Ok so it looks like I may be able to access SBRT if I categorically refuse surgery
and dig my heels in.
However, two ROs and two surgeons so far have said that in the case of treatment failure, options become much more limited. This is also relevant in case of recurrence or of any LN or SV involvement after RT as opposed to RP. There does not seem to be any involvement yet from biopsy TRUS images though they said they couldn't tell for sure until after surgery and tests for positive margins.
Just a reminder:
Gleason 3+4=7
7mm with signs of possible capsule contact (not yet extracapsular apparently)
Right apex
42 years old
I'm being told that I need to act very soon.
Any thoughts?
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Atlantic77
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For Atlantic77's benefit (he's a young man with many years ahead of him) I'm also going to refer to the 9 year outcomes in the other study that you cited inside the first one: pcnrv.blogspot.com/2016/08/...
Here are the 9 year numbers from that study, as abstracted in Allen's very useful blog post:
o 9-yr freedom from biochemical failure was:
§ 95% for low-risk men
§ 89% for intermediate risk men
§ 66% for high-risk men
o Median PSA nadir was .1 ng/ml
o No difference in biochemical control for the lower vs. the higher radiation dose.
o 99.6% prostate cancer survival
o 86% overall survival
I think these are excellent numbers and the intermediate and high risk numbers are better than what I've seen for surgery. If I'm right that Atlantic77 is in a low-intermediate risk category, this is giving him a 9 year freedom from biochemical resurrence (i.e., rising PSA) probability somewhere between 89 and 95%.
My feeling is that a 42 yo man might want to think twice about the idea of possibly living half his life with permanent incontinence (20% probability) and erectile dysfunction (45% probability with nerve sparing). For myself, even at 57, I could not bear the thought of living the rest of my life with that possibility.
My feeling is that a 42 yo man might want to think twice about the idea of possibly living half his life with permanent incontinence (20% probability) and erectile dysfunction (45% probability with nerve sparing). For myself, even at 57, I could not bear the thought of living the rest of my life with that possibility.
Is it the case that outcomes are crucially dependent on the SBRT skill and experience of the doctors, or is SBRT at the point where most practicioners can get these good results? I ask for people like me who live in small(ish) cities like, oh, Eugene, Oregon. It's a fairly well-equipped city from what I can tell, but...it's small. Portland is only a two hour drive, but is even it a place to find doctors who are skilled and experienced enough to produce such excellent outcomes? How can you find out before deciding on treatment?
I think the learning curve isn't as steep as for surgery, or even brachytherapy, but you want an RO and a physicist who has seen enough anatomic variation so there are no surprises. I was spoiled - I went to the guy who pioneered its use for prostate cancer, and his linac was only 10 minutes from my home. It is only 5 treatments, with a day between. I did F-MWF-M - so if you were to stay at a cheap motel 4 nights (MTWTh), you would only have to drive there and back three times.
It sounds like you've met four doctors now (two surgeons and two radiation oncologists) who are able to offer you treatment. Do you have any opinion of the doctors? Does one have a particularly good reputation among other doctors and patients you have met or been been able to find on review sites? Is there one that strikes you as more capable and committed to patients than the others? Are the docs offering you radiation treatment opposed to treating you and only offering it under protest?
I think the answers to those questions are worth considering in your decision.
Really appreciate all the pertinent information and the wealth of knowledge on this forum. It really is invaluable and empowering.
I attend a prostate cancer group here and there is nowhere near the amount of understanding surrounding prostate cancer treatment that can be found here. TA's blog is an amazing resource and should be made available to everyone diagnosed with PCa.
I think I am leaning more towards SBRT, unfortunately it doesn't seem to be as easy to get information on ROs capacity and experience re. utilisation of Cyberknife.
Here in France the treatment is fully covered by the state social security system so while that is a significant financial advantage, it can also make it harder to assess individual practitioners competencies and success rates.
Some of them can be quite arrogant and patronising and have a 'take it or leave it' attitude. My pluridisciplinaire team and personal urologist certainly are against me accessing 'la radiothérapie stéréotaxique' and are pushing hard for robotic RP.
It's not yet a given that I get access to this treatment and I think it would probably be the first time SBRT PCa is used on someone my age in this country as it appears that this technique has only been used on far older patients up to now. Not the same experience and skill as some of the doctors in the States.
On a side note, if there is PN or SV involvement, what treatment is on offer?
This is one of my team's arguments against primary treatment with radiation as it would not treat these areas, but surely neither would RP?
With SBRT, the proximal end of the SV (where they attach to the prostate) get a full dose, but the distal end (the rabbit ear side) gets a much smaller dose. That can be changed if there is any indication that the cancer has penetrated all the way through (stage T3b), but that is very rare for men who are GS 3+4. RP removes the SV entirely. For me, this was a benefit of radiation because I hoped to be among the rare cases where ejaculation is maintained after radiation (alas, this did not happen).
PNI is treated more with radiation than with RP - radiation treats a margin outside of the prostate.
I had a 15 year follow-up today with a radiation oncologist at the U.S. National Cancer Institute. They are interested in the long term results of their trials and are still following me and others. I asked the RO about SBRT and what happens if it fails. They are using SBRT in primary curative treatment trials, i.e. trials of SBRT on men with no previous treatments, in the hope of curing them. She said that attempts at salvage treatment after a failure are still experimental. She agreed with the conventional wisdom that surgery after radiation is problematic. There is a very good surgeon at NCI whom she said will attempt it, but only in select patients who are in good condition. At NCI they have attempted focal SBRT in attempts to salvage SBRT failures, but that too is experimental and they don't know yet what the success rates will be. They only do it for promising cases and will not try it a third time. She thought cryosurgery and HIFU were practical choices for salvage after failed SBRT, but success rates are not high.
Success rates for salvage radiation after radiation have been at least as good or better than salvage radiation after failed surgery (which is around 50% successful). NIH is running a trial of salvage whole gland SBRT after radiation failure, and good results have been reported among those who've tried it. A few sites have tried focal salvage SBRT.
I'm sure results will improve with better patient selection as a result of advanced PET scans, and targeted prostate biopsies.
It is also worthwhile to note that the percent of recurrences that are local only after intense prostate radiation (SBRT or brachy boost) is very low (probably about 20% of such recurrences), while the percent of recurrences that are local only after conventional prostate radiation (IMRT or proton) may be around 50%.
I've met several "hot-dog" surgeons who claim they can do salvage surgery after radiation failure without inducing serious morbidity. But why would anyone chance it when there are much better alternatives?
Thanks for the info. Maybe I misunderstood what the RO said about focal SBRT. Perhaps she was only saying that the trials of focal salvage treatments were particularly interesting, not that whole gland treatment was impractical.
I see that you have gotten many responses that have provided much information. However, I did not see responses that addressed your question of what options do you have should SBRT fail.
I have had failed radiation myself. I was offered cryo and surgery as salvage even though the latter is more difficult after radiation. But, what I actually did was Tulsa Pro ultrasound ablation. This is a new option recently approved in th USA but is also done in Europe. It involves ablating tissue while being monitored in real time via MRI so as to make sure temperatures are sufficient to kill the cancer. Mine was done in Finland but it is also done in Germany.
My 6 month post treatment MRI showed only necrotic tissue in the treated area. My erections are attainable and I have no incontinence. Granted, a few cancer cells might still be there but so what, the radiation missed them as well. Surgery might have done the same.
This is also available as primary treatment.
In summary, all options can fail. SBRT is a good choice and there are treatments that can be had if it fails. Surgery works for some but I have never considered it for my 4+3 as the sexual and urinary side effects were not for me. Were I seeking primary treatment today I would do Tulsa Pro but would do SBRT as a second choice.
TA wrote: "My feeling is that a 42 yo man might want to think twice about the idea of possibly living half his life with permanent incontinence (20% probability) and erectile dysfunction (45% probability with nerve sparing). For myself, even at 57, I could not bear the thought of living the rest of my life with that possibility."
At 65, I had SBRT. I'm about a month out, and side effects are abating. (Gleason 3+4, 2 cores 40%, PSA 7 no PI or SV according to imagery) If I had been 42, not 65, I might have taken the advice of some of the top surgeons I talked with, who advised RP, the traditional, preferred option for _younger_ prostate ca patients w/ intermediate risk disease. It is a risk/ benefit decision that only you, the patient, can make because you have to live with the decision for the rest of your life.
You may want to consider ablative options including the newly approved TULSA Pro (not yet widely available, but soon), because these options may also be available for recurrence or, in the case of recurrence, before radiation.
The difficulty, in terms of options, is that once you go the radiation route, you will not be a candidate for RP surgery. Like TA, I decided on SBRT over RP and for similar reasons: risk/ benefit.
Yes, really consider the probabilities for permanent incontinence and ED. You'd do better with SBRT or TULSA Pro. You won't lose your erections.
But very likely, certain if it's surgery, you will lose the ability to ejaculate. So, whatever you choose, be proactive and enjoy that cum right up to the time of procedure.
If you have ADT prescribed, ascdo 45% of men undergoing OC treatment, that's a whole nuther thing -- to get through it in good shape, you need to have a good ED device on hand to help you keep those erections going, going, going. Which will be very difficult, because your libido is being put to sleep by the no-T environment, and you won't vevibterestedmuxh in sex. It's very weird and disorienting for a man to experience this.
The devices that just came out are both looking great: Giddy, lije a cock-ring only much better, and Xialla which pulls back and exposes more usable shaft while drawing the scrotum back.
I have instructions for creating the Loop, a universal ED device you make yourself. And it's practically free.
Update. I have searched tirelessly and it seems that here in France they are unwilling to grant me access to SBRT treatment due to my young age profile. I am being pushed towards robotic RP.
I wonder does anybody know how to access SBRT through clinical trials for localised PCa here in Europe?
I am now at a stage where I'm going to make a decision very soon on treatment. I have seen a lot of specialists in all areas and they all are strongly encouraging me to go for robotic RP.
Their arguments in favour for surgery are:
- my young age
- likelihood of my tumour being of the more agressive variety as it evolves as there are already suspicions of EPE
- the lack of long term toxicity and efficacy data on SBRT ( ie. more than 10 years down the line )
- the high probability of increased complications should salvage treatment following SBRT be necessary 15 or 20 years from now
However, I have finally found a RO who said he would be able to treat me with SBRT ( using Truebeam rather than Cyberknife) should I refuse surgery.
I know that its my decision and that nobody can make it for me but I do appreciate all your different perspectives and thoughts from personal experience - it gives me the sense of making a more informed and wise decision and serves to lessen the anxiety somewhat.
I hear those arguments from urologists so often - allow me to refute them:
Young age: a totally bogus argument. Younger men do better with any kind of treatment because their repair mechanisms are better - that is true for radiation or surgery. On the other hand, a younger man who suffers incontinence or impotence has more time to suffer those consequences - years when he would otherwise expect to have full continence or potency.
Aggressive/EPE - that is an argument in favor of radiation, not surgery. Radiation is contoured to the shape of the prostate, including any bulges, and treats a margin outside of the prostate that surgery can't reach. (SBRT usually allows an extra 3 mm, except at the rectum). Or if the surgeon has to "cut wide" because of it, you will permanently lose potency and have impaired continence. Dr. King, who has treated 400 high-risk patients with SBRT tells me (unpublished) that there have been no local failures. Local failures (in the prostate bed) are much more common with surgery.
10+ year toxicity data - true, but it is also true that (contrary to rumor) if a side effect of radiation is going to occur, it will almost always crop up in the first two years. You can see this in the patient-reported outcomes of the ProtecT randomized trial:
Salvage treatment- another bogus argument - salvage treatment after radiation actually has less toxicity than salvage after prostatectomy. Urologists don't know this, because from their limited point of view, the only salvage is salvage surgery. Look at the table at the end of this article:
There are valid reasons to choose prostatectomy over radiation, especially if psychologically the pathology report is important to you and waiting for PSA to reach nadir will drive you crazy. Also, there are sometimes physiological reasons - (e.g., large TZ tumor). You should ask yourself these questions:
Patients who chose radiation has a bias for radiation. I choose surgery and have bias for surgery. Here are some thoughts with surgery bias:
Younger men live longer and therefore have a small risk of secondary cancer caused by the radiation.
Incontinence and impotence is a quality indicator of the surgeon. Chose the best!
Regarding Ultra Hypofraction (SBRT) radiotherapy with > 3.4 Gy per fraction. The uncertainties of the long-term outcome must be communicated to the patient in Europe.
If salvage radiation after RP is needed, is also a quality mark of the surgeon, not the method.
My main argument for surgery was the pathology report, to know the true attribute of the cancer and end guessing - up-and downgrading from the biopsy report is not uncommon.
There is no inherent bias, we chose the treatment we chose because the risk/benefit profile more closely matched what we wanted. In my case, potency preservation was very important (given equal probability of cure), so SBRT was an ideal fit.
You are right to characterize the risk of secondary cancers as small - it is very small:
IMHO, both are so small that they are not worth mentioning.
An experienced surgeon is very important. But even the most experienced surgeons cannot compensate for the neurovascular damage and the damage to sphincter muscles caused by the cutting.
For me, I did not care what had been in my prostate, as long as I was cured, so the pathology report was irrelevant. If I'd had surgery and the path report was poor, and my PSA rose, I'd need SRT. If I'd had surgery and the path report was good, and my PSA rose, I'd still need SRT. So the path report doesn't really make a difference to the SRT decision - rising or persistent PSA does. And biochemical recurrence has been known to happen 25 years after prostatectomy.
Is PC unique related to that the patient selects the treatment options? If one method of treatment were clearly superior, it would make the decision easy. Everyone should have that treatment. Since cure rates are equivalent, however, each man should consider his options and decide which treatment he want (or more realistically, which treatment he would least mind having). Few men seem to regret their decision. Those who regret are the ones who let their doctor decide, am I right?
Well said! And I think you are right that prostate cancer is unique in its array of doctors. My experience with other cancers is that one sees an oncologist who brings in other specialists as needed. When men with localized PC try to bring in an oncologist as "quarterback" it only creates more confusion because the urological oncologist doesn't know much more about surgery or radiation than the patient does (or can learn by talking to specialists). It gets even more complicated because of the specialization of radiation oncologists - a specialist in brachytherapy, for example, may know little about SBRT. When I was deciding, I met with 6 different specialists (SBRT, HDR brachytherapy, protons, an active surveillance specialist, and 2 surgeons) and took 6 months to decide, all the while doing my own research.
Greatly appreciate the comprehensive and informative response, it is very helpful.
In France there does not seem to be the same competition for patients, and the consequent inherent bias for each consultants area of expertise, as appears to be the case in the US. I've had the 2 top ROs in this country suggest I opt for surgery.
The main argument for RP over RT re Aggressiveness/EPE is not so much the actual treatment of the EPE itself, but rather the likelihood of recurrence in a profile so young with a tumour which seems to be already on a path of exponential growth and ever increasing aggressiveness. Apparently a prostate so prone to PCa at a young age would have more probability of BR further down the line. This is the real issue in my case which would not apply to most men getting treatment in their later years.
Its not an easy decision but at least with the help of people like yourself and this site one has all the information possible which is so vital and allows for due diligence.
I wonder what your thoughts are on Truebeam? My RO informed me that the advantage it has over Cyberknife is reduced treatment time for each session and that there may be no need to place fiducial markers.
However, he does seem to be in favour of SpaceOAR so I sent him one of your articles on the subject ( 'Is the difference worthwhile').
Coincidentally, he's in the process of writing a paper on SBRT (I can't remember the specifics of the study).
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