ADT: How long until I can expect the hot flushes to kick in?

@climateguy
It is interesting that you bring up the fact that they said you’re not eligible for BT because your prostate is too big. Just last night, I was in a reluctant brotherhood bi-monthly meeting And one of the guys there said he had the same problem. They have to put in the seeds before they do the BT and with a very large prostate the seeds have to be in such a large area that it just doesn’t work. He was definitely frustrated by it.

I’d be real interested in seeing a study like the Trip study where they really did take on advanced cases.

I know in my case stopping ADT after eight years, could be a problem. I have BRCA2, which makes my cancer very aggressive. When I was on Zytiga, I stopped taking one pill out of four for 18 days to see if it would help with the brain fog. In those 18 days my PSA went from .2 to 1. My oncologist is concerned that if I stop ADT and my testosterone rises I’m going to have the same sort of problem. Went back to four pills of my PSA went back down. I wonder if other advanced cases that have things like intraductal, large Cribriform, seminal vesicle invasion, EPE or ECE Could have the same problem.

@jeffmarc In the European Society for Radiation Therapy and Oncology guidelines
https://www.thegreenjournal.com/action/showPdf
Published 2022

Under a headline “Indications”: “Detailed patient selection criteria have been previously published.. In addition to ensuring that there are no detectable metastases, good urinary function and predicted life expectancy of >10 years several new concepts have emerged:

i) Gland size: previous guidelines have recommended limits of 50–60 ml however for both LDR and HDR, if there is minimal pubic arch interference, there is now published data showing that much larger glands can be successfully implanted with good results for both dosimetry and biochemical control with no excess toxicity [5,6].”

Footnotes 5 and 6:

5. Le, H. ∙ Rojas, A. ∙ Alonzi, R. … The influence of prostate volume on outcome after high-dose-rate brachytherapy alone for localized prostate cancer https://www.redjournal.org/article/S0360-3016(13)00554-3/abstract
“Conclusion: Prostate gland size does not affect dosimetric parameters in HDR-BT assessed by D90 and V100. In patients with larger glands, a significantly higher biochemical control of disease was observed, with no difference in late toxicity. This improvement cannot be attributed to differences in dosimetry. Gland size should not be considered in the selection of patients for HDR-BT.”

6. Stone, N.N. ∙ Stock, R.G. Prostate brachytherapy in men with gland volume of 100cc or greater: technique, cancer control, and morbidity https://www.thegreenjournal.com/servlet/linkout
“Conclusion: This study demonstrates the feasibility of implanting patients with PV100. Very large PV does not influence bFFF. Although urinary retention rates were higher, the long-term urinary symptoms were no different between the two groups. Requirement for transurethral resection of the prostate was no higher in patients with PV100. Radiation proctitis rates were similar for both.”

@climateguy
Have to admit the documentation seems to say, yes, you can have a large prostate and get BT.

The thing is the guy last night that I heard from, and you, both have heard from doctors that say just the opposite..

I wonder why these doctors do not follow the documentation that you’re referencing. Have you brought the documentation up to your doctor to see if it makes a difference in getting BT?

The guy last night did say something about the fact that his having both hips replaced and the metal related to that could be a factor. When I questioned him about it, he said that it was just that the spread of the seeds was too wide an area.

Strange!

I've been studying in my spare time all week to prepare to make a case to my RO.

Initially I assumed the cancer center he works at didn't do BT, so I asked him for a referral to someone knowledgeable about BT. He replied right away, same day, saying he ran the BT at that facility. When he wrote I didn't fit treatment criteria, I replied saying I've heard a prostate can be shrunk by ADT and in other jurisdictions that is acceptable, and I asked him about an outlet procedure to address my urinary problems prior to therapy. He did not reply. Its been four days. When I first consulted him he went on about how accessible he was, going so far as to say I could access him by telephone basically any time, etc.

So, I've researched looking for evidence that high level guideline setting groups in other countries would find a way to give me EBRT + BT boost because they believe it is the superior therapy for my case, and found some support.

I've been looking for the evidence that convinced them, i.e. the published papers. I've tried to understand why this RO so just rejected my case as a possible EBRT + BT candidate, and why he suddenly didn't respond when he claimed he was so accessible.

I don't think prostate size would be the ultimate issue he wouldn't budge on - I think it is the urinary issue. A lot of BT general info mentions patients with some urinary issues as being unsuitable BT patients.

So I haven't seriously researched what the urinary problem is. Other jurisdictions allow TURP procedures to be performed to address urinary issues, as long as the BT is administered 3 - 6 months later. I don't know anything about what is involved with a TURP. What I want to find more about is how serious the complications are after BT, if a serious complication arises, and why.

The Ascende-RT trial had a high percentage of grade 3 urinary issues that is said to have "scared" many in the US away from BT, or in some cases, given those committed to other sexier sounding highly promoted therapies a handy excuse to dump on BT. BT proponents point out that no other study of BT has ever found that level of grade 3 complications, and one says the cancer centers in involved had little experience with BT at the time. Subsequent studies don't find a high level of complications. It is a fact that BT is declining in the US. It is also a fact that BT is expanding in Canada, the UK and Europe because it is a superior approach in many cases. But, it could be that patient selection, i.e. ruling out people with urinary issues that are likely to be problematic after BT is necessary. I don't know.

I want to be in a position to debate my RO, and to be capable of deciding without regret to seek care elsewhere if I decide his reasoning is not acceptable to me. Its a big decision for me. My RO is very experienced, and he has my respect.

Antibiotics can sometimes reduce the size of the prostate. If you are having BPH type issues that could make a difference.

ADT can do it as well, Maybe the two together could get your size down, if so, they might not consider it a problem. Of course the documentation you collected seems to show that that isn’t a problem, so it’s frustrating.

Disappointing to hear the doctor hasn’t gotten back to you when he says he’s so available.

You ask about TURP, but I don’t see you mentioned anything specific about having problems with urinary issues. Do you have issues that seem like they could be BPH? A TURP may help too, because it can also reduce the size of the prostate, and maybe eliminate the urinary issues that you say are possibly preventing you from getting BT.

TURP works by inserting a specialized instrument called a re-sectoscope through the urethra to access and remove excess prostate tissue that is blocking urine flow. This creates a wider channel for urine to pass through, relieving symptoms of an enlarged prostate (BPH). An electrical loop on the resectoscope cuts the tissue, which is then flushed out of the bladder.

Hope you can get this all resolved.

@jeffmarc My prostate was measured by MRI at 62 cc. The RO says his usual cutoff is 50 cc, but 60 is acceptable by many. Its not like it is 100 or more, which Stone says is fine.

My prostate has a fairly large tumor in it, that can be expected to shrink now that I'm on ADT.

I don't know anything about TURP, i.e. is it a problem if the re-sectoscope chews up cancerous cells, etc. My urinary status is something I've been living with, that is, a very weak flow, often it takes a while to start, and I have nocturia - getting up every 2 hours to relieve myself. The RO had no interest in details, he just looks at the IPSS score. I can't find the one he has - perhaps it is in my desktop computer I'll be able to see tomorrow.

I've decided I'll be getting a second opinion unless my RO contacts me saying he's decided I qualify for EBRT + BT.

Re: your wondering about why several docs you've heard about, i.e. my RO and the doc for the guy you heard about or met who got turned down for BT based on the size of his prostate, anyway, why do the Europeans and others find larger prostates to be no problem, whereas at least some US docs do?

Note that the European document updating their criteria that I cited was published in 2022. They cited research papers from 2013. So it took them that long to decide what to do once the research was public. In Europe BT use is expanding, so there isn't a widespread feeling that it isn't any good even though the data clearly indicates otherwise. So in the US, where BT is regarded by many as a dying art with large advertising budgets devoted to promoting protons, cyberknife, etc, there may be less interest in updating guidelines.

Also, when I needed a heart ablation some years ago, I was aware there was an advance in the equipment available. A heart ablation to deal with a-fib involves sending a probe into your heart via a vein and killing cells in certain areas to stop the errant electric signals causing the heart to beat improperly. So the US approved instrument used heat, and depending on the skill of the surgeon, a low %, less than 1% of patients could find that they had a hole burned through their heart and into their esophagus, i.e. they might be dead. The new instruments used, I think it is electro poration, did not kill patients in this way. The Europeans had adopted it by the time I couldn't put off my procedure any longer, the US had not. Some US centers were running clinical trials where a patient could get a surgeon using this. I found a local guy who had 500 procedures under his belt and my procedure was a complete success with the older more dangerous tool. US guideline creators can be too cautious, not cautious enough, or just big doofuses (why did they say in 2012 PSA should not be used as a screen?) or really good.

@climateguy
You really need to speak to a urologist to find out if a turp makes sense for you. I would definitely would be frustrated with that low flow problem. If I Get up from sleeping it can take 20 seconds before I can really start peeing my bladder out. Sort of frustrating standing there nothing coming out, but then it does and it’s normal flow. That’s what happens when you’re 78 I guess.

You could Get a second opinion from another urologist about your low flow. Have you tried Flowmax?

Hopefully, you can get your prostate down to a size that they will work with. Seems like doctors can be real picky about some things. I know some radiation oncologist don’t like patients to use barriers like SpaceOAR, Barrigel, or BioProtect. Another doctor quirk.

@climateguy

I agree with Jeff Marchi's comment - talk to your urologist about a TURP. When my PC turned to stage 4, I was having similar but even more extensive urinary problems. The TUPR procedure was easy and eliminated all those issues for almost four years.

I'd also recommend going back through this group's past posts. While there's some of the last-ditch desperation or poorly informed about alternative treatments, etc., mostly there is much good advice from people who have been and are going through their cancer journey, and are generous with their experience and their empathy. The same is true of Facebook groups the Prostate Cancer Foundation and others sponsor.

I hope you are near enough to some of the major cancer treatment centers that you have good options if you decide to move on from your current RO. Keep doing the research you've been doing and asking the questions that follow. For all of us, a big part of the journey is trying to hang in there with a good quality of life until the next breakthrough or combination of treatments emerges.

@jimw77 Thanks for your comment. I like to check in on the comments people are making on this site. I somehow feel better to be in some sort of contact with people more or less in the same boat I find myself in.

When I try to write something in response, sometimes I find my thinking about all the new info I've been taking in since my diagnosis crystallizes into a fuller understanding.

I live near enough to Seattle that I can access treatment centers there. Doctors from Seattle have been prominent in the brachytherapy world for a long time. I was looking at the Seattle Prostate Institute website. They seem primarily oriented towards offering brachytherapy to patients from around the world. At least when they wrote up the website this seems to be what they were into. (The website feels dated somehow).

They have a program where a patient sends in all relevant diagnostic info, like biopsy, MRI and PET scan reports and images, along with the clinical notes of their current doctors, then they take a look and if they think brachytherapy boost or some other therapy they offer (they are promoting Cyberknife, and others) might be applicable, they then contact you to come in for further examination. This sounded like a promising place to start with as I look for someone to give me a 2nd opinion.

My next choice might be Mayo in Tucson. I haven't investigated what they offer, but I know they are NCI designated, and I love Tucson, except for in the hot months. My wife's sister lives there, and my wife and I would love to hang out living in our small travel trailer in that area for any treatment period required.

@jeffmarc regarding your interest in studies of really high risk patients and EBRT + BT boost:

Here is a position paper based on a “comprehensive literature search”, that recommends EBRT + HDR BT boost therapy for men with “localized” intermediate and high risk prostate cancer. Some of the patients in the papers they looked at were T4, or NCCN defined “high risk”.

It starts: "The American Brachytherapy Society convened a task force for addressing key questions concerning prostate HDR brachytherapy boost with EBRT for the primary treatment of localized prostate cancer. "
https://www.sciencedirect.com/science/article/pii/S1538472125001175
There are 90 references.