RT without HT: I am approaching 78. My... - Prostate Cancer N...

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RT without HT

Nordman profile image
14 Replies

I am approaching 78. My last PSA is 13,37. It was 1.4 in 2018 ie the last time I had a test. Prostate size 36 cc, prostate density 0.39. The MRI indicated a 14mm tumour fully contained within the prostate in the lower left quadrant, with ‘something on the right that I have been informed is possibly/probably prostatitis. I am currently designated as T2 ,PIRAD 4 I am waiting for a biopsy. I had a HOLEP in 2012.

I had a very serious transitional cell kidney cancer in 2017 and despite the initial poor prognosis was discharged this year and told it was now unlikely to recur.

I am fit and active with a good bmi. A never smoker or drinker. Other than occasional ectopics I have no comorbidities like high bp etc.

I am in the UK. IIRC, I have been told my treatment will be VMAT IMRT with HT. Dr Mark Scholz advises against HT for elderly men due to the debilitating side effects. That is in line with my thinking and I want to absolutely exclude HT.

In my region of the UK (which is not at the PCa forefront) there are waiting lists and delays. If I refuse HT I anticipate a delay of months for RT. I currently have to wait 4 weeks for a biopsy and 5 to 6 weeks for the pathology results. The NHS waited 2 months before they informed me that my psa was elevated. I could possibly stretch for private treatment like HIFU, but there are such mixed reviews, that I may be better off with the IMRT. The 5-treatment RT protocol with no HT at the Royal Marsden in London is maybe just financially possible, but would it be any better than IMRT and refusing HT?

Is IMRT and no HT or possibly HIFU a good decision considering my age and possible remaining lifespan? The average male lifespan in the UK is 82. I would like at least another 4 years, but obviously more if possible. I need to be around for my wife. Is that likely to be attainable with good QOL, when opting solely for RT?

I have been going around in mental circles for weeks. I would really welcome advice.

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14 Replies
Justfor_ profile image
Justfor_

Could you meet them at half the distance? Anti-androgen monotherapy instead of ADT. As for side effects, only gynaekomastia easy to mitigate by Tamoxifen. In the UK the recommended dosage for Bicalutamide, I hear, is 150 mg/day. Unnecessarily high IMO. There are 3 second generation ....lutamides that are of comparable potency to ADT (Lupronide) but also coming with more serious side effects, though much more expensive that your NHS wouldn't prescribe to someone yet untreated like yourself.

Nordman profile image
Nordman in reply toJustfor_

Thanks for your reply. I will look at androgen monotherapy.

I have read of mixed outcomes for Tamoxifen. Some saying it did not resolve the gynaecomastia.

BW

Justfor_ profile image
Justfor_ in reply toNordman

Rule No 1, start taking it from the first day. Do not wait to see it happening to start then. Reversing isn't always possible. Rule No 2, do not stop taking it when stopping Bicalutamide. The latter has a long half life (6-7 days), so it will take 1.5-2 months to completely wear off.

Mtnhigh profile image
Mtnhigh

I would think it's hard to make that decision (on ADT) until you have the biopsy results. My husband was in your position a year ago. He is 78 and had a 4k psa score of 10. The mri showed pirads 5, 4, and 3. A PSMA Pet scan showed no spread outside the prostate. The biopsy result was gleason 7s (3+4) and gleason 6s. His doctors all advised ADT for 4 months as he was termed gleason 7 unfavorable. However, he chose no ADT. My husband was very opposed to it due to his age and side effects. Also, he had a stroke about 4 years ago and didn't want to risk another. My husband is like you, his QOL is very important. We understand the risk he takes. He did 20 sessions of IMRT, finished in July. His first psa after RT at 3 months was .9. Once you have the biopsy results you'll have a better understanding of the risks with no ADT. These decisions are very difficult sometimes. Wishing you the best!

Nordman profile image
Nordman in reply toMtnhigh

Thanks Mtnhigh

I am trying to prepare for my biopsy result, because I anticipate that HT will probably be suggested at the discussion stage.

A Gleason 6 or 7 has been suggested as the possible result, but I have had surprise reports in the past.

Is your husband at peace with his decision and the subsequent PSA post RT?

How was his urination after RT and without HT to shrink the prostate?

How is your husband now - is he problem free?

BW to you and your husband.

Lost_Sheep profile image
Lost_Sheep

Setting aside my outrage at the cavalier treatment the NIH is giving you, I suggest (in the absence of accelerating your treatments) investigating less conventional ways of attacking your cancer which may be able to mitigate or slow your disease.

I was diagnosed April 2023 with prostate cancer (probably confined to the prostate, but not for certain) and had prostatectomy last month (Oct 24, 2023). Between those dates, I did as much research as I could and found a number of therapies which are not considered medical "standard of care" in the U.S.A. (my home). Most have clinical trials supporting their efficacy, at least partially. I do not recommend completely unproven remedies or any that would interfere with accepted and proven care, but only ones that promise benefits without deleterious effects or which conflict with standard care (e.g. drug interactions).

I cite a friend of mine I met through a support group who abandoned hormone therapy which devastated his quality of life and took melatonin (good, pharmaceutical grade stuff, not the unregulated over-the-counter stuff) and some other holistic/naturopathic measures. He went from being depressed and unable to even leave his home more than a couple days a week to resuming a vital 50 hours a week (He is a restauranteur) at work without depression.

Changing one's diet (e.g. antioxidant foods and eschewing processed foods), exercising more, regulating sleep patterns are all holistic approaches that NO physician can reproach.

I apologize for not having information more targeted at your particular situation. My research was entirely focused on my diagnosis.

Good luck.

Jaffa_2001 profile image
Jaffa_2001

Hello

I am in the UK and under the NHS at Worthing on the south coast. When salvage radiation was proposed by the Oncologist he also proposed HT before my radiation treatment.

I refused and asked him why I needed it and he could not really give me a satisfactory answer, so as a compromise he insisted he examine me with a DRE.

After the DRE he agreed and said I did not need it, so I went straight off to have the scans etc. prior to RT.

The radiation treatment was not until 3 months after that consultation and did not impact on the effectiveness of the treatment.

The NHS here is just as slow unfortunately and you do have to keep on at them sometimes to get a response, such is the current state of play I'm afraid.

Hope that helps and best wishes.

Brian.

Nordman profile image
Nordman in reply toJaffa_2001

Thanks Brian

I don't understand why a DRE helped with his decision.

My best wishes to you also.

Jaffa_2001 profile image
Jaffa_2001 in reply toNordman

Thank-you.

I think he was expecting to find some sort of lump or area within my prostatic bed that would justify his decision to suggest HT. But he could not feel anything so totally agreed with my reasoning and questioning why?

It was after that consultation that I learnt not to just accept a clinician's opinion or conclusion without finding out a lot more before any decision I made about this blasted disease and its treatment.

Ironically I am at the Hospital tomorrow to now discuss me starting HT as my PSA has hit 21!

Good luck - Brian.

maley2711 profile image
maley2711

I understand your concern !!! A PIRADS 4 is no guarantee that you have significant PCa, though of course the rising PSA is a great concern. It is very unlikely that the wait for the biopsy , or even another few months for treatment if biopsy does find significant cancer, will greatly or at all affect your eventual long-term outcome re any PCa you have.

Did you view an online Scholz video? Perhaps you could provide the link for us? I would seriously consider his views on this.....he seems top notch when it comes to understanding all the different considerations re diagnosis and treatment of PCa. I just completed reading an analysis of the benefit of long-term ADT when added toRT for high risk men..... 10-15 men need to receive 18 or more months of ADT in order to result in one man avoiding distant metastasis over a 10 yr period....obviously ADT added to RT is no magic bullet!!! That is a lot of men enduring the adversity of ADT in order to help one man? Then again, some men claim little harm from the ADT..... hot flashes seem the predominant problem? Google will help you find detailed info on ADT side effects and probabilities of their occuring.

Nordman profile image
Nordman in reply tomaley2711

Thanks for addressing my concerns.

I looked at so many of Scholz's videos and it was just a small statement that it is difficult to find. IIRC he also said in one of the videos that the HT benefit was about 10%. I will have to trawl through them again.

maley2711 profile image
maley2711 in reply toNordman

Don't expect a big effort...if any at all.....you have enuf on your plate I know!!

Bethpage profile image
Bethpage

Only a comment about the ADT. My husband did 2.5 years of monotherapy bicalutamide starting 2 months prior to 39 IMRT for BCR. He was 76 when he started bical, 78 when he finished. His dosage was 50 mg/day. He took tamoxifen 10 mg orally against gynecomastia. Tamoxifen now comes in a patch. He had absolutely no SEs other than very mild hot flashes 1 or 2 days/week. He followed this protocol as he already had mild cognitive impairment and did not want to risk further. He finished his 39 RT in July of 2019, finished bical in October of 2021 and remains undetectable with no QOL impact from either treatment. I wish you very excellent outcome from whatever you decide.

Nordman profile image
Nordman in reply toBethpage

Thanks for providing that positive experience. The negative ones scare me. It is difficult to decide.

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