Hormone Therapy or Quality of Life-

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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