I had my prostatectomy on June 3, 2019. I had been under active surveillance starting in 2014. My PSAs typically ranged in the 5s for three years until it got to the low 6s in the fall of 2017. Finally it broke out of the low 6s in November of 2018 when it hit 7. Right before my prostatectomy it was 8.3. My Gleason was a 3+4.
The pathology report said the tumor was T2 with positive margins but it did not reach the edge or shed cells (not sure about this but that was the best I could find). All of the 12 lymph samples were all negative.
My PSA was 0.02 four months after the prostatectomy in October 2019. It was 0.03 in January 2020 and by October 2020 it got to 0.05.
I am going to have radiation now. I have two decisions to make:
1) 7 weeks of Photon or Proton radiation?
2) Whether to do 6 months of ADT with the radiation?
I am leaning toward an answer for both but would like others advice and experiences, especially regarding the ADT.
Looking forward to what others have to say.
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cyber1
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Photons or protons seem to afford the same results, in spite of what the proton advocates claim without proof. The Bragg peak is just an interesting theoretical phenomenon. In practice, photons and protons seem to have equivalent toxicity. Most insurance will not cover the extra cost of protons.
What you should consider during the pandemic is hypofractionated SRT. It can be completed in 20-26 treatments instead of 40-44 treatments, with no increased toxicity.
If you are convinced that you want protons, there are clinical trials of hypofractionated salvage proton therapy too.
As for adjuvant ADT, you don't need it. It has been only shown to benefit those whose PSA > 0.6 at the time of SRT. Your low Gleason score PCa should be easily cured by salvage radiation alone.
Regarding Proton vs. Photon. Both the Photon and Proton radiologist said the same thing. It really does not matter, but theoretically the long term possibility of a secondary cancer is less with Proton. The Photon center is 15 minutes away and the Proton is 40 minutes away. Both are fully covered by my insurance (Medicare and Blue Cross). I am 67 and in great health otherwise and enjoy working out and have young kids still at home. Going skiing in Colorado over Christmas break with my kids and brother.
The bottom line is both radiologists said the same thing. The proton radiologist said if getting treatment using protons meant significant out pocket expense compared to photons he would not recommend to his own brother to do proton. But since both were free he thought protons were worth considering.
I asked the proton guy about SBRT but he said they don't do that after a RP. I did not ask him about hypofractionated SRT. I will do that as well. I think he said the dosage would be 70.
From what I am reading the choice is more about who is the better doctor/technician because it is all about the aim. The proton center is very new and does the newer version, pencil beam proton.
I figure I cannot miss with either (no pun intended).
My bigger question and the reason for my post initially was really about the ADT, which you interestingly essentially dismissed out of hand. Here are the opinions I have so far:
- Both radiologists said they would not do ADT
- My surgeon (extremely well respected and top in the field) and my urologist recommended ADT for 6 months. Their attitude was why would you not do everything you can to try and stop this? Their attitude was, if in five years it starts to come back and I don't do ADT now I will regret not having done ADT and if it does not come back and I do ADT I will know I did everything possible and that might be the reason it did not recur.
I did meet with a fifth oncologist who went over the 9 side effects of ADT and he was very clear that the current research shows it helps for high risk patients. He said that the evidence was not there for patients such as me, but he thought it was worth doing. I discount his opinion because he is the doctor who administers ADT and does that for a living unlike the other four doctors I referenced.
In a follow up meeting with that doctor he said instead of taking the ADT in two shots 3 months apart he could give it to me in six 1 month interval shots and if the side effects were bad enough I could stop at any time.
So I was thinking about trying it for 1 month, then if I am feeling okay do a 2 month dose and then finish with a 3 month dose assuming I can handle it. He did not offer this exact option, he said 6 one month shots, but I figure if they can do 1 month and 3 month dosages they can do 2 month dosages. That would mean I would do 3 shots instead of 6 which sounds good to me.
But based on your response and having spent the last couple of hours reading about the side effects of ADT on this website, it is definitely influencing my opinion. Maybe I should just forget the ADT all together.
It doesn't surprise me that a urosurgeon and a urologist recommended ADT with radiation. That is like asking my plumber about electrical wiring. It doesn't matter how good the plumber is, he just doesn't know diddlysquat about electrical stuff (although he probably has an opinion).
On a side note, I am curious what you think about this. Given your reply I can guess.
Both the surgeon and the urologist said they would lean toward photon because it does cause some collateral damage (which might lead to a secondary cancer which as you said is extremely minimal but it is a probability) and in this case the collateral damage is actually good because it might get some of the cancer cells. In other words, if the cancer has spread a little outside the prostate bed they might be killed where with proton those cells would not be damaged.
When I mentioned this to the proton radiologist he lost it. He was so mad because he said they don't know what they are talking about and that idea was nonsense.
As I mentioned earlier the photon radiologist was completely neutral on which type of radiation is better, but I did not ask him about the above theory regarding why photons might be actually better than protons in treating my cancer. However, if he thought photons were better (especially given that is what he does) he would have told me and he did not. He gladly referred me to the proton radiologist.
When they plan the treatment area, they know exactly, down to the millimeter, how much radiation is delivered and to where it goes. They already plan to treat a certain margin around the prostate bed to get every last bad cell. Putting any kind of radiation where it is not needed creates toxicity. It is toxicity (not secondary cancers) that is the real concern. Prostate cancer is one of the more radioresistant types, so it takes quite a bit of radiation to kill it. Sub-lethal damage doesn't kill cancer cells, but it may damage healthy cells, adding to the toxicity of treatment.
I have nothing against protons (or SBRT) used for salvage radiation treatment, but you should be aware that their use for this purpose is highly experimental. That means there is just no published data by which to assess their efficacy and toxicity. Even moderately hypofractionated salvage radiation is experimental, and is not considered standard of care for salvage RT. It is being recommended now by a panel of expert radiation oncologists only because of the pandemic.
So my thought that proton is advantageous over photon due to less risk of secondary cancer development is really not an issue (maybe 2 or less per 1,000), but the possible collateral damage of photon radiation is something to be considered because especially compared to pencil beam proton therapy, photon therapy is more likely to cause damage to the bladder or rectum. Is that what I should be considering?
If that is true, is there a reason to think proton therapy is less likely to kill the cancer cells in the prostate bed? You said proton therapy is still considered experimental, but both the proton and photon radiologists I spoke with never mentioned anything about proton being experimental. Like I said, they both said they were essentially equal in killing the cancer cells in the prostate bed. I thought the only real possible advantage to proton therapy had to do with it theoretically being safer to the other surrounding tissues, even though there is no evidence yet supporting that theoretical claim yet.
Is that a fair summary?
Does it matter that I can get pencil beam proton therapy vs. 'regular' proton therapy?
Bottom line, which radiation would you do given my or Justfor's situation, ie. low Pre-SRT PSA levels?
Do you know much about the MRI guided SRT? It sounds really interesting, if for no other reason it would be less damaging to the surrounding tissues.
"photon therapy is more likely to cause damage to the bladder or rectum." I have no idea why you think this statement is true. So far, the toxicity seems to be about the same:
"You said proton therapy is still considered experimental..."
No, I didn't. I said it is experimental as a salvage treatment.
"Do you know much about the MRI guided SRT? It sounds really interesting, if for no other reason it would be less damaging to the surrounding tissues."
You are again wrongly assuming that it is "less damaging." I'm very familiar with it. Whether or not it is less damaging has yet to be proven. It is new.
"Does it matter that I can get pencil beam proton therapy vs. 'regular' proton therapy?" As I said, it is experimental as a salvage treatment. There has never been a comparative trial. Just because something sounds good, doesn't mean it actually is. Try to avoid jumping to unfounded conclusions.
I got the idea that proton therapy theoretically does less damage to collateral cells based on a number of articles I have read including this article from John Hopkins:
"One key difference between X-ray or photon radiation therapy and proton therapy is already known. It goes to the very core of why proton therapy is beneficial. It’s not that it kills cancer better; it’s that it damages normal cells less. Photons pass through the cancer and out the other side, so on this exit, they hit normal cells and tissue. Proton therapy, on the other hand, stops at the tumor. There is no exit dose.
“Conventional photon radiation therapy and proton therapy cure tumors at the same rate,” explains Viswanathan. “The side effects they can cause are similar, but with proton, less dose goes to normal cells, and that’s the benefit.”"
As I have said, the advantage is theoretical and at this point it has not been shown with a RCT.
In that same article it talks about the advantage of how protons kill the cancer cells compared to x-rays. It said:
"“Protons damage DNA directly, and that type of damage is harder for cells to repair,” says Laiho, whose research focuses on understanding the benefit of combining radiation therapy with drugs that further cripple cells’ ability to repair DNA damage. “If we combine proton therapy with drugs that inhibit DNA repair pathways, the interaction will likely be greater than what we see with photons.”
Again this has not been shown yet through RCT but the researchers know the mechanism and based on what they know it sounds to me that the protons should be even more efficient than x-rays (photons) IF they combine protons with 'drugs that inhibit DNA repair pathways'. I have not heard the radiologist talk about this drug so I am going to ask him about that tomorrow. I wonder if that drug is ADT
Finally, I am curious about your statements that protons are highly experimental for SRT. Does that mean protons are not experimental for primary treatment for prostate cancer? If that is the case why is it considered experimental for SRT? Is it because there is no RCT showing how well it works? It seems like if it works for primary treatment it would also work for SRT. Is there some reason that might not be true? Just don't have the experience on all of these studies that you do so trying figure out if it is worth trying or not.
Theoretical benefits often do not play out in the real world. Wishful thinking is not something to base critical decisions upon if it can be avoided. I'm not criticizing you for being misled. Those who have invested heavily in some very expensive machinery have a lot to gain by misleading patients. I'm not saying it's worse, but there is certainly no factual evidence that it is better.
"Does that mean protons are not experimental for primary treatment for prostate cancer?"
No, it is not. Protons have been used for prostate cancer treatment since 1990.
"If that is the case why is it considered experimental for SRT? Is it because there is no RCT showing how well it works? It seems like if it works for primary treatment it would also work for SRT. Is there some reason that might not be true? "
Salvage radiation is an entirely different animal from primary radiation. Without a prostate in place, there is nothing to impede the radiation damage to surrounding tissues or to the anastomosis, so toxicity is quite a bit higher. Also, image guidance is less robust and the soft tissue moves a lot. Particularly for protons, because of the Bragg peak, it may not be ideal for treating such a wide area. When whole pelvic radiation is given as part of primary therapy or for salvage (see the clinical trial below), X-rays are usually used, with protons only used to boost the dose to the prostate. If protons can be used for salvage, its efficacy and safety have yet to be established. There is little data at all, let alone the kind of long-term data that would be needed to determine those things, so it is experimental.
If you want to be a guinea pig, here is a dose escalation clinical trial (not randomized) that you can enroll in at UF Jacksonville. At least with a clinical trial, they are required to disclose the risks, and they monitor you more closely.
"He was very clear that the current research shows (ADT) helps for high risk patients. He said that the evidence was not there for patients such as me, but he thought it was worth doing." It's sickening that person with a license to practice medicine would say that. "We can cut off your left hand. It won't help, but it's worth doing."
Given that there is no evidence that ADT will benefit you, then yes, forget about it. It's an extremely unpleasant experience and has nasty SEs to your bones and cardiovascular system.
I don't want to misrepresent what the doctor said, he did not say ADT would not help in my situation (not high risk). He was clear that they just don't have the evidence they have for high risk patients. He said it might help more than for high risk patients but it might help less. He also spent a considerable amount of time going over the nine side effects. I think he was being as unbiased as he could be.
TA - Any updates to your 2016 article on Hypofractionated Salvage? I enter SRT after the first of the year and forwarded my RO your article for discussion. Any more success with its use during COVID?
Almost same PSA trajectory here. RP 10 days before yours. 0.02 until the end of 2019. Linear advance since then. November count 0.06. I am taking monthly tests as I am higher risk GS9 pT3b. My plan is to keep monitoring until 0.1 which, at this rate will probably happen before summer 2021. Then some weeks on Casodex and PSMA PET/CT. Irradiation according to the findings. Will probably continue Casodex during irradiation but definitely no harder stuff. As to the type/machine I try to get accepted for treatment on the new MR guided machine the Elekta Unity. Plan B is proton or carbon ions,,very trendy in Japan - I am in Europe, but this will be decided upon the PET scan findings
Interesting. My surgeon said given the trend why not do radiation now. I don't know anything about the new MR guided machine, sounds interesting. Given our prostates are gone and there is just a bed left the target is certainly not huge and the bladder and rectum are right there.
Now I am thinking of this whole situation like a sharp shooter competition. What determines who wins a shooting competition? The type of gun is important (type of radiation) but compared to how well the person aiming the gun is (the doctor or technician), the gun means almost nothing. Now add to that how well can you see the target in the first place? You could have the world's best gun, the world's best sharp shooter, but if that person cannot see the target, does it really matter? That person will not win the competition.
I know they talk about trying to come to each radiation session with the same amount of fluid in the bladder and they are putting a balloon in the rectum to keep things in a given spatial configuration, but even then it seems kind of like shooting in the dark. This MR guided machine sounds cool.
Regarding the Casodex. I read a little about it, it sounds like a form of ADT but instead of a shot you take a daily pill, is that true? I don't think that is a common treatment over here. Hmm... What is the advantage or reason for that I wonder? Is it a milder from of ADT?
Thanks for sharing and I hope it works out well for you Justfor
IMO the competence of the "shooter" is, in our days, a trade's myth. Planning is done via the software and the latest and greatest machine comes with matching software. I am not saying that the software can turn a blind shooter to a winner, this is obviously not possible, but the opposite holds true. A good shooter is as good as his gun. The problem arises by the lack of planning follow-up. They just do one-off planning and you are supposed to be in the same condition for the 35-40 fractions that follow. The next best thing is when they take some x-rays before irradiation and they will not proceed if gross mismatch with the initial planning is detected. But, if you are a bit out, what will they do? The latest machine-software combos can do the re-planning on the fly. So far so good, now the fine print. There is a handful of MRI guided machines and because of its accuracy they use it in cases that would otherwise be treated with SBRT. A kind of Cyberknife without fiducials. If the SRT is a wide swipe of the prostate bed, they will not. The same applies with pencil beam proton machines. If there are specific targets, like lymph nodes, they will. That is the place a PSMA PET/CT falls in.
Regarding Casodex, it is believed, not confirmed, that in the beginning increases the PSMA excretion of the cancerous cells, thus improving the detection rate of the PET scan which at this low PSA is 50-50%. Trials with another lutamide (same family) have confirmed this. As an ADT is milder with less side effects.
Wow, okay this is a lot to consider. First, in our condition, PSAs around 0.05 but a steady rise there is no question there is cancer somewhere but apparently because this number is so low they don't know where it is because it is such a small quantity that they cannot 'see' it at this point in its progression. I was told it could be quite a while before the doctors would be able to see the cancer and know where to aim the radiation.
So if I have this right, when your PSA hits 0.1 you will get the best possible detection tool available on the market today, apparently a PET/CT scan (noticed the first time you referenced this you included the CT and the second time you did not, not sure if there is a difference), and use it to hopefully be able to see the cancer cells (with the help of Casodex). If you can see the cells you will use MRI guided radiation, if you still cannot see the cancer (that 50-50) you will use proton or carbon ion which I guess means they cannot be targeted at the cancer cells, instead those two types of radiation would just cover the entire prostate bed.
In your response you said, "If the SRT is a wide swipe of the prostate bed, they will not. The same applies with pencil beam proton machines. If there are specific targets, like lymph nodes, they will. That is the place a PSMA PET/CT falls in."
I am assuming the 'they will not' in your quote means 'they will not use MRI guided radiation' because there is no reason to be so targeted given you don't know exactly where the cancer cells are because the PET scan came up empty. But in my mind there is still reason to be so targeted because you don't want to damage the bladder or rectum which are right there. The targeting that is provided by pencil beam proton SRT does not kill the cancer cells better, it just helps reduce the collateral damage to those organs.
You then said, 'The same applies with pencil beam proton machines'. which I assume means, just like you don't use MRI guided radiation if you cannot identify its location of the cancer cells, you would not use for pencil beam proton radiation either. However, that is not true because the place I would get my proton therapy uses pencil beam for my SRT and they are not going to target my lymph nodes, only the prostate bed.
When they described the way they do their pencil beam radiation it made sense to me because as I said before, you want to limit the damage to the bladder and rectum. So the pencil beam precision is not being used because it can precisely hit the cancer cells since you don't know where they are, instead they are covering the entire prostate bed just like normal photon radiation, but by using pencil beam proton radiation it will limit the impact of the radiation on the bladder and rectum.
Does that make sense?
Second, let's assume when your PSA gets to 0.1 you 'see' some cancer, does that mean you see it all? My guess is no. My guess what you would see via the PET scan are only those clumps of cancer cells that have grown big enough to see with the PET scan, but other smaller clumps that are contributing to the PSA level are still too small to see and therefore would not be radiated. I am guessing again, but even relatively small PSA readings of 0.05 still need millions of cancer cells to produce that much PSA. Our body creates about a million cells every second and there are about 40 trillion (40 million millions) cells in total. So my point is, it seems like there is no way you can kill all of the cancer by targeting only those clumps of cancer cells that are just barely big enough to see, it seems like some will escape a targeted attack so to speak.
Does that make any sense?
There is a facility in Los Angeles that uses MRI guided radiation, I am going to call them tomorrow and see what I can find out. See if they use MRI guided radiation in our situation.
Like I said originally, when I asked the proton radiologist if they did SBRT for our situation (SRT on people with low levels of PSA) he said no, they only use it for primary treatment. I still don't understand why not, but that is what he said. I am going to ask him tomorrow if they use hypofractionated SRT with their pencil beam proton treatments which is what Tall_Allen suggested.
Thanks for the ideas, this is really helpful. However, I feel like a ping pong ball going back and forth between proton and photon, ugh, and now something like MRI guided, real time tracking, really adds another dimension to think about. It seems like that type of real-time precision would help protect the bladder and rectum and that alone would be a reason to use it.
Well, if you radiate blindly the scope is to cover a wide area distributing the allowable radiation evenly. If you have a/some target/s, even suspicions for them, you distribute the total dose unevenly. It is called dose painting from the computer on screen visual where the level of radiation is depicted in colour grades plus superimposed iso-dose curves. But, you always leave something for the not-suspicious areas. The other "advantage" of the PET/CT (PET for short) is that if a focus is detected outside the intended area, this by itself makes the whole sRT treatment redundant. This is not at all uncommon as it sounds and one of the reasons for 50-60% of sRT ultimately failing, leaving you with the side effects. There are a number of papers indicating that a PSMA PET/CT affected the RT planning from just a refinement touch to a complete no-go. Regarding the MR guided machine you intend to inquire, which I guess it will probably by the US made Viewray, be advised that they are in this market for many years now, starting with Cobaltium as their source of radiation. With the years they have improved the design, now they use linacs as any other machine, but it will be good to inquire the model they have i.e. its manufacturing date. The same applies to the proton machine. A focused beam can cover an area by sweeping back and forth (like the tube TV displays of the past). I do not know if in doing so they can fast-modulate the intensity as to perform dose painting. A good point to ask. Here in Europe such expensive machines are found in key public hospitals, so "I am a paying customer" doesn't count. They have their norms. In private institutions you can have what you can pay for. You got it right, the ultimate aim for choosing such a machine is to protect the organs at risk, the side effects of which will become evident in a couple of years.
You wrote: "... but by using pencil beam proton radiation it will limit the impact of the radiation on the bladder and rectum. Does that make any sense?"
So and so. They first have to know where the bladder and rectum are at the specific time. Unfortunately, both organs move. That is a shortcoming for both technologies. In an equal to equal basis proton is better than photon because of less spillage. What I mean. One of the trick of photon is IMRT, that is, shooting from different angles in an effort to scatter around the stray irradiation. This is easy with photon because the linac is not bulky and the energy can be more easily guided around. With proton the generator is the size of a factory. Modern gantries have the ability to move the focusing assembly of the beam which this time doesn't guide pure energy but accelerated particles. Legacy ones, used only two shooting positions. To give you an engineering parallel you need electricity for your house. Two ways for getting it: a) Via a power cable from the utility. b) Via hydro power (they will bring a large water tube to your house to turn your hydro-generator).
The key point with technology is to have access to the latest make. We are having MRIs at 3T machines and think that this is something. There are already 6-7T machines deployed and some beta testing units at 13T. If only we could have access.
As for the rest, you got it right. Keep us posted.
There is a book "YOU CAN BEAT PROSTATE CANCER" by Robert J. Marckini talking the use of Proton Therapy to beat prostate cancer. You can get it from Amazon.
Just looked at the book. Too bad I did not read it before my prostatectomy. I live in the area described in the book (San Diego) and the Proton center I am considering is even more modern than the one described in the book. Unfortunately I was unaware of Proton therapy when I chose surgery. I did consult with a photon radiologist before choosing surgery, but was unaware of proton therapy at the time. Getting proton therapy would have been so easy for me given where I live.
I know everyone is different but the surgery did not work for me as my biochemical recurrence shows, but it also cut nerves and I no longer have any ability to become hard. I am okay with that but given the choice of Protons and what I have been reading I might have chosen that at the time. No going back.
Now the question is, should I do Proton therapy for my salvage radiation treatment?
Tall_Allen says it is highly experimental for SRT, unlike the example in the book where protons were the primary treatment, so it makes me wonder which is the best option, photon or proton but I appreciate the reference.
I keep going back to the recommendation of both the photon and proton radiologist who both said it does not really matter which I choose, so I really think which ever way I decide it will be fine. I just hope I get luckier this time and I either get a cure and/or less long term side effects.
1) "A target underdosage caused by anatomical changes occurring during the reported time frame for adaptive replanning MR-linac workflows was found. Volume changes in both bladder and rectum caused large prostate displacements. This indicates the importance of thorough position verification before treatment delivery and that the workflow needs to speed up before introducing margin reduction."
2) "Prostate MRgART can be delivered using the a high field MR-linac. Radiotherapy performed on a C-arm linac offers a good solution for prostate cancer patients who present with favourable anatomy at the time of reference imaging and demonstrate stable anatomy throughout the course of their treatment. For patients with critical OARs abutting target volumes on their reference image we have demonstrated the potential for a target dose coverage improvement for MRgART compared to C-arm linac treatment."
Note: This is a comparison of re-calculating the plan of a conventional RT at the start of every fraction. It still gives a slight advantage to MRgRT as the tissues move during the 30-35 minutes of treatment duration. Imagine what happens with one-off planning.
But, the most important thing you have to remember:
In war, if you don't know were the enemy is hiding, in personnel level you use hand grenades and on a tactical level Napalms. If you know were the enemy is located, you use snipers and GPS guided missiles accordingly. In war also, the dogma hit them with what you have, is the desperates' choice centuries now. In modern wars intelligence is dictating where to hit, when and with what.
To bring this into context: Photon = hand grenade, Pencil beam proton = sniper, Intelligence = PSMA PET/CT.
Also:
(photon IMRT) vs (proton Bragg effect) -> debatable.
(photon IMRT) vs (proton IMRT + Bragg effect) -> no brainer.
I am a little slow. If I hear you right, you think that Pencil beam with IMRT vs photon IMRT, which I believe are my two options in my area, unless I decide on UCLA which is like 2 hours away, is a no brainer because the Pencil beam with IMRT is superior, because of the IMRT which makes it more accurate.
I am still worried about getting the the most radiation possible in the prostate bed instead of the surrounding tissues and it sounds like the MRI guided system is the way to go if I can get it.
But you think that if I cannot get the MRI guided treatment you would go with the pencil beam if it has IMRT (I am 99% sure it does but I will check).
No, you are not slow, you are seeking acknowledgment. All high grade computer implementations work under this principle. They write a chunk of data onto the storage, then they read said chunk off storage, compare the two and if the latter passes successfully they go on with the next chunk, and so forth. A relatively slow process, but slashes errors to zero when the data is of high importance.
For whatever it's worth, I've found Tall Allen's advice to be "spot on."
Re ADT: read some of the posts here regarding different men's experience of it. Some are lucky and their experience of the side effects is unremarkable. Mine was awful. That shit did me in. If you can avoid it...
As of this morning I am leaning toward no ADT. I sent the oncologists who would oversee my ADT questions over the weekend. I will see what he says.
My main idea as of now is, if I try it, I will start with a 1 month shot and see how it goes. If it destroys me I will quit, if it is tolerable I will go with a 2 month shot and see how that goes. If I am still hanging in there after the first three months I will do one more 3 month shot.
One of the questions I asked him was whether the side effects generally get better or worse over time. I figure he is going to say it depends, but just curious.
Yes, most docs that I've encountered use the "everyone's different" response. I've always thought that was a cop-out response. While it may be true to some degree, there are patterns and typical responses to medical procedures.
Remember that ADT may change your life in dramatic ways; its side effects are numerous and wide ranging. Suggest you read "Androgen Deprivation Therapy: An Essential Guide for Men with Prostate Cancer and Their Loved Ones." It's an easy read and provides a lot of good info about what to expect and how to deal with the side effects.
Okay, bought it. Will be here tomorrow. ADT is really what I am more concerned about. I figure either photon or proton radiation will be comparable and needed (although some think I am doing it too early) because I figure the earlier the better, like with adjuvant therapy where the research shows it is beneficial. I figure my SRT is almost adjuvant at this point so why not. I figure it is worth it.
I thought the same thing about ADT when my surgeon recommended it along with SRT. Why not it will only help curing the cancer. Now I am having major second thoughts, especially after both of my ROs (photon and proton) said they would not do ADT. I also had no idea how bad the side effects were, even when the ADT specialist doctor reviewed all nine of them.
Thanks for the book idea. Will read tomorrow night, gotta love prime shipping
Respectfully, to those that have offered a multitude of opinions here, proton therapy as a salvage treatment has been done in a number of centers for a number of years. I had it done by doctor Rossi in 2017. He was doing it well prior to that time. As to the Bragg Peak being an unproved phenomenon , it is a matter of physics and is undeniable. Proton beam radiation will deposit less radiation on healthy tissues versus photon beam.
Whether or not it is your better choice I cannot answer, that would be the opinion of your treating doctors. The problem is they will never agree because those that don't do proton tend to disparage proton. The same here on this forum, you have a number of folks that are on both sides of this issue.
I can say from personal experience, having had salvage proton therapy as well as primary treatment with protons, that I had little to no short-term and zero long-term side effects from the treatment. And given the anatomy that had to be treated, it was not possible to use Photon radiation to do my Salvage treatment because of the collateral damage it would have caused. Proton was done successfully.
My opinion is, that if insurance covers proton you will have nothing to lose and possibly things to gain by choosing that treatment.
Unless you have had some good Imaging done like a p s m a, neither treatment may be successful if they don't have an accurate idea of where the recurrence is.
So you went to the same place I would go for your proton treatments.
Given both the proton and photon radiologist said they were comparable, it seems like it almost comes down to the doctor and how well they set up and conduct the treatment which really might boil down to the technicians.
It seems like the technicians are the ones who actually push the buttons and decide when my prostate bed is in 'close enough' alignment for the radiation to hit the bed and not the surrounding tissue. However, someone said previously it is very much computer algorithmic based so maybe once the treatment plan is completed it is all automatically done by the computer.
If I thought the photon radiation was more accurate at hitting the prostate bed I would go with that but I have no reason to believe that treatment will be done any more accurately than the treatment at the proton center. If anything the proton center is newer and I would think have the latest sophisticated machines which if everything else is equal would make the proton therapy as good or better at hitting the prostate bed. I guess I should know more about the types and models of the machines doing the radiation and all of the steps they take to make sure the prostate bed is hit to the best of the technologies capability.
As I said previously, I believe both use IMRT which I guess is the best around at hitting the prostate bed, other than MRI guided which I don't think they offer in this area. I think that I would have to go to UCLA for that, am calling them this morning.
You mentioned you had Dr. Rossi as your doctor. I have met with and talked to a different doctor at the proton center. I wonder how important which of the radiologist at the proton center you work with is? I was told they work as a team and present their plan of treatment to the entire group so it really is a team decision, but I have also heard Dr. Rossi is the best, that just does not happen to be who I saw when I went in for a consultation. Ugh, as I said, the technicians are probably more important and they are probably generic and run the machine for all of the doctor's patients. I doubt each doctor has their own machine and own set of technicians. I am way over thinking this.....
Thanks for your feedback on your experience with proton treatments.
Dr. Rossi is the most experienced proton radiation oncologist in the world. He has treated more men than any other, having formerly been the medical director at Loma Linda University's proton Center. He has my unreserved recommendation, he is a brilliant doctor that was able to do for me what other doctors including those at UCLA using Photon technology could not.
I do not have experience with others at California proton so I cannot comment on them. I would assume it is a team approach but I cannot verify.
The technicians have nothing to do with the accuracy of the delivery of each treatment. Their job is to place you in the gantry on the table in the correct position so that the computer verifies that your Anatomy matches that which they did during treatment planning. If the computer does not verify you're in the correct Place treatment will not begin.
Their technology is second to none. Their ability to place the beam exactly where the treatment planning indicated is just as good as any technology offered by any Center elsewhere, proton or photon included.
Each doctor does not have his own machine as you mentioned in your questions. Treatment is set up in advance using physicists, dossimity experts, the doctor, and each treatment is monitored by your doctor I am told.
There are many on this forum that are very knowledgeable , but most do not speak from experience. I speak from experience.
So now you have me wondering if I should try and 'switch' to Dr. Rossi instead of the doctor who initially saw me and who I have communicated with since my initial visit about three weeks ago.
Also, I am in contact with UCLA now to see about this MRgRT (MRI guided Radiation Treatment) but when the receptionist went to set me up with a doctor I realized I don't want to do what I did with the California Proton center and just take whoever the receptionist assigns me to. The lady at UCLA was very nice and told me to call back when I had a particular doctor in mind with who I wanted to do my initial video consultation with. So I am researching that now.
Maybe I will call back the Proton center and ask the receptionist if it is even possible to 'switch' doctors. I just feel weird about doing that, but I have so many questions now that I did not originally have and knowing about Dr. Rossi why would I not want to have him set up my plan of treatment.
Husband is same age as you and same pathology (3+4 with positive margins). He had treatment at MD Anderson as well as a consult with another RO at UCLA. PSA rose to .2 post RP.
Both RO's said he did NOT NEED ADT.
He had 35 sessions of VMAT radiation to his prostate bed only for a total of 70 gy. Each session is carefully planned, and bladder is measured prior to the session.
I didn't see you mention whether you will get bed radiation or full pelvic radiation. Something to ask.
I just spent the last couple of hours getting a video appointment with Dr. Kishan from UCLA who is involved in the MRI guided RT (MRgRT) stuff up there. Is RO Radiation Oncologist? When I called up there today to find out more about treatment options I started with the Prostate Cancer center but switched to Radiation Oncology. The doctor I will video conference with has published research on using MRgRT and I want to see about using it in my case.
Where is Dr. Anderson? Is he part of UCLA?
How long did it take for his PSA to rise to 02?
Yes both of my radiologists I saw (photon and proton) said they would not do ADT. It was my surgeon and urologists who said they thought I should do it.
MD Anderson Cancer Center is a cancer hospital in Texas that is very well known/respected. That's where my husband had his radiation treatment.
It took about a year for his PSA to rise to .2 (not .02)--
Yes, RO is short for radiation oncologist.
We also had a consult with Dr. Kishan @ UCLA and liked him a lot. I hope you do as well.
VMAT is a form of photon radiation, that is supposedly more precise and speedy than traditional IMRT. my.clevelandclinic.org/heal...
I think you're on to some things too as to the skill of techs or protocol of the hospital where the radiation is done. I am in another PC group and I can't tell you how many stories I read about bladder and rectum not being checked before each radiation session. If it's not checked and measured there are apt to be problems post treatment.
Why MD Anderson over UCLA? Where do you live? I am interested in UCLA because I live in San Diego so it is relatively close. Were you considering MRI-gRT?
I did some reading about VMAT. It sounds like it is a type of IMRT. I still don't quite understand all of the nuisances like the importance of a linear accelerator. It sounds like VMAT is only for photon radiation. I say that because proton radiation does not rotate around the patient. What I did not understand from the link you provided is why VMAT is more precise. They almost made it sound like the reason was because it rotates around the patient faster. It said, "Faster treatments improve the accuracy of radiation delivery ... Volumetric Modulated Arc Therapy (VMAT) uses photons (W-rays) generated by a medical linear accelerator. Very small beams with varying intensities are aimed at a tumor and then rotated 360 degrees around the patient." I don't understand how this explains why it is more precise than other treatments which of course is a goal for all of us.
What is the name of the other PC (I assume prostate cancer) group? I stumbled on this group and have learned an amazing amount. If there is a similar group I would learn even more.
Sorry if you already answered the following bio questions in all of your posts above but I didn't read them all, SO
Please tell us your bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!
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67, San Diego, DaVinci Robotic Radical Prostatectomy on June 3, 2019, UCSD, 3+4, no medications, Have not decided on which type of radiation I will do yet. Have conferred with a photon RO, proton RO and video conference coming up with UCLA RO. PSA 2014 in 5s, late 2018 got to 7, 8.2 May 25, 2019 right before RP. Since RP PSA 0.02 October 2019 to 0.05 in November 2020.
Before this forum I was only considering either photon or proton radiation. Now I am also considering other options that have more advanced IGRT like the MRgRT used at UCLA (thus the video conference next week).
I was originally mainly interested in getting feedback on ADT through this forum and I am currently leaning toward not doing ADT. Although I might try 1 month of ADT and see how I tolerate it. Based on some readings I decided to have my testosterone measured and just got that. I was sure my T was low based on my inability to gain muscle mass as the years have progressed, but it turns out my T was 851 which really surprised me. My ADT doctor said it did not really impact his recommendation to proceed with ADT and if anything made it a little stronger because with a higher T pre ADT it is more likely my T will come back after ADT treatment which is what I had read in the research.
Have really appreciated the forum's knowledge and support.
Thank you for your quick and detailed reply. You may want to copy it and add it to your home page for future reference.
As far as ADT for one month, I don't think that's enough time to get the "flavor" of any reaction to it.... Give it some thought as I can see you have regarding your Pca.... Keep up the good fight and kill those tiny MF bastards... Good source of info here....so keep posting....
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Continued fatigue and swollen extremities post-radiation and with ADT
Prostate Cancer PSA is detectible again
Low T after one year off ADT/ Radiation. Undescended testicles at birth. Psa undetectable 
Experiences with combination therapy? (ADT/Brachy/SBRT)
Start of 36 mo of ADT?
