Low Dose Rate Brachytherapy Monotherapy at the Mayo Clinic

[Tall_Allen]

Mayo just published their 10-year results using seeds as a monotherapy (without external beam radiation). Results look good for anyone with a GS 3+4 or less. If GS 4+3 or higher grade, brachy BOOST therapy is preferable. Men with large prostates or existing lower urinary tract symptoms may prefer SBRT or High Dose Rate Brachytherapy.

pcnrv.blogspot.com/2018/10/...

[cesanon]

It seems counterintuitive to me to attemp to error on the side of underdosing when dealing with cancer.

Sometimes you are forced to do so. But not too often with seeds.

[Tall_Allen in reply to cesanon]

They didn't know they were underdosing in the 1980s and 1990s. In the 2000s dose escalation, intra-operative planning, and stranded seeds changed the effectiveness and safety of low dose rate brachytherapy. Unfortunately, there is a dearth of experienced practitioners.

[Kcusn1974 in reply to Tall_Allen]

I was blessed to have Dr. David Beyer ias my oncologist for mono brachytherapy. He had been doing them for years. I had 0 complications and my PSA level has been nil since after implantation. Best decision I could have made. My recommendation for everyone is do your research and then make a treatment decision. My wife and I researched treatments and interviewed quite a few doctors before making a decision on what approach was best for me and my lifestyle.

[gto67]

In 2012 I had high dose rate brachytherapy at St. Lukes Hospital in Manila Philippines . PSA was 5.86. The procedure went extremely well with "0" to no pain from procedure. HDR brachytherapy is superior to using seeds as nothing is left permanently in your body.

The procedure resulted in 100% cure of cancer. However be aware that you can pee residual blood for years and it takes years like wise for the PSA to reach nadir or its lowest point. But this is normal with the procedure and I still pee microsocpic blood 7 years from procedure. No big deal as residual blood can be there for life. Cure rate is equal to or superior to surgery. Be aware that hormone chemicals like Lupron have a 40% chance of causing coion cancer. I had the radiation only and will never take treatment with a 40% chance of colon cancer. Radiation can cause cancer but since brachytherapy is from inside out no radiation passes through the body except in prostrate with minimum exiting prostrate, unlike IMRT. Hope this helps. Dave

[Hidden]

I think it's really great that there are some men that regularly contribute to this forum, in some cases apparently years after their own treatment. It's also commendable to seek out information about treatments and post it on the site.

That does have a value and a place.

I do have concerns though about how that information is sometimes presented particularly at a time when men are undergoing an emotional coaster caused by a cancer diagnosis, having to make treatment decisions or deal with its aftermath.

I believe men are seeking support not just information when they come on this site.

You can present information in counter-supportive ways.

As regards treatments there are lots of variations and new ones coming on line. There is no one size fits all simplistic solution.

Brachytherapy just isn't appropriate in all cases and furthermore, it's not available to everyone.

I'm not sure how this site appears to everyone. To me it appears as "Health unlocked", which is British. However it is global and I've coma across guys from the UK, Europe, Australia, New Zealand and Pakistan, admittedly all English speaking. Oh! and the US.

Brachytherapy and other treatments touted on here may not be available globally, e.g. proton beam therapy.

Even if it were, it still does not mean that everyone can access it. This may depend on the prevailing healthcare system.

There are other, human reasons why particular treatments are not appropriate and I think this needs to be considered when presenting information. The information should be entirely factual and not presented to individual members in such a way that it is directive, persuasive or anxiety provoking.

Great that brachytherapy is as good as other treatments or even possibly better, (in some cases). It's not particularly supportive to be told that when, you're a few days before undergoing the surgery you've already decided on and you're anxious about it, when the physicians in whose hands you are in have said it's not an option, your health care system doesn't provide it, your health care system does potentially provide it but you can't financially access it, the thought of having radioactive substances implanted in your body however temporarily just doesn't appeal to you or it contradicts the advice given to you by physicians and undermines your trust in them. It does appear some health care system don't promote that trust, but it doesn't apply to all.

Overall OK, it's informative to present information in posts on their own that aren't actually a response to an individuals needs. Nobody has to read it if they don't have a need to. However, when responding to an individual there needs to be some consideration of their holistic needs and their individual circumstances, stage of their cancer experience, what's available to them where they live and respect for the fact that we're humans not just information processing machines that see things concretely and literally without emotion, value judgements or perceived meaning.

OK we are biomechanical machines, but there's a spirit in it and a consciousness, don't disregard it.

[Tall_Allen in reply to Hidden]

Tim-

Brachytherapy is one of the oldest treatments for prostate cancer, going back over 100 years. Sadly, brachytherapists are a dying breed (literally, with Peter Grimm's passing a few years back- one of the greats!)

Yes, it's true that some therapies and diagnostics are only available in some countries (e.g., carbon ion therapy or Combidex scans). That shouldn't stop me from writing about them or informing patients who can get them about them. It's kind of strange that you think so, imho. It's also strange that you have a phobia about radiation -- if you have high risk PC and you are having surgery, about 40% of such men have adjuvant or salvage radiation following - I hope you don't have to, but if you do, I hope you deal with your phobia by then.

To see what your odds are of surgery alone being successful (based on the experience of over 10,000 US men), fill out the MSK nomogram:

mskcc.org/nomograms/prostat...

If you're in the UK, they certainly offer brachy boost therapy there - Peter Hoskin was one of the first practitioners. Perhaps the reason that my post discomfited you is that you did not do your due diligence in investigating other choices. Because most of us start with urologists, some guys never get beyond that. I saw 6 specialists (including 3 surgeons) before deciding on the one to treat me. The first inclination is almost always "just cut it out." The statistics tell us that that is not always curative.

[Hidden]

I think you missed the point entirely.

[Tall_Allen in reply to Hidden]

Perhaps you can state it more clearly then. Good luck with your surgery!

[Hidden]

I am so sorry, I can't think of any response that will be of any help to either of us.

[ASAdvocate in reply to Hidden]

Tim, I have somehow managed to entangle myself in EIGHT online PCa forums and an in-person support group.

I have seen many instances of men cancelling surgery and then choosing another type of treatment. Again and again.

IMHO, if they have a surgery appointment, but are on a forum expressing a degree of uncertainty, then they should be provided information on other options.

Peace, Be well.

[Hidden in reply to ASAdvocate]

Hi, thanks for sharing your experience with me. Wow! I hope you're not so entangled that you're not neglecting other aspects of your life!

I have to concede the point that if people are expressing serious doubts about undertaking a particular course of treatment then it can be helpful to offer them further information.

However, I still have some concerns which I hope I can clarify. Firstly can you tell me if, in your experience, men only have doubts about surgery and consider cancelling it. Do they never have doubts about other treatments and consider cancelling them? What sort of doubts do they express?

One of my concerns is the manner in which information is given in this website. There are all, kinds of different facets to information giving which have to be considered If these facets are ill-considered, then what is intended to be informative can actually be mis-informative. From observing your posts, this is not something I would accuse you personally of.

One facet of concern is the apparent "authority" of information given, because perceived authority can be quite persuasive especially when someone is anxious or vulnerable. Unfortuately, and this is not intended to belittle anyone, but most people aren't really equipped to always be able to discriminate what or who is genuinely authoritative from what isn't.

I don't believe that anyone on Healthunlocked is a qualified medical expert and members should be careful not to accidentally or deliberately present themselves as an expert, hence an authority. I note that at the top of this page it clearly states

"Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them."

Another concern is that I would hope that this site is not just about information, but should be MORE about support. As I stated above, people aren't just information processing machines. I'm using one at the moment, it doesn't get anxious, it doesn't misjudge things, it doesn't act through impulse rather than reason, have personal preferences, different values and perceptions. it's a laptop. Some posts, luckily very few, ignore the fact that people aren't computers. Perhaps these posts are really from laptops!! See the Turing Test.

Happily, I guess most people will accept that. Those that don't.... what do they say about leopards?

Finally, I am intrigued by your use of the word "entangled" which feels like it has some negative connotations - - - - like can't escape from.

I fear I might have to admit to being "addicted" to this forum. An addiction is a habit you find very difficult to stop despite the harm it's doing to you. It's probably motivated by my "need to be needed" and what someone once referred to as my "projective identification" with people, i.e. a sort of misguided empathy where I put myself in another persons shoes , but the shoes aren't really their's. I think, how would I feel if I was in their shoes? Truly they are different. so how I feel on their shoes isn't the same as how THEY feel in their shoes. Antway, the result is that I'm upset by things that are said to people, on their behalf, when actually they themselvs aren't upset. I shouldn't take responsibility for other peoples feelings or their decisions.

Perhaps it'll be better when I get back to the UK, where I can get on with the many other things I do, whereas, at the moment, I can't even see where I am most of the time - - - - где тулет?

[ASAdvocate in reply to Hidden]

"However, I still have some concerns which I hope I can clarify. Firstly can you tell me if, in your experience, men only have doubts about surgery and consider cancelling it. Do they never have doubts about other treatments and consider cancelling them? What sort of doubts do they express?"

Probably 80 percent of the "second thoughts" posts that I see are from men bound for surgery. I think that is because they only spoke with one doctor. or had an immediate "get it out!" impulse. The issues have mostly to do with side effects, as they read of other surgery guys discussing their less-than-optimal results.

The second thoughts on RT are mostly from two memes: "You can't have surgery after radiation", and "only a post RP analysis will give you a true assessment of your cancer". The former point is very misleading, and the latter point is true, but RT advocates will consider it outweighed by fewer side effects.

My free time in retirement allows me to flit about the internet. I used to "discuss" politics for 34 years, but stopped that after 2016. Maybe participating in these groups has some positive aspects, unlike politics. I also find time to travel the world, swing dance, jet ski, hike, and work on my and my girlfriend's houses. That's a full schedule at age 74

[Hidden in reply to ASAdvocate]

Ha thanks for that.

Is that girlfriends plural?

Your life is truly to be envied.

Enjoy!

[ASAdvocate in reply to Hidden]

One girlfriend. You made me double-check my punctuation. All good

[Hidden in reply to ASAdvocate]

My mistake, your girlfriend has several houses!

In any event, that's not what I envied, I'm happy with my third wife.

We live in North West England but she has kept her apartment and I have spent some time renovating it. Not a regular thing, it's a bit arduous getting to Saratov and back.

[Tall_Allen in reply to Hidden]

You may be interested in this study on treatment regret for the various kinds of radiation offered at UCLA. As you can see, the least amount of treatment regret was among men who chose SBRT at 5%. For comparison, about 18% of men regret their decision to have surgery.

pcnrv.blogspot.com/2017/01/...

[Hidden]

Ah but - regret about having made a treatment decision AFTER the treatment is not same as changing your mind about treatment BEFORE the treatment.

I would imagine that changing the treatment decision before treatment is more of, although not entirely, a rational process. Whereas "regret" is more of an emotional response.

In any event, statistics about changing treatment decisions or regrets probably says more about the men than it says about the treatments. Just because less men cancel a particular treatment or less men regret it doesn't necessarily make it a better treatment. "Better" is a value judgement and depends on what criteria are used to make the judgement. Does a value judgement based on subjective criteria have any less validity than one based on (often ambiguous) objective criteria.

Furthermore, subjective value judgements depend on individual perceptions and perceptions can change. What might not seem that important before treatment, might assume more importance after treatment. Isn't that the underlying process of "regret". The classic example is ED, men may put more importance on getting rid of the cancer than on ED before treatment. After treatment and they feel the cancer has been got rid of and the reality of ED kicks in, perception changes and that's regret.

Overall, perhaps someone who is " detached" I.e. is not actually having to make a decision and considers themselves to have knowledge of objective evidence about the relative values of the various treatment options is probably not using the same criteria as the person undergoing the process.

Which suggests to me that if you want to help someone make the decision you should offer impartial information only, free from value judgements and without trying to persuade someone that one treatment is better than another.

Another question, I see mention of some men rushing impulsively into surgery because they want to have it "cut" out. Why is always written as "cut out". Couldn't it be some men want to " get rid". Radiation may get rid. Does it have to be always assumed that men who rush into treatment only choose surgery. Does nobody rush into radiation treatment? "Rushing" is in itself a value judgement. I suspect if anyone perceives radiation as being "better" than surgery will judge someone who chooses surgery within a period of time as rushing, whereas someone choosing radiation in the SAME period of time won't be judged as rushing.

[Tall_Allen]

This was about the emotional response to one's treatment decision, not about the emotional roller coaster we all go through in deciding. It was obviously the result of the work the patient put into it and whether his doctor practiced shared decision making well.

"Better" is a measurable, objective term. It can be better oncologically, or better with respect to toxicity outcomes. Only the relative salience of those outcomes varies subjectively from person to person. Comparison of treatment outcomes can only be done with research about oncological outcomes, toxicity, and patient-reported outcomes. It is an entirely different matter. Treatments are objectively better, worse, or the same on oncological and toxicity outcomes, and I will continue to report about that. What "value judgment" do you perceive I made?

i'm sorry that for whatever reason (perhaps potential toxicity?) you were unable to partake of the most oncologically successful therapy for men with your diagnosis. Hopefully, it will work out for you, as it seems to be doing. I can understand why you're anxious, but that is for you to deal with. I suggest psychotherapy and mindfulness.

Most of us have been through the "just cut it out" phase. Some of us never get past it; some of us go through it, investigate other alternatives, and change course; some of us go through it, investigate other alternatives, and come back to it. Rushing into treatment and only seeing one doctor increases the likelihood of treatment regret later. That is an inapt hypothetical. No one, in the US at least, rushes into radiation treatment for the simple reason that we ALWAYS see a urologist first. If we meet with a radiation oncologist, it means we are investigating alternatives - a superior process.

[Kcusn1974]

My best guidance to ANYONE diagnosed with this beast of a disease is to do your research! It’s not a one size fits all disease. My wife and I did Months of research, interviewed doctors and solicited information from various groups before proceeding with making a decision. When you make an educated decision you don’t have regrets.