Thought I would share this given to me by a wise friend who is in the fight.
Proton Therapy: Thought I would share... - Advanced Prostate...
Not a problem for a PC patient. Proton beam therapy treatment is much more expensive than traditional radiation therapy and there isn’t any evidence that protons are more effective than standard IMRT photon therapy.
I remember that in 2010 a top cancer center in USA was giving proton therapy indiscriminately to patients and billing medicare millions of dollars. A federal investigation occurred and that center of excellent was charged a hefty fine . Since then proton therapy use/misuse has been on the radar of federal agencies.
Medicare should follow suit to many private insurance companies who won't approve protons for prostate. It has so far has shown no advantage over the less expensive IMRT, or over the less expensive and shorter duration SBRT. When they complete comparative studies on protons for prostate, the decisions can be revisited. Medical costs in the US are already absurd without adding costlier therapies that have no advantage over existing ones.
In 2011, when I was diagnosed with prostate cancer I used to go to a cancer support group. There were two guys there who had proton therapy, who gave me the impression that proton therapy was much superior compared to other forms of radiation therapy. One of them gave me a book to read. Reading that book put me off proton therapy. The book written by a rich guy, who had proton therapy, was naked propaganda for proton therapy.
I went for brachytherapy. Unfortunately, my cancer took rather strange turns, not once but twice. I still believe that I would be in the same predicament had I chosen proton therapy. Anyway my insurance company was very likely to disapprove proton therapy. At that time, I was not on medicare.
When proton beam was still new and rare, I met a guy in another support group who mortgaged his house to get the $70,000 the clinic (Loma Linda) wanted at that time for proton therapy. He could have had IMRT paid for by his insurance company, but he was convinced that he needed protons to save his life and was furious that his insurance wouldn't pay for it.
The mixture of money and medicine is a complicated one.
While working as a "consumer reviewer" on a prostate cancer research panel I met two different medical school professors of radiation oncology. I asked each of them whether they thought that proton beam therapy was better than x-ray therapy. They each independently told me that there is no difference in the effectiveness of protons vs. x-rays. The effectiveness of the treatment depends solely on the dosage delivered to the tumors.
They thought that, in theory, proton beam could have fewer side effects because the energy of the protons is delivered in a smaller region with less energy delivered in front of and behind the target (lookup "Bragg peak" for an explanation). But in practice that region is often right at the boundary of the prostate and the surrounding tissue, so it's not possible to completely spare the surrounding tissue. Now, with SBRT (also called SABR), x-rays can be even more finely focused than with IMRT. So I have trouble believing that side effects are better controlled with protons than x-rays. I think proton beam therapy is a very, very expensive treatment that the proton beam centers now have to push hard in order to make the payments on the loans the took out to build the equipment.
Since Medicare is supported by public tax money, I agree with others here in thinking they probably did the right thing to stop paying for proton beam therapy.
Proton was sold to me as better for your body because it didn’t radiate everything on the other side of the area it was aimed at. Imrt goes all the way thru cooking everything. While there I saw many people getting brain , neck,throat and back tumors treated with proton therapy where burning up surrounding tissue would have not been preferred. Many were kids that had a lifetime to live with the problems added on by imrt. That was the pitch. If it is bull that’s too bad. If it’s true then men with prostate cancer should get the option to not be cooked through and through. Be nice to get the truth about any of this crap.
I don't know if proton beam therapy (PBT) for PCa produces fewer side effects than the best x-ray technologies. I've looked, but I haven't been able to find any prospective clinical trials that compare them (more on that below.) I understand the theory of the "Bragg peak" and how it reduces the delivery of energy to tissue in front of and especially behind the target area in PBT ( see en.wikipedia.org/wiki/Bragg... ), but there are very good ways to address the same problem in PCa treatment with x-rays - though not so with some other cancers. IMRT can be delivered to the prostate with most of the radiation going through relatively insensitive areas. SBRT (also called SABR) can do even better by finely dividing the beams and targeting from around a hundred different directions, so that tissue before and after the target gets only a small fraction of the exposure that the target gets. Perhaps simplest of all, brachytherapy can produce pretty close to zero exposure to areas more than a few of millimeters beyond the seed placements inside the prostate.
With tumors in the eye or brain we don't have these options and proton beam is definitely better. But with prostate cancer small amounts of x-rays won't do significant or permanent harm outside the target area when properly aimed. Interestingly, unless things have changed, the PBT centers use conventional x-rays in areas around the prostate in cases that require treatment beyond the capsule walls. That kind of treatment is very common for intermediate and high risk prostate cancers. I had it along with my HDR brachytherapy treatment.
Searching clinicaltrials.gov for trials involving PBT for PCa, I did find one that aims to directly compare PBT and IMRT Maybe we'll have more empirical data in a few years to resolve this issue.
I love your conclusion: "Be nice to get the truth about any of this crap." I agree 100%.
Alan, several bits of information regarding your post above to help clarify for those folks interested :
1. proton centers using scanning beam technology are able to treat an area close to 20×40 inches, and do not use photon beam radiation for large treatment fields. Things have indeed changed.
2. There is no safe dose of radiation for healthy tissue.
3. The physics of the proton, Bragg peak, etc which allow the proton particle to be stopped at the tumor volume result in a near zero exit dose and under 10% entrance dose. Protons deposit less radiation on healthy tissue. Hence it's use for ocular, brain, head, and neck cancers where photon radiation would cause substantial damage and morbidities.
4. Photon radiation deposits it's greatest dose where it enters the body and deposits radiation throughout the body until it exits. Even when hypofractionated and sent through the body at multiple angles healthy tissue receives radiation.
5. Small amounts of radiation deposited on healthy tissue can, and does lead to an increased chance of secondary radiation induced malignancies 15-20 years post treatment. That is an issue following radiation with pediatric patients and also men with 15 plus year life expectancy at time of treatment.
6. "Relatively insensitive" areas radiated by photons in order to reach the prostate include the bladder, small bowel, large intestine, rectum, and pelvic and hip bones. Those that have radiation related issues from photon beams passing through these organs and skeletal areas might argue they are not "insensitive".
7. There are currently two randomized trials comparing Photon and proton radiation with prostate cancer patients. The PARTIQoL trial led by Dr Nancy Mendenhall at the University of FL, and a 2nd trial at Mass Gen. Those interested can research both on line. Neither has published data yet.
8. Scanning beam proton technology allows the dose to be boosted within the treatment volume on identified lesions on MRI and other imaging. Photons cannot do this, without also boosting the dose deposited on healthy tissue.
I hope these facts help those interested to understand some differences regarding proton and photon radiation.
This my own experience, which frankly is what matters to me. My husband chose proton, had 44 treatments. Worked through the entire time other than the daily treatment time. His energy was great, slept well and the only side effect was he got up three times a night at the end and for a few weeks after instead of one or two. That’s it. His proton treatment ended the first of October of this year. One more Lupron shot to go and then they say he may be cured. I say we learn to sit in the watch and waiting place. At the end of October his PSA was .19. At diagnosis it was 79.
There is also an interesting wrinkle to the PBT versus SBRT comparison. There have been clinical trials of five-session PBT over the past two years. I have seen posts by two men on other forums who were very pleased with their "SBRT with protons" experience.
Logically, reduction of the number of treatments from 44 to 5 should make PBT more affordable.
I considered proton therapy 12 years ago and went to Loma linda to see about it. I was totally put off by what felt like a cult. They called themselves the “Brotherhood of the Balloons” after the balloon they stick up your keister during the procedure. My wife and I started calling them the “Brotherhood of the Buffoons” as we felt pressured. As I spent time looking into it it appeared clear to me there was no major advantage to Proton therapy. The interesting part is after speaking to a number of different doctors about the varied treatments, my wife asked the doctor at Loma Linda straight out what he’d do if it was him or a loved one. He didn’t hesitate. He said “I would do the seeds”. I asked why then were there so few doctors that did the seeds. He said it had the lowest reimbursement from the insurance companies so nobody want it to get into that field. Ouch
The 10,000 members of the Brotherhood of the Balloon are aware of this and have been contacting senators and congressmen to Lobby against this change.
I have been studying every Pca treatment out there after having been declined as a candidate for SBRT Cyberknife (because my tumorous prostate abuts my rectum). I have embraced Proton Beam Therapy as exactly how I want to fight my cancer. My company insurance Aetna declined coverage so I am signing up for Medicare today with an effective date of Dec 1. I'm counting on MD Anderson to get me approved before the Medicare Jan 1 rule change. Wish me luck.
Its interesting how proton treatment is always bashed by those that have been treated by other modalities, but the converse is not true. Nor is any other method of treatment bashed by members on this or other forums. When 10,000 men join an organization to promote a treatment that worked for them and are willing to speak to newly diagnosed men via phone or email because they will unequivocally state that their quality of life in 90% plus members cases is as good as pre treatment, speaks volumes.
Brotherhood of the Buffoons, that's a new one. Now, not only is the treatment being bashed, but also those donating countless hours to help other men. Sad.
I have wondered about this myself. With my PR background I often about how there is more driving the standard of care opinion? Who has the biggest PR budgets? PR is to manipulate opinions. There are many tools available now, including Facebook, various online news sites, and also sites such as this. Even search engines such as Google pick what you see first....
Indeed. There is a very good Bloomberg magazine article on how pharma's pr firms, and/or the pharma directly, will either create a "nonprofit" or subsidize a nonprofit to such a degree that a noble cause becomes a corporate subsidiary. Most of these fake nonprofits try to get people like me to sign on to letters of support for a piece of legislation or policy change. The worst case in our prostate cancer world is where the Zerocancer nonprofit received aprox $83million over a four year period from Janssen pharma. This was known in broad terms by most all of my counterparts, and me. Nothing we could have done beside talking amongst ourselves about this because there was nothing illegal for a reporter or District Attorney to jump on. Outsiders can see how they went from a $4 million a year nonprofit in (2011 or 2012) to a $47million in (2012 or 2013) and then received 16-20 million a year thereafter by looking at their 990's and comparing them to Janssens charitable giving reports. They've recently returned to their $4million level. The pharma's also offer money - in the guise of "advisory board" membership or "spokesperson" payments, to individual patients to pollute our conversations online or off as evangelists, usually for the fake or subsidized nonprofits or directly for the drug or treatment. They also badmouth whistleblowers. By the way, I'm NOT at all saying that you or the friend you referenced in your posting are one of these...not at all. But folks like that are out there, and the nonprofits and the individuals sound very credible and are hard to spot.
I have joined the Brotherhood of the Balloons website and am incredibly impressed with the stories and testimonials of men who have had Proton therapy. Story after story of men who have had no, or very little, side effects during and after treatment is compelling. I am going to discuss with MD Anderson whether they will hypofractionate my treatment if I can get Medicare approval.
There are numerous cases of other methods of treatment being bashed on this forum. Men who elect to take a different path, who pay attention to the dreadful study results for surgery and radiation, men who try diet, supplements, competitive medical treatments, all of them get a large dose of abuse when they dare to discuss those options here.
It has a marked effect, stifling discussion, driving people away. I agree that name calling of men who are trying to help others is sad, but it is far from the only example.
I've always found it strange that what is supposed to be a support groups treats fellow patients so dreadfully. I have some exposure to women in breast cancer support groups. The dynamic is completely reversed. The support is unconditional, and does not require that every woman follow "standard of care" treatments.
There are a lot of similarities between breast and prostate cancer. Both are cancers of exocrine organs, both are often but not always dependent on hormone levels, both use conventional treatments that are extremely ineffective. The success rate for chemotherapy in breast cancer is about 4% - almost exactly the odds that a man with localized prostate cancer will avoid distant metastases for 10 years if he elects radical prostatectomy.
It's too bad those similarities don't extend to support for fellow patients.
I'll wade into these controversial waters from the standpoint of my environmental radiochemistry background. Medicine isn't simply using naturally-occurring sources of radiation - we humans have gotten very clever in our ability to manipulate electromagnetic energy to the point we have created what can be seen as "boutique" radiation types to be used in therapies. In the end, as patients, it is relatively immaterial except how this energy is used in conjunction with specific delivery techniques (e.g., "cyberknife") to effectively disrupt the DNA of a tumor while leaving healthy tissues alone. Minimizing collateral damage is a big challenge and a huge point of upselling any type of radiation therapy regimen to a patient and their caregivers.
That's the end of my personal comment. For those interested, read on. I had this in a file I accessed on the Adenoid Cystic Carcinoma (ACC) Organization International (accoi.org) site. I think it does a great job of presenting radiation therapy types in an accessible manner (irrespective of cancer type):
Fundamental types of radiation particle beams
(Photon, Neutron, Proton, Electron, Gamma Ray, Carbon Ion):
This is the most common, widely used type of radiation, and is available at most
treatment centers and hospitals. This is widely used to treat most cancers
including known or suspect residual tumors which were not able to be removed with
surgery by itself. In simple terms, it is fundamentally a very high dose X-ray
beam. This is also the type of radiation beam utilized for most of the pinpoint
targeted types of radiation treatments, such as CyberKnife, TomoTherapy and
Novalis. Most hospitals have photon radiation available and the beam is
generated by a beam accelerator device that takes up the space of a typical
bedroom. Some of the newer manufacturers have developed a more compact
beam accelerator, such as the CyberKnife.
Neutron radiation therapy is a unique, high-LET radiation (the particles are
accelerated at a very fast rate) with very specific differences in how it affects
DNA in cancer cells when compared to standard Photon radiation. Neutrons
are produced from a large and expensive particle accelerator called a cyclotron.
This high-LET (high linear-energy-transfer) radiation is also referred to as “fast
neutron therapy”. Neutrons, pions and heavy ions (such as carbon, neon and
argon) deposit more energy along their path than x-rays or gamma rays, thus
causing more damage to the cells they hit. The cyclotron accelerator produces
protons and then a series of powerful magnets bend and aim the beam to strike a
beryllium target, where the interaction produces neutrons.
Since it is so unique it is available at just three locations in the US, with the
University of Washington Medical Center in Seattle being the primary site for
treating ACC. As reported in 2008 they see around 65 head and neck and
salivary gland cancer patients per year, and of those patients a substantial
number are of the ACC type. Neutron beam has shown itself to be highly
effective on ACC cells as compared to other types of cancer, and in some cases
has been the only viable choice for inoperable head and neck tumors.
A highly targeted type of radiation that "skips over" good tissue to deposit the
radiation in a more central spot where the tumor is located. A good image to use
to understand how it works is that of a shepherd’s staff. This is not as widely
available as the standard photon radiation and is used to treat a very specific
targeted area and not radiate any area around it. The equipment for generating
this type of radiation is very large and expensive, housed in a large three story
building structure and costing in excess of $100 million to build today. Since 2000
there have been more facilities built, and that trend continues to take place.
Used primarily as an add-on or in combination with other radiation treatments,
electron beam delivers its damage primarily on the outer surface, rather than
going deeper into the tissue. It is also used for interoperative procedures when
an area is radiated while exposed during a surgical procedure.
Gamma Ray (Gamma Knife)
Gamma rays are a form of photons produced from the decay of certain elements
or radioactive isotopes such as radium, uranium and cobalt 60, and uses cobalt
sourced gamma ray photons. This particular treatment is historically one of the
oldest radiation platforms. It was designed originally for only treating tumors in or
near the brain, which is still true today, but newer updates to the equipment are
being used for treating tumors in the spine area as well.
The gamma knife utilizes a technique called stereotactic radiosurgery, which
uses multiple beams of radiation converging in three dimensions to focus
precisely on a small volume, such as a tumor, permitting intense doses of
radiation to be delivered to that volume safely. Gamma knife treatments are
given in a single session. Under local anesthesia, a special rigid head frame
incorporating a three-dimensional coordinate system is attached to the patient's
skull with four screws. Imaging studies, such as magnetic resonance imaging
(MRI), computed tomography (CT), or angiography are then obtained and the
results are sent to the gamma knife's planning computer system.
There are only two centers in the world with this type of radiation, one being in
Japan and the most available center being in Heidelberg, Germany, which has
treated several ACC patients. Ion radiation does not use photons, but positively
charged ions, atomic nuclei which have lost their electrons from the atom shell.
The particles mainly used are Hydrogen atomic nuclei (protons) and Carbon
atomic nuclei, which are very heavy. This particular type of ions is therefore
called heavy ion. Atomic nuclei are accelerated in large devices to about three
quarters of the speed of light and shot into the tumor. The depth of penetration
can be enhanced by speeding up the ions.
Ion beams have always been interesting candidates for radiation therapy, since
they have special physical characteristics: When they hit the body they travel
very fast through the outer layers and lose hardly any energy before they
decelerate in the depth and eventually get stuck and transfer their entire
deleterious energy to the surrounding tissue. Therefore, ion beams are tailor
made for treating tumors located deeply inside the body
Pro-ton or Con-ton....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 12/06/2019 8:04 PM EST
Is there an update to the Medicare position on proton beam treatment? I can’t find good updated information.
Also, is proton beam treatment used for salvage/adjuvant treatment or only as primary treatment?
Any information is appreciated.
I don’t know about Medicare, we did private pay. Although we were in arbitration with our insurance for a long time. My husband did very very well with the treatment though, and this was the path he wanted to take bottom line.