Trying to get to retirement before HT - Prostate Cancer N...

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Trying to get to retirement before HT

CJ1958 profile image
30 Replies

Hi All,

I'm currently 65 years old. My PSA level before the biopsy was 8.1, and my Gleason Score was 4+4. Fortunately, there are no signs of metastases. Although my treatment hasn't started yet, it's likely that I'll begin radiation therapy in early December. I'm currently overseas and won't return until late November, and my doctor didn't express any concern about this delay.

Here's the challenge I'm facing: I'm hoping to avoid Hormone Therapy until I retire at the end of June 2024. My profession demands mental sharpness, and I often travel. Based on my research, Hormone Therapy could negatively affect my cognitive abilities, which is something I can't afford if it is at all possible.

Given the wealth of knowledge and expertise available on this forum, I'm seeking suggestions to achieve my goal. One idea I've considered (though it's just my personal thought) is to proceed with the radiation therapy as planned (which involves 4 weeks of treatment with 5 sessions per week). Additionally, I'm contemplating the possibility of taking a low-dose chemotherapy pill with minimal side effects. This might help manage the prostate cancer and complement the radiation therapy until I'm ready for the more intensive Hormone Therapy next June (the big guns!). I'm unsure if such a pill even exists for prostate cancer, but I know they are available for other cancer types.

I acknowledge that my thinking may not be entirely on target, in fact it may be completely off target! - but I'm open to any experiences or advice that others might be willing to share.

Your insights would be greatly appreciated.

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CJ1958
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30 Replies
Justfor_ profile image
Justfor_

In the US docs are obsessed with Lupronides. In Europe anti-androgens like 1st gen Bicalutamide monotherapies are still on the table. You can take it until your radical treatment after your retirement. Not only it won't reduce your cognitive performance but it will probably enhance it as your Testosterone will go up instead of down. This is my personal experience. Combine ii with Tamoxifen to counteract gynaecomastia and you will be good to go.

Tall_Allen profile image
Tall_Allen

There is no reason why your mental acuity should suffer with short-term use. Even in men taking it for life, it is a rare effect.

maley2711 profile image
maley2711

TA's blog article mentioned studies ahowing little harm in one year treatment delay...even for high risk, surprisingly.

Mike58 profile image
Mike58 in reply to maley2711

That interests me because I’ve heard differing views about this. Covid showed many men who had to wait over 12 months to get treatment hardly changed in their diagnosis. But then you hear of men who said they left it too long and now regret it. I guess no one knows the day that PC decides to escape into other areas. If we knew when that was going to happen we would all probably withhold treatment until close to that date.

maley2711 profile image
maley2711 in reply to Mike58

Yes, that's the problem...when will it escape. Still, the studies no large population difference in outcomes from immediate or somewhat delayed treatment. It sucks when you are having a great/good QOL for a man of your age, and then deciding to accept a treatment that MAY cause immediate deterioration in QOL. Many researchers talk about this in articles they write.......they are trying to find ways to better guess who might not need the most aggressive treatment..... there will never be certainty IMHO.....hoefully a breakthru for future men!!!

CJ1958 profile image
CJ1958 in reply to maley2711

Yep, sometimes you feel like a guinee pig with all the "new and latest" treatments and trials - but I guess until the magic pill is finally developed, then we are just on that waiting line, hoping to be around when the cure comes through

Vynbal profile image
Vynbal

Another option to consider is starting the ADT with Orgovyx. If you start to feel brain fog as a side effect, you can stop it and your T will return quickly. As TA said, you are unlikely to be affected in the first 6 months, but knowing that stopping temporarily is an option may give you some peace of mind. TA has often advised against stopping ADT early (selecting for the most resistant strains of PCa). In your case it would be a hiatus of at most 7 months, since you would resume ADT in July. I don't know how much risk this hiatus would add.

Horse12888 profile image
Horse12888

Let me add here that some men experience very mild SEs from ADT. (I wasn't one of them, but they DO exist.)

Also, now with Orgovyz, it's possible to try ADT on for size and stop if the SEs are intolerable; you'll get your T back in a matter of a few weeks, rather than several months.

Another route to try here as well of high-dose transdermal estradiol (tE2) as a substitute for GnRH drugs. It's not common in the U.S., though it's the SoC elsewhere.

Baldylocks profile image
Baldylocks

Why is HT on the table at this point? I didn’t get from from reading here any indication that you are a candidate for it at this point?

CJ1958 profile image
CJ1958 in reply to Baldylocks

My Radiologist said that IMRT and 2 x 3 monthly doses of HT is a standard to go with. I'm going to push also for HDR Brachytherapy as this seems like the way to go. Still unsure if the HT will still be a standard procedure. I really would like to bypass HT but it appears as though this is required to put the cream on the cake in the treatment. We will see what happens once speak with him again.

London441 profile image
London441

You will want to have the hormone therapy in conjunction with radiation to optimize it. Forget the chemo. Orgovyx is an option, but if I were you I’d just start it in December as planned.

The reason: side effects, including any cognitive issues, are not at all likely to be a factor in only 6 months time. By then you’ll be retired.

No matter the path you choose, at every stage, the more you exercise the less your sides will be. By far.

CJ1958 profile image
CJ1958 in reply to London441

Are you saying that if i have the 3 monthly HT injection in December and then another in March next year that the real effects wont kick in until June / July?

London441 profile image
London441 in reply to CJ1958

Everyone’s different, but basically yes.. No guarantees of course. How much do you exercise and what kind?

Mike58 profile image
Mike58 in reply to London441

Only walking. Any other suggestions?

London441 profile image
London441 in reply to Mike58

Walking is good. Walking fast and far enough to sweat and get into a training zone of 65-80% of your maximum heart rate is best. Of course running, cycling, swimming rowing etc are generally easier for this.

That said, weight training is what you need to add the most. ‘Hormone Therapy’ is code for near total testosterone suppression. This will waste your muscles noticeably and in a relatively short time unless you intervene.

This muscle wasting is also the driver of the fatigue these drugs are known for, but they also slow your metabolism, create or exacerbate insulin resistance and the brain fog that you’re concerned about.

Visceral fat (belly) also a problem. Combined with the muscle loss this is called sarcopenia. You don’t want it.

If you do both types of exercise you have a excellent chance to pretty much sail through. The more sedentary you are the more so you’ll become. It’s miserable, and hard to overcome later at our advanced age.

Get a trainer if you can afford it. Great luck to you!

CJ1958 profile image
CJ1958 in reply to London441

Thanks for these tips. I'll try to get motivated to start getting myself a bit fitter than i am - I guess I cant have any better motivation than having PC that i want to get rid of!!

Derf4223 profile image
Derf4223

You said nothing about your PSA doubling time. If I were you I'd get it checked every 2-3 months prior to treatment commencement. Also, it would be nice in an ideal world to get a PSMA PET/CT scan, and in fact you could get all the staging scans and then have an informed idea of the risk of waiting a year to start ADT. Without those you are a sitting duck for the Hydra that never waits.

CJ1958 profile image
CJ1958 in reply to Derf4223

Ok, so my PSA readings were as follows; Oct 2019 2.3, March 2021 3.2, Feb 2023 6 & the final one was June 2023 and it was 8.1. Then I had the Biopsy in August, 42 core samples, 10 were GS 4+4. PSMA scan in Sept - Prostate volume 75cc, Nil metastases.

Not sure how all the above is to be interpreted but Urologist wants to do RP but the RO wants to do RT with HT.

I'm leaning to doing RT but the HT worries me after reading about how it can affect QOL and also how it can cause heart & bone issues.

Such a difficult decision to make.

Also the urologist said that it is pointless taking another PSA test because after a biopsy the level will be very high for a few months???? Is that right?

OldVTGuy profile image
OldVTGuy

I’ve been on Lupron 9 months. No brain fog whatsoever. More noticeable is the physical changes like belly fat and muscle loss. I definitely could have been working through it.

Mike58 profile image
Mike58

Ok - thanks for this. Can you tell me how long before your first injection that you noticed symptoms developing? Some have suggested it takes 6 months b4 the real side effects kick in. Until then you might not feel too much different.

OldVTGuy profile image
OldVTGuy in reply to Mike58

The first three months not much was noticeable except for the occasional hot flash, but during this time I was focused on IMRT side effects.

j-o-h-n profile image
j-o-h-n

HT is the abbreviation for Hormone Therapy ............... as part of your treatment you'll be able to mentally solve TV Guide's crossword puzzles until you're at least 92 YOA. YOA is abbreviation for Years Of Age. BTWNTW abbreviation for By The Way Not To Worry.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/09/2023 6:34 PM DST

CJ1958 profile image
CJ1958 in reply to j-o-h-n

Love your positive humor John and wouldnt it be grand IWDMIT 92 IWDMIT is an abbreviation for If We Did Make It To ...... 😜

conbio profile image
conbio

Was on Lupron for 18 months. No brain function issues at all. In fact I've never heard of that as a side effect. But you better start a serious weight lifting regime or you will lose significant muscle mass.

CJ1958 profile image
CJ1958 in reply to conbio

So, I'm struggling as to how weight lifting assists with muscle loss? If the HT is going to reduce muscle to fat - then producing more muscle will only produce more fat? How does this all work?

conbio profile image
conbio in reply to CJ1958

I'm not a physiologist, but I'm pretty active. 67 yo, G4-5, 18 months Lupron, started 3 months before EBRT (24 sessions), two week break after radiation then had brachy.

I started lifting with a trainer once a week for an hour about the same time I started Lupron. Even though I climb, mountain bike, and backcountry ski, I did not know proper technique nor types of lifting I should be doing.

I lifted with my trainer and once on my own each week. You will have no testosterone. Your muscles need T to maintain mass. Lifting will help stem the loss but even while lifting and still climbing I noticed a loss of definition in my arms. I hate to imagine what hole I would have dug for myself if I was not lifting.

Without T your metabolism will slow as well, meaning you REALLY have to work at not gaining fat/weight. I still gained about six pounds (now lost) during those 18 months.

My last session with my trainer is this week - I like him but he ain't cheap. And I will continue to lift twice a week on my own. I'm now 6 months out from stopping ADT and feel great.

It will tweak you no matter what. But if you don't exercise and weight train you will dig yourself a big hole.

Just this week....

post ADT
CJ1958 profile image
CJ1958 in reply to conbio

Thanks for your reply. You look a lot more fitter than I am. I'm going to start a manageable fitness regime soon and get one of my healthy fit and muscular grandsons to work out with me. He is keen to lend some support and so this could be a good way to keep me motivated.

conbio profile image
conbio in reply to CJ1958

Awesome! Sounds like a good plan. Be consistent and do it every week. You got this!

dlste353 profile image
dlste353 in reply to conbio

Do you see muscle mass starting to vine back not that you are six months out from ADT?

conbio profile image
conbio in reply to dlste353

Yes, feel back to normal now and I see change in my muscle definition. I'd say it took a good 3 months after stopping ADT. And I have hair back on my legs and more on my arms now. During ADT I felt like I was turning into a naked mole rat 😀

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