to the urethra or infiltrate the bladder
- self catheterisation / permanent catheter - as above
- fractures - as the bone tumours grow
- depression - it's a vicious circle; can lead to lack of sleep, sleeping too much, loss of libido, fatigue
- bowel problems - an advancing tumour can lead to constipation, IBB type symptoms, blood loss, loss of appetite
I am not saying that he should have HT now - I am fairly sure that J would resist until it was absolutely forced on him - but I guess what I am saying is that you shouldn't make the choice through a rose coloured lens. He may be able to delay HT for a good while yet and the onco's skill will be in spotting the optimum point for starting it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
User
Hi, don’t come on this forum as much as I should, but fwiw here’s my experience. I was diagnosed with advanced PC in June last year and went on HT right away. I had a very frank talk with the medics and my wife and I decided this was the way to go. At diagnosis my PSA was 562 and it started falling immediately. I had/have mets in my bones but none in the lymph glands. These were the cause of quite a lot of back pain. I discovered this because within a week of starting oral HT the back pain had gone and it has never recurred. I went on to 3 monthly Zoladex implants and also started a course of chemo in September 2019. This lasted until December 2019 (final cycle on New Years Eve).
Currently I am generally feeling well and my PSAis static at around 2. However, I am suffering from aching joints (knees and shoulders). I have just had an X-ray on my knees to see what is causing this, but as it came on after finishing the steroids which I was taking to alleviate the chemo side effects, I think it may be that and the X-rays may show nothing. Also our sex life has pretty much disappeared. I am nearly 69and my wife is 67, but we were fairly active sexually. My libido has gone. I can get an erection with viagra but I don’t achieve orgasm. I can however help my wife get some satisfaction. We are learning to live with this. We are really good friends as well as husband and wife, which helps enormously.
Lots of hair fell out at first. Much of my beard landed on a plate at the Priest Hole in Ambleside, but the hair on my head and my beard and pubes have all grown back since finishing chemo. My chest hair has pretty much gone as has the hair on my back, but nobody misses that! I’ve had no mental problems with HT. I still work part time managing e commerce for a local company which keeps my brain active and gives me something to do when we are locked down.
it’s really difficult giving advice, but we think that the decisions we made were right for us. We still have a loving relationship and do loads of stuff together and with our family (COVID permitting), and I am able to watch my grandsons growing up.
The main problem I have at present is that I haven’t seen my oncologist since early January. The practice nurses who do my implant are great, and I realise that times are difficult but I’m feeling slightly abandoned by our local cancer hospital at Clatterbridge.
Keep safe and feel free to contact me if you want to chat. All the best,
User
Gosh Misty you seem to be in EXACTLY the same place as us. I’m 53. I’m sure you’ve read my story but if not click my picture and read my profile. I’m 5 yrs on from surgery and despite being offered SRT and hormone therapy etc I’ve refused it all based on QOL. I feel strongly about it too yet guilty as I have an only son aged 10. I’ve been making love really successfully for the last 2 1/2 yrs I guess and it means the world to us both. We make the most of every minute alone together. I’ve just progressed to a lot of spread in spine and ribs. My psa is circa 600. I’ve still said no to HT based on multiple reasons / medications / mental state etc. I’ve accepted 3 sessions of radiotherapy and had one so far. I simply don’t know what to do but believe I’ll only go with HT when I simply can’t function anymore. It will probably be too late then to do anything.
We read the other night that with advanced Pca and bone mets the 1 yr survival rate is only 47%. Yes very frightening, but the radiologist consultant said I had “ months to years “. That’s a very poor prognosis but I guess their best guess. Do I have months ( get the party started ) or do I have a couple of years.
All my best wishes to you and keep in touch with me ok
User
Oh Misty, I really feel for both of you.
It's true there is a long list of side effects from hormone therapy, but no one gets more than about 1/3rd of them, and some people even fewer. Many of them can be worked around to some degree (exercise should be considered mandatory, and makes a big difference to many of the side effects).
You can always come off hormone therapy any time, although that can take a while before effects reverse. If you are on it lifelong, you can often go on to intermittent hormone therapy, and most people on that spend longer off it than on it.
If your onco suggests waiting a while before starting it, I personally would be temped to try another PSMA PET scan just before you are about to start. Chances are slim of it finding something curable, but I would probably try for that chance anyway.
Wishing you all the best.
User
I don't know a great deal about this but it's often said on here that many oncologists wait until the psa has gone over 10 and as high as 20 before they start HT.
His psa has gone 0,6 in Nov, 0.6 in Jan, 1.1 in April, 1.3 in July, 1.5 in August. Strange that it jumped in Feb, Mar but since then it's slowed. 0.6 in Jan could be an error. If it's less than 2 in October the doubling is more (edited from less) than 6 months.
That doubling rate Jan to July might be why they want to start but if that doubling rate continues following say 1.5 to 3 to 6 to 12 it could be well over a year before he goes over 10, and possibly 2yrs before he would need to start hormones.
I wouldn't put anything above gaining extra time but we're all different.
I'm not a massive believer in lifestyle changes to increase chances of extending time but it depends what his lifestyle is and it would be something I'd look at.
Regards
Peter
Edited by member 23 Sep 2020 at 18:31
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User
"PCUK said that in advanced PCa you can live for 3 more years mostly on HT but the actual average globally is 10 months"
I think 10 months is the global average for a castrate resistant man, Chris? Abiraterone and enzalutimide increase it to 18 months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Originally Posted by: Online Community MemberHi 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
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
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
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.
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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
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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
I was on Zoladex for 3yrs(with abaritrerone, enzalutimide,prednisolone for nearly 2 yrs as part of trial) plus 37 RT sessions. I have to say I seemed to have most of the potential side effects of HT. They were certainly a nuisance but knowing what I know now, if I had a choice, I'd certainly choose the same. I'm now 64, treatment finished 2 years ago and still have some weight to lose (my 'normal' weight was circa 67kg went to max 84kg and I was fairly fit etc) still too tired but improving and PSA 0.4 I think (still have prostate). Testosterone back to near normal level, PSA checks every 6 months. Yes, as I say it's possible to get all the side effects but they do go or very nearly go completely. Things getting back to normal and still waiting to get to my "new normal". Best of lunch whatever happens.
Peter
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Hormone treatment does have some issues but without a doubt I would go for it, I get a range of side effects but to me they are a small price to pay for what it dose, my PSA started 184 in March this year is now according to my oncologist this morning is down to 1.9 don’t really know how good that is but I guess it is very good.
So don’t hesitate have the treatment.
Trevor
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Oncology appointments etc are never easy.
Hope all goes well tomorrow Misty.
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All my luck. I have a zoom appointment on Friday regarding Zometra start. Bone strengtheners. I hope you pick what is comfortable for you both x
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Have you been to the dentist first?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sorry to read this Misty. Did the oncologist explain why intermittent HT wasn’t offered?
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It is far too early to talk about IHT - it is not considered at the point when biochemical recurrence has been identified and once a man is considered incurable, oncologists don't usually set out with a plan of HT sometimes but not always.
IHT is usually discussed if and when the man's PSA has remained low and stable for two or three years, sometimes longer.
Three years without treatment sounds about right but possibly a tad optimistic. If he waited and then started HT some time in the three years, obviously he would hope for longer.
I can't imagine that anything drastic would happen if he didn't start the bical immediately but, on the other hand, even if the radiotherapist can offer anything, it will probably go hand in hand with HT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Gosh Misty you seem to be in EXACTLY the same place as us. I’m 53. I’m sure you’ve read my story but if not click my picture and read my profile. I’m 5 yrs on from surgery and despite being offered SRT and hormone therapy etc I’ve refused it all based on QOL. I feel strongly about it too yet guilty as I have an only son aged 10. I’ve been making love really successfully for the last 2 1/2 yrs I guess and it means the world to us both. We make the most of every minute alone together. I’ve just progressed to a lot of spread in spine and ribs. My psa is circa 600. I’ve still said no to HT based on multiple reasons / medications / mental state etc. I’ve accepted 3 sessions of radiotherapy and had one so far. I simply don’t know what to do but believe I’ll only go with HT when I simply can’t function anymore. It will probably be too late then to do anything.
We read the other night that with advanced Pca and bone mets the 1 yr survival rate is only 47%. Yes very frightening, but the radiologist consultant said I had “ months to years “. That’s a very poor prognosis but I guess their best guess. Do I have months ( get the party started ) or do I have a couple of years.
All my best wishes to you and keep in touch with me ok
User
Oh Misty, I really feel for both of you.
It's true there is a long list of side effects from hormone therapy, but no one gets more than about 1/3rd of them, and some people even fewer. Many of them can be worked around to some degree (exercise should be considered mandatory, and makes a big difference to many of the side effects).
You can always come off hormone therapy any time, although that can take a while before effects reverse. If you are on it lifelong, you can often go on to intermittent hormone therapy, and most people on that spend longer off it than on it.
If your onco suggests waiting a while before starting it, I personally would be temped to try another PSMA PET scan just before you are about to start. Chances are slim of it finding something curable, but I would probably try for that chance anyway.
Wishing you all the best.
User
Hi Chris. Thanks for your reply. We have talked many times before! I'm sorry to hear things are getting so bad. I know your physical relationship is very important to you but that would not be the main reason for us not to go the HT route. I am with my husband since I was a teenager myself...he is my absolute soul mate and I realise we are so lucky to have had that for 34 years ...so hopefully we can cope with a bit of enforced celibacy😏😏.
However If NOT having HT means a rapid decline...then he won't be going there...if having it means his intellectual edge and his energy will be destroyed well maybe he wont be going there either (damned either way!) But maybe some people on here who have had HT can help regarding those worries?
User
Hi Andy
The oncology team have ruled out another PSMA scan at this point though the Radiotherapist had been considering it. However with Dublin on lockdown and the one PSMA scanner we have facing a massive waiting list, our only option would be to go to Heidelberg for the 3rd time. Again they feel too much time at stake. However I will certainly ask that question when we have our meeting. I think the rapid increase from 0.6 in Jan to 1.5 or more now despite SBRT is driving their decision.
Art (Alan) has had HT for 19 years and has a very informative post. I hope he will see this...he mentioned exercise too...my husband wants to know does playing the guitar count??😁😁😏😏
So hard to keep the spirits up at the moment😥😥
User
My Onco has never considered further PSMA with my situation. Because of bone mets and lymph mets there is no cure. I asked even when I just had the two lymph’s and two marks on my spine but he said no to targeted RT. I’m guessing because you’re just chasing a constant moving progress. When I went for RT the other week they said I had 4 spine tumours , but when they did the planning CT it was now 6 tumours just six weeks from last scans.
User
This cancer is a sneaky little beast, cropping up here and there with no warning. We opted for extra time together so my oh did have ht. Everyone seems to have treatments in different orders. All I can say is that we were older, though still enjoyed each other, but eventually the libido went and the desire altogether as well as total Ed. It was tough but we had three years of a celibate life and our love was just as strong but we had to accept that the friendship was the most important.
His only side effect then was fatigue nd leg ache but obviously in the end there were no more options for us but I am thankful we had 10 years we thought we would not have.
Looking back would we have changed things? Maybe, but we didn't seem to have any alternatives as we plodded along the treatment path. I think my oh felt he wasn't "much of a man" at times but our love was very strong and we overcame everything until his body couldn't cope with any more.
If your sex life is very important and you feel you could not accept celibacy or didn't want to resort to pumps and injections etc then I would
have a very frank talk with your doctors. We did use viagra which was fairly useful.
User
Gilly thank you. It's so kind of you to be still on here supporting people considering your recent loss. You sound like a wonderful couple. Do you think you would have had less time without the HT? I do worry about my husbands frame of mind if he has HT. He grew a man boob on one side as his T went to less than 4 after his RP. He absolutely hated and still hates it. It has stopped growing as his T rose a little again but it's the one thing that really depresses him still...apart from the current diagnosis. We have already had 4 years of Cialis and pumps...we only ever get to make love when away from home as he is too self conscious in our semi d ...but his worry is that he will lose all interest and not even be able to pretend he is even with props!
However like you and your lovely husband we are blessed to have a very strong and secure relationship. We are two halves of the one coin...that's what makes me so afraid of losing him and bring left on my own. I know it isnt easy, my own father died when I was 20 and my mother was desolate for years. I dont want to be like her but I fear I will be.
User
Look, some men live for 10 years or more on HT and we have members on 15 years and counting. Losing mental agility is not an absolute - look up YorkHull who was an internationally renowned professor still leading research & speaking until just before his death. Other men here have also kept their high functioning & professional roles while on HT, including a surgeon. You don't know how long HT will last in each case but it is usually a number of years.
In contrast, not having HT means probably a much shorter life although again, no one can say how much shorter it will be. This is affected by where the mets are (lymph nodes & soft organs may reduce life expectancy more than bone mets do) and the hard fact is that it is not a comparison of life with HT side effects v current QOL but for a shorter time. Untreated prostate cancer tends to lead to all the same side effects and life impositions as HT does ...
- cancer in lymph nodes can cause lymphodema which limits mobility
- loss of libido is likely due to advancing cancer, pain, pain meds, loss of mobility, risk of fractures, depression
- fatigue - as the body tries to fight the cancer cells - we often see men here posting that they experienced fatigue before they were diagnosed and the fight response may be one of the reasons for this. Also, advanced cancer may mean restful sleep is difficult or conversely, the pain meds have to be so strong that the man sleeps more & more as time goes on
- pain - bone mets can cause debilitating pain
- incontinence - if the tumours are close to the urethra or infiltrate the bladder
- self catheterisation / permanent catheter - as above
- fractures - as the bone tumours grow
- depression - it's a vicious circle; can lead to lack of sleep, sleeping too much, loss of libido, fatigue
- bowel problems - an advancing tumour can lead to constipation, IBB type symptoms, blood loss, loss of appetite
I am not saying that he should have HT now - I am fairly sure that J would resist until it was absolutely forced on him - but I guess what I am saying is that you shouldn't make the choice through a rose coloured lens. He may be able to delay HT for a good while yet and the onco's skill will be in spotting the optimum point for starting it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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The sentence that jumps out at me there is that lymph node cancer may reduce life expectancy more than bone Mets do....that's terrible...his cancer is in the lymph nodes.
I found the first paragraph hopeful till I got to that bit...not sure I was ready today for a list of all the awfulness connected with PCa 😥😥
User
Hi Misty
I've been on HT for 2 years since diagnosis.
Main problems for me are weight gain, total loss of libido and the dreaded hot flushes.
I'm trying to stay fit but even walking 99 miles in 6 days along the Hadrian's Wall path last month I put on a couple of pounds.
Mentally I'm a lot stronger than a year ago and experience no fatigue or memory problems.
Got another 3 monthly jab next week.
John
User
Thanks John. Wow that was some walk...well done! Glad to hear you are not experiencing fatigue or memory problems.
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Sorry Misty - you asked how it progresses. I can delete it if you prefer? Important to note the word 'may' though & hold that in your head - it is not a certainty.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I don't know a great deal about this but it's often said on here that many oncologists wait until the psa has gone over 10 and as high as 20 before they start HT.
His psa has gone 0,6 in Nov, 0.6 in Jan, 1.1 in April, 1.3 in July, 1.5 in August. Strange that it jumped in Feb, Mar but since then it's slowed. 0.6 in Jan could be an error. If it's less than 2 in October the doubling is more (edited from less) than 6 months.
That doubling rate Jan to July might be why they want to start but if that doubling rate continues following say 1.5 to 3 to 6 to 12 it could be well over a year before he goes over 10, and possibly 2yrs before he would need to start hormones.
I wouldn't put anything above gaining extra time but we're all different.
I'm not a massive believer in lifestyle changes to increase chances of extending time but it depends what his lifestyle is and it would be something I'd look at.
Regards
Peter
Edited by member 23 Sep 2020 at 18:31
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I guess I did Lyn! No need to delete...I can't "unsee" it and my beloved won't see it as he chooses not to research and doesn't read these posts...I pass on the edited version to him!
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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?
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My guy had 32 sessions of radiotherapy plus one to the chest area which stopped the man boobs from developing. He was on ht intermittently over several years and did well really. Eventually he had arberatitone which helped him tremendously for nearly two years. Sadly the psa started to go up and he had to come off it and start the chemotherapy . Again he was doing ok but a two week stay in hospital following kidney problems left him weak and mentally scarred after the isolation. Like you say when you are two halves of a coin, being apart is debilitating and the Covid situation has not helped people suffering from cancer at all.
I would try not to dwell on what might happen because it might not. Everyone is different. Had I read Lyn's message when G was going through his worst times, I would have been less shocked by what did happen.
We never quite had a proper explanation as to why he could no longer urinate and he adapted to self catheterisation in the stoic way he faced everything.
The thing is, you have to learn to live every day to the best of your ability and adapt as well as you can. Don't despair and keep talking openly to each other all the time.
We found that holding hands and hugging let us show our love for one another and was enough. Of course it was very sad that our love life ended but in the end it made us even closer in some ways.
I wish you luck and lots of love together in the future.
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I beg to differ but when speaking to my consultant radiologist two weeks ago he said that the bone cancer would see me off far more quickly than lymph spread , despite having multiple sites now. He said no major tissues were involved. He said he couldn’t give a proper prognosis.
At the end of the day we all pick our own mountain to die on. Others opinions are welcome but ultimately don’t change our decision I reckon. My gut feeling has never changed.
Ultimately you just postpone exactly the same death but in reality with more pain and suffering and blue lights.
PCUK said that in advanced PCa you can live for 3 more years mostly on HT but the actual average globally is 10 months
Edited by member 21 Sep 2020 at 22:17
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"PCUK said that in advanced PCa you can live for 3 more years mostly on HT but the actual average globally is 10 months"
I think 10 months is the global average for a castrate resistant man, Chris? Abiraterone and enzalutimide increase it to 18 months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi , As Lynn has said some men are still here 15 years after diagnosis, Tony is one of them, he was diagnosed in Dec 2005, He had RT and HT, the hormones he was on intermittently until about 3 years ago and is now on them permanently, he has had chemo and more RT to the aortic lympth nodes and is also now on abiriterone. he was 61 when he went to his Dr and will be 76 next in Nov, he is Gleason 9 T3B spread to seminals. Good luck with what you decide, Tony has never regretted any of his choices of treatment.
regards Barbara x
Edited by member 22 Sep 2020 at 13:58
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Great positive post to read Barbara, really encouraging xx
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Originally Posted by: Online Community MemberHi 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.
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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
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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.
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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"!!
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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
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She isn't a doctor she is way more important, she is the Matron!
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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?
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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
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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
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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.
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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!
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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.
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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.
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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😁😁
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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
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Great to hear Chris. Thanks for that.
Kind Regards
Misty
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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
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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
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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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That's very interesting Chesire Chris!
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I was on Zoladex for 3yrs(with abaritrerone, enzalutimide,prednisolone for nearly 2 yrs as part of trial) plus 37 RT sessions. I have to say I seemed to have most of the potential side effects of HT. They were certainly a nuisance but knowing what I know now, if I had a choice, I'd certainly choose the same. I'm now 64, treatment finished 2 years ago and still have some weight to lose (my 'normal' weight was circa 67kg went to max 84kg and I was fairly fit etc) still too tired but improving and PSA 0.4 I think (still have prostate). Testosterone back to near normal level, PSA checks every 6 months. Yes, as I say it's possible to get all the side effects but they do go or very nearly go completely. Things getting back to normal and still waiting to get to my "new normal". Best of lunch whatever happens.
Peter
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Hormone treatment does have some issues but without a doubt I would go for it, I get a range of side effects but to me they are a small price to pay for what it dose, my PSA started 184 in March this year is now according to my oncologist this morning is down to 1.9 don’t really know how good that is but I guess it is very good.
So don’t hesitate have the treatment.
Trevor
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Hi, don’t come on this forum as much as I should, but fwiw here’s my experience. I was diagnosed with advanced PC in June last year and went on HT right away. I had a very frank talk with the medics and my wife and I decided this was the way to go. At diagnosis my PSA was 562 and it started falling immediately. I had/have mets in my bones but none in the lymph glands. These were the cause of quite a lot of back pain. I discovered this because within a week of starting oral HT the back pain had gone and it has never recurred. I went on to 3 monthly Zoladex implants and also started a course of chemo in September 2019. This lasted until December 2019 (final cycle on New Years Eve).
Currently I am generally feeling well and my PSAis static at around 2. However, I am suffering from aching joints (knees and shoulders). I have just had an X-ray on my knees to see what is causing this, but as it came on after finishing the steroids which I was taking to alleviate the chemo side effects, I think it may be that and the X-rays may show nothing. Also our sex life has pretty much disappeared. I am nearly 69and my wife is 67, but we were fairly active sexually. My libido has gone. I can get an erection with viagra but I don’t achieve orgasm. I can however help my wife get some satisfaction. We are learning to live with this. We are really good friends as well as husband and wife, which helps enormously.
Lots of hair fell out at first. Much of my beard landed on a plate at the Priest Hole in Ambleside, but the hair on my head and my beard and pubes have all grown back since finishing chemo. My chest hair has pretty much gone as has the hair on my back, but nobody misses that! I’ve had no mental problems with HT. I still work part time managing e commerce for a local company which keeps my brain active and gives me something to do when we are locked down.
it’s really difficult giving advice, but we think that the decisions we made were right for us. We still have a loving relationship and do loads of stuff together and with our family (COVID permitting), and I am able to watch my grandsons growing up.
The main problem I have at present is that I haven’t seen my oncologist since early January. The practice nurses who do my implant are great, and I realise that times are difficult but I’m feeling slightly abandoned by our local cancer hospital at Clatterbridge.
Keep safe and feel free to contact me if you want to chat. All the best,
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Oct 7th 2020
Steviep, Peterco, Southcourtred and Trevor thanks for your posts over last few days, and obviously to every one else too!
Tomorrow morning at 11.15 we wilmeet the Oncologist. I'm sure he will recommend HT and we will go off to think about it....or maybe he will delay it for a while. PSA now 1.7 (September reading)
I was so fed up being in limbo that I took matters into my own hands on Monday, the start of 3rd week of no contact (since the phone call with Radiotherapist), and rang her private secretary. Within half an hour the secretary of the oncologist had contacted my husband with the appt for tomorrow! The clinical nurse practitioner in the RT dept rang me back later and said we could both meet with the Radiotherapy conslt after we had met with the guy tomorrow, if we wanted to discuss anything. So that's a start.
We are going to ask about another PSMA scan and possible further SBRT in conjunction with whatever oncologist suggests anyway. We are also going to ask if he thinks HT will be as effective as it should be in somebody who's T was very low to begin with. I guess the answers will help determine our next moves along with his recommendation obviously.
We will also ask about breast tissue development and ways of stopping this or dealing with it and I HOPE he stresses the benefits of exercise and possibly losing weight before HT starts because my 5'11 husband is probably around 100kg to start with...when he should be about 80!!
Not looking forward to it at all but hopefully things will look up afterwards..wish us luck!!
Misty xxx
Edited by member 07 Oct 2020 at 15:37
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Oncology appointments etc are never easy.
Hope all goes well tomorrow Misty.
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All my luck. I have a zoom appointment on Friday regarding Zometra start. Bone strengtheners. I hope you pick what is comfortable for you both x
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Have you been to the dentist first?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good luck to you too Chris!
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Thank you. Fingers crossed. I ve heard the consultant isn't very chatty but if he's good at his job, and approachable I should be ok. I say I because it will be me who will be asking most of the questions I expect! "Ah sure we'll see what he has to say" was the extent of the pre-visit discussion here tonight also! Engineers!!!