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Hormone Therapy or Quality of Life-

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User

Posted 01 Oct 2020 at 15:47

That's very interesting Chesire Chris!

User

Posted 01 Oct 2020 at 18:29

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

User

Posted 07 Oct 2020 at 14:42

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

User

Posted 07 Oct 2020 at 15:27

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

Posted 07 Oct 2020 at 15:33

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 | Reason: Wrong name

User

Posted 07 Oct 2020 at 19:56

Oncology appointments etc are never easy.

Hope all goes well tomorrow Misty.

Ido4

User

Posted 07 Oct 2020 at 22:04

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

User

Posted 07 Oct 2020 at 23:05

Originally Posted by: Online Community Member

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

Have you been to the dentist first?

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

User

Posted 08 Oct 2020 at 00:19

Good luck to you too Chris!

User

Posted 08 Oct 2020 at 00:22

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!!!

User

Posted 08 Oct 2020 at 22:49

Hi all. Well I'm afraid today's visit to the oncologist didn't go so well. I thought we were prepared for the worst case scenario, eg accepting the inevitability of HT at some point in the next year or so. But no, we were advised to start asap on bicalutimide for a month, adding in ADT injections after 2 weeks. The real shocker is he said ....for life! Not intermittently. And when my husband asked what life was likely to be without treatment (though not considering that now) he said maybe 3 years, and somewhere between 5 and 10 with treatment if the cancer responds.

We are completely floored! The only positive thing that he said...when I suggested it ....was that he thought yes we could get more radiotherapy to the pelvic lymph nodes generally. A PSMA scan was discussed but pretty much ruled out as we won't get one here in a timely manner and my husband felt another trip to Germany to not show up all the Micro Mets, would be a waste of money not to mention a huge effort with lockdown and flights largely grounded.

I am really interested to hear what you all think? Should we get a 2nd opinion about possibility of intermittent HT? Was he perhaps painting a worst case scenario??

Thankfully the Radiotherapist has offered to see us on Tuesday next and she will probably offer a clearer insight as to what we might do RT wise. We need a little time before starting HT but he gave us the impression we didnt have it! He said waiting wasnt really a good option given that my partner is only in his mid 50s.

We were going along with a PSADT of 13 months after biochemical recurrence until it jumped from 0.6 in Jan to 1.1 in April. Strangely my OH as never felt as well as he has since Jsnuary. Could this be a rise in Testosterone that has improved how he feels, but accelerated the PSA to a 6 month DT?

What do you think? Answers hugely appreciated.

Edited by member 08 Oct 2020 at 22:59 | Reason: Not specified

User

Posted 08 Oct 2020 at 23:07

Sorry to read this Misty. Did the oncologist explain why intermittent HT wasn’t offered?

Ido4

User

Posted 08 Oct 2020 at 23:11

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

User

Posted 09 Oct 2020 at 00:03

He said in view of my husbands age and the doubling time being 6 months that he wouldnt recommend it.

User

Posted 09 Oct 2020 at 00:09

Hi Lyn

Would somebody really die in less than 3 years? Why do you think that 3 years would be a tad optimistic?

My husband is not considering not having any treatment by the way but wanted to know just to know. He will have HT with the RT I imagine (if RT going ahead) but we do need a couple of weeks to get out heads around it.

Chemotherapy was mentioned too as a possibility but he didnt elaborate on that.

User

Posted 09 Oct 2020 at 01:23

Yes of course, we have had men on here who died within a year, even with HT.

A positive outlook is a good thing but I do wonder if you are underplaying how serious your situation is.

Research shows that early chemo can make the HT more effective for a longer time - certainly worth careful consideration if offered.

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

User

Posted 09 Oct 2020 at 08:03

I think Misty and her hubby are in a similar place to me. Deep down inside they don’t want to accept HT nor do either of them really want it ??

I agree it is pointless to talk of intermittent HT , you rarely recover from its side effects before you need it again. My Onco also said for life.

I remember when my psa was zooming but nothing could be found on any scans. My Onco said if I did nothing then I would get 1 to 2 yrs full quality of life , and then 3 to 5 yrs on treatment ( HT / Chemo ). As it is he was pretty on the button. I had a further 18 months before they saw anything at all. And now I’m just dithering around not able to make a choice , although now after RT to spine and hips I’m told I have a 50% chance of seeing a year out.

No guarantees with HT now as I’ve left it way too long. The only guarantee is that going on it will probably upset my knife edge existence and tip me right over the edge mentally. I need to make my decision today also via zoom. HT or Zometa to slow things up.

In all honesty though they have wanted me on HT for 3 yrs and I’ve thoroughly enjoyed those 3 yrs , so looking back I don’t regret it at all. I try not to look forward anymore. I met some old workmates the other day and not one of them could believe there was actually anything wrong with me. It’s the devil within munching it’s way through me.

Misty you need to decide just yes , or wait a while. But if he’s going to go on it then you may as well just do it straight away

Good luck

User

Posted 09 Oct 2020 at 15:03

Hi Misty, read your post this morning and I've been trying to formulate a reply, preferably without platitudes, since.

I was given no alternatives to HT. I was referred initially to urology and, although we all knew what the problem was, I hadn't actually been diagnosed. So a week or two before diagnosis I went on oral HT (can't remember what it was).

While I knew what most of the side effects could be, so there weren't any surprises, it was only afterwards that I could process what had gone into making the decision. Looking back I am happy with the decision I/we made.

What helped to make the decision? I had a catheter fitted and then, after 3 weeks, progressed (?) to self-catherisation; the prospect of cutting short the time I could spend with my wife; we had a second grandson who at that point was only 4 months old and I really wanted to have time to enjoy watching him grow; there were lots of things I still wanted to do and places I wanted to go. At 67 our sex life wasn't quite as active as it had been so that helped as well.

In my case, my quality of life has been affected more by the chemotherapy than by HT but both have helped me get to where I am today. My PSA is 1.9 (down from 562). After 9 months I was able to stop using catheters altogether (this was a BIG thing). Covid permitting we are able to go on holiday and out for meals and socialise with family and friends. We get to look after our grandson one day a week (that's enough! It's exhausting!)

Unfortunately though, it is your decision to make and its a balancing act. Good luck! Talk to eachother lots! Make the decision together.

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