The pain of making the decision of tr... - Prostate Cancer N...

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The pain of making the decision of treatment choice

Atlantic77
Atlantic77

I would be interested in hearing from anybody who has been treated using SBRT or RP.

I am on the brink of making a decision - either RP or SBRT using Truebeam.

I have been duly informed of the many benefits of SBRT by TA and am truely grateful for his valuable input. I guess I'm just trying to be as thorough as possible. I am only 43 so QOL issues are obviously of great concern to me as well as a successful cure. The main issue with SBRT seems to be a lack of long term follow up which is why I had to fight tooth and nail to be allowed access to this form of treatment. Every medical specialist I have seen so far (3 ROs, 4 urologists) have advised surgery due to my young age profile.

It is such a heartbreaker of a decision to have to make either way at such a young age and I am sometimes tempted to just leave it and take my chances. I have read some articles that suggest that treatment over non-treatment dose not necessarily guarantee a prolonged life span which just leaves me totally confused. It seems that there is a lot of confusion as to what to do and the tendency appears to be to rush and treat rather than deal with the anxiety of being powerless over what happens either way.

27 Replies

Take your time - there is no rush to decide:

pcnrv.blogspot.com/2016/08/...

pcnrv.blogspot.com/2017/10/...

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Quite older than you I faced the same dilemma. Went by the RP route when realized that the chance for a real PCa cure is minimal. Under this assumption, every treatment just serves as a temporary plug on a rusty and leaking tank. The more patches one has, the longer time the tank will be of service.

I can really empathize with you, having been in the same situation a few months ago. But before I go on, I'd like to recommend that you take Tall Allen's recommendation to heart. Let me also say that I'm speaking personally and emotionally, not medically.

I'm 68 and needed to take action due to the nature of my PCa. I ruled out RP because the side-effects are severe and immediate. The side-effects from the other treatments are, from my perspective, less severe, and less immediate.

I got three different recommendations from different urologists and radiation oncologists regarding EBRT, LD brachy, and ADT, and combinations thereof, and could not make up my mind. The best recommendation, medically, seemed to be LD brachy. However, my gut instinct was that it was not right for me. A very astute friend of mine has a saying: "never go against your gut." So I went back to the original urologist and radiation oncologist and conferred again, explaining my inability to select a treatment.

The RO waxed philosophical. He said that even the "right" treatment sometimes fails. He asked how I would feel if the treatment I selected against my gut instinct happened to fail. I realized I would be in a very, very bad place psychologically if this were to happen. So I went with my instinct: EBRT and ADT, and am at peace with the decision.

I'd also like to reaffirm justfor's message: if the treatment you select doesn't entirely eliminate the cancer, there are fall back treatments that can be applied. And all the while you are buying time, while researchers work on cures and other treatments.

All I can say is take your time in making your decision. My husband, 67 went the RP route a year ago. He is totally continent, had minimal urine leakage issues, and was out of diapers and pads within 6 months. ED is a different story but he had issues with that even prior to surgery. He rushed into his decision however. He just wanted "the cancer out". After surgery the pathology came back and we are faced with positive surgical margins, ECE and further treatment. So the surgery did not remove it all. I agree with justfor above. That no matter what route you choose, at some point you probably are going to be facing another treatment decision. Only thing I can add is if you go the surgery route can they assure you, you don't have ECE...because that is notoriously hard to spot on an MRI. Good luck to you!

I am 52 and coming up on 2 years post treatment. I have no quality of life issues whatsoever at this point. QOL was a big deciding factor when ruling out any dual therapy or RP. Tall Allen’s RO, Dr King, who also consulted on my case, is a world leader in HDR therapy via SBRT and his opinion was that RP and HDR were equally effective. But as someone pointed out here, the potential side effects from RP are immediate and irreversible when it comes to ED, and other life-changing side effects. I would seriously consider HDR monotherapy and if you are concerned with quality of life, take RP off the table. I did a ton of research and consulted multiple doctors, who were leaders in their fields from LDR brachy to HDR brachy and HDR SBRT and RP, to come to my very educated gut decision. It was super hard to make the decision until I had taken the time to research ad nauseum—and meet in person the possible treating doctors. The one thing that stood out during the process was that it got more confusing until the very end. Then my final decision became very obvious. If you are feeling that there are no right answers for you at the present moment, definitely take your time to explore all your options in depth so you can come to a decision you’re happy and comfortable with. I know that this opportunity exists for you. I was the same way —feeling like I’d be in a bad spot no matter which way I went on treatment. Now I’m grateful I went through the process to make the the decision that was right for me. Definitely feel free to reach out if you want any more info on my treatment, HDR brachy, or your want referrals to doctors, or just more support in general. Take your time and trust the process.

what is HDR sbrt...I have never seen those 2 abbreviations together? I have seen sbrt and hdr brachy?

HDR - high dose rate radiation - brachy therapy is two short treatments and brachy is the delivery method. LDR brachy — Low Dose Rate —is seed implants that release radiation over several months. HDR beam therapy is a high dose rate of radiation but delivered with beam — SBRT is the type of beam, sometimes called Cyber Knife because of it’s ability to hit a more precise target. Instead of taking weeks like a standard beam treatment, HDR beam is five days of higher doses of radiation. HDR beam and HDR brachy use similar dosages so the effectiveness of both can be attributed to the effectiveness of radiation delivered in higher dosages with less frequency.

Thanks Curtis. I just don't recall seeing studies HDR used in conjunction with sbrt.....i understand that it could be used as a further description of sbrt. I asked because i thought maybe you were referring to something with which I was not familiar. If it is just as accurate, causes no significant increase in serious side effects, no more causation of secondary cancers, and equal or better long-term "cure" rates, we would think will become SOC !! I have seen studies that it will also be a lower cost treatment than standard radiation treatment....makes sense, because of much fewer days of treatment, and thus hours of expensive radiologist billings!! Wonder if some radiologists will be biased about the use of sbrt? I have read more patient complaints about treatment with HDR brachy , and fewer complaints about sbrt, probably related to non-invasiveness except for fiducials.

Any SBRT treatment, from my experience after meeting with Dr King who pioneered it, is HDR. So they do High Dose Rates over fewer sessions , for example 5 treatments. It’s significant in that studies show that HDR whether delivered by brachy or SBRT, does have more effectiveness, especially as a monotherapy. When King shows you studies to prove the effectiveness of his treatment, he will show you HDR studies. For any further detail, I would consult with Tall Allen because he had the treatment. My whole goal , why I zeroed in on HDR SBRT with King or HDR brachy (which I ended up going with), was to get the absolute most effective treatment in a few as sessions as possible. I was also dead set on monotherapy. I had a lot of doctors wanting to throw in ADT or external beam. As a 52 year old I had quality of life concerns about any dual therapy, or especially RP.

Boy I'm with you on ADT SEs!! So King did not claim that HDR was more effective than surgery, but believes you'll do better on SEs long-term? been a number of months since I looked at any such studies....don't trust my recall!!

King says the best radiation treatments are equally effective as RP. But Dimanes, a pioneer in HDR brachy monotherapy at UCLA (now retired ) , has studies that show its considerably more effective. The precise nature of the HDR brachy mapping and overall effectiveness of high dose rate makes sense. But King’s point is no one is right — there are no guarantees. At some point you have to go with your gut. Dimanes’ route required less treatment for me and no secondary therapy — King suggested my borderline status could merit ADT. So HDR brachy monotherapy was an easy decision in the end — both for its effectiveness and lower likelihood of untreatable side effects. I can confirm SE’s were surprisingly manageable to non-existent.

So, summarizing ......HDR brachy may be more effective than sbrt as monotherapy, and shown to have less onerous side effects. Correct?

There aren't as many studies for SBRT -- especially 10 year studies. I'd venture to guess ,based on what I've read and learned, it's got a good shot at being as every bit as effective as HDR brachy. There is only more evidence that HDR brachy is more effective based on how much longer it's been around. Dr. King is a brilliant doctor. So I'd believe him when he says that these treatments are the same. I also have a very good feeling that the side effects of SBRT are as marginal as those of HDR brachy. Reach out to Tall Allen directly about SBRT. He had a great experience with it, pretty much no side effects. I was leaning toward SBRT because it seemed less intrusive and my gut told me the same effectiveness. However, HDR brachy -- taking Dr. Dimanes' monotherapy approach -- was really the only pathway for me. Dr. Dimanes was the only Dr. I believed in who said that I absolutely definitively didn't need a second therapy. I should also mention that I met with Dr. Goy at Kaiser Permanente, LA. He is also all about monotherapy, based on his own studies. But he only treats with LDR seeds. I ended up going with a student of Dr. Dimanes for HDR brachy, Dr. Wong, out of Kaiser Santa Clara. It was in my health plan and I would highly recommend Dr. Wong to anyone interested in pursuing HDR brachy.

Hmmm...Kaiser in your area has HDR brachy?? But not SBRT?

Iask because I am also with Kaiser , but in Oregon, and I don't believe they offer either here. Hopefully they would agree to cover those if performed in a different Kaiser location....I'd sure try. Otherwise, my only paid access would be to sign up for Medicare Part B and a supplement..right now my wife has earned employer -paid coverage at Kaiser. I just spent too many months preparing a 100 page appeal for access to a fusion biopsy....Kaiser doesn't offer that either!! The great fear I've always had about Kaiser coverage> ther SOC can end up being standard OLD care!!!! like that? Thanks so much Curtis!!

You’re incredibly lucky if you have Kaiser because you can go get treatment at Kaiser Santa Clara under your health plan with Dr Wong. No cost. It’s a state if the art facility right next to Apple HQ in Cupertino. If I had the option to do SBRT under Kaiser, it’s not available, I’d still go this route based on how good my experience was with Dr Wong He studied and practiced the treatment under the guidance of the world’s leader in HDR brachy, Dr Dimanes at UCLA. My really only concern at first about this treatment was the worry about it being so intrusive. But the 10 year studies of its effectiveness as a monotherapy are really the thing to feel good about. Frankly, I found it to be a breeze compared to getting a biopsy. I was up and about and out to dinner the same day as my treatment.

Hi Atlantic,

I went the RP route at 70 and ended up with impotence and incontinence even though I had a wonderful surgeon. I also have been clear of the cancer for going on five years, so despite the difficulties I don't regret my decision. However, I did feel, as you said, that I was rushing to a decision, which in retrospect I probably could have delayed a bit longer, though I'm not sure it would have made a difference. Impotence and incontinence are a risk no matter how good the surgeon. But if you can take the time, take it and talk to those who have had the procedure(s) you're most interested in. Ask about their experience with their surgeons and ask the surgeon your considering about his/her record re impotence and incontinence in those he's operated on. I didn't.

Fairway

maley2711
maley2711 in reply to Fairway

I think even the "best" have incontinent patients after surgery...we can never be certain that a side effect would have been avoided with a different Doc!!

We can all cite our personal experience with the usual disclaimer "your results may be different." We ARE all different in age, in disease, in tolerance of risk and in tolerance of the unavoidable side effects of treatment--or of deciding against treatment.

My friend down in Maryland went with Active Surveillance thru Hopkins and was very comfortable with that until he developed Parkinson's disease. For him the effort of waiting out two serious threats on his health were too much so, after six years of AS, he decided to have treatment. He is happy with that decision.

I had G7 disease with no imaging evidence of spread. Scholz's algorithm said I should have RT but I chose RP instead. That was for me based on not wanting to tie my life down to 8 weeks of medical treatment visits and not wanting hormonal treatment before the RT. I remain happy with my decision, as I remain after 18 months without detectable PSA.

The surgery was in December. The incontinence was gone by April. The erectile problems remain. For me at 76 having a hard penis is not terribly important. I miss it, yes. I miss ejaculating, yes. But I still can be highly sexual and a good bed partner.

After surgery, the MO and the RO both kept pushing hormonal treatment..."too be safer, standard of care, etc." I pushed back, asking proof of HOW MUCH prolonged survival according to their studies. For ME, the few weeks of added survival were not worth the myriad side effects of hormonal treatment. I decided to take my chances, monitor my PSA and deny myself the "benefits" of loss of libido, loss of muscle, loss of mental clarity, loss of skeletal integrity, loss of memory, loss of energy, gain of cardiac risk, gain of cholesterol, gain of boobs, gain of body fat." All that in exchange for a few weeks of added life? No thanks.

My MO and my RO continued to push and I continued to note two things: they were all about survival (the only marker in the oncology world) and they were very dismissive of the side effects they would not have to live through. I concluded for me that survival alone was a bad metric.

I am always ready to go back to additional treatment if my PSA starts to rise. I know that it could start to rise at any time in the future. Life, however, is not accumulated months of survival. It is more than that and sadly, I do not hear about or read about, enough acknowledgement of that reality by the men and women who treat us.

Your results may be different.

Your pathway will be unique, as all pathways are.

You will feel different pressures from family and friends and doctors to do one thing or another. Keep as informed as you can and then decide what only you can decide. As Tall Allen and others have noted: this is not an emergency.

Gratitude for your question. Blessings on your journey.

maley2711
maley2711 in reply to dadzone43

Very much appreciated your comments on your experience. Do you happen to recall your Docs' responses re any additional life expectancy when adding ADT to radiation as a first treatment? Substantial enuf that you felt ADT would be needed with radiation? also, from what I'm reading in the year 2020, hypofractionated EBRT over 4-5 weeks, not 8-9, is new standard of care....and SBRT is also viewed favorably by a majority of radiation oncologists...ROs. congrats on your results to date!!!

dadzone43
dadzone43 in reply to maley2711

Right. In the 22 months since I was diagnosed, the radiation Standard of Care has shifted worldwide, though you may not know that from some ROs. In my case ADT was recommended to precede my RT because I was initially labeled "too old" for RP. SoC was again cited but the major study was not yet complete enough to give _specific_ survival data. The RO and the MO seemed to imply that saying "SoC" was enough. It was not enough for me, a combination of curiosity, scepticism and maybe a little stubbornness. So I waited them out until the study could give specific numbers for added survival from ADT+RT. For me, the added survival was not worth it. Others would probably make a different decision.

maley2711
maley2711 in reply to dadzone43

Thanks dadzone! Please clarify..... " So I waited them out until the study could give specific numbers for added survival from ADT+RT. For me, the added survival was not worth it. Others would probably make a different decision."

Didn't you have surgery, and they advised ADT after surgery, not RT...radiation treatment?

BTW, di they provide stats re outcomes for ADT + radiation, versus radiation without ADT. I'm very skeptical re choosing surgery for myself!!!

dadzone43
dadzone43 in reply to maley2711

It was in two phases. I was recommended ADT + RT after the diagnosis. Then I met with the entire team and learned that the surgeon did not consider me "too old" for surgery. I selected surgery. After that I met again with the team (MO, RO, SO). RO+MO then recommended "salvage radiation" +ADT, presumably because the pathologist saw tumor at the margins. SO argued that the heat from the cutting knife would kill any residual cells.

My question was: salvage from WHAT? Do I know that there is residual tumor? Do I need any salvage?

To address your questions: no they did not parse out the differences. I had to get the studies on line, read them and interpret them for myself. So I had to learn how to read survival curves.

Still a waiting game for me. If my PSA ever reappears I will have to reconsider my position. I do not regret selecting surgery. I did develop an incisional hernia and had corrective surgery for that this past January. Plus incontinence (lasted four months) and erectile dysfunction/ malfunction. Best to you.

maley2711
maley2711 in reply to dadzone43

Thanks Dadzone. 2 questions to clarify .......what is meant by " heat from the cutting knife would kill any residual cells." ????

also, did you pass on the salvage radiation plus ADT? Glad to hear mostly good surgery results so far!!!! was that open or robotic surgery?

dadzone43
dadzone43 in reply to maley2711

Surgery is the only treatment I have had. I have figured that if PSA stays down there is no need for any salvage.

With robotic surgery the cutting is done by tiny little scissors. The scissors have electric current and get hot to seal capillaries and limit bleeding. They cook the tissue. The surgeon believed that the cooking would kill any leftover cancer cells. I do not know if there is any proof of this. He believed it; I want to believe it.

It is understandable that many PCa patients and their families want to "do everything" to maximize chances for survival. I am not one of them. Survival at any cost needs to be weighed against effects and side effects of treatment. That is why for the time being I have declined salvage RT with or without ADT. Am I betting my life on this? I do not think so. PCa is not an emergency. If my PSA starts to rise I will have weeks to months to reach a decision about what to do about it.

maley2711
maley2711 in reply to dadzone43

Pretty much on board with your thinking...right or wrong??

dadzone43
dadzone43 in reply to maley2711

Everyone's situation is different/unique.

Many thanks for all the shares, very helpful in detail and specifics that are generally overlooked (both willfully & unintentionally depending on the specialist).

This site is truly a haven of quality information and hard won experience.

I sincerely take my hat off to you all and am immensely grateful for your support and presence.

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