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If you or a loved one is facing a cancer diagnosis, you need to know about proton therapy, a revolutionary treatment that gets remarkable results. Getting the straight story, however, isn’t always easy. In this post I counter some of the outrageous and unfounded criticism of proton therapy.

Typically, new technology must run a gauntlet of skepticism, resistance, opposition, criticism, and downright misinformation. This is a good thing. If it is worthwhile, it will survive everything that is thrown in its way. Proton therapy now finds itself in that position. There have been some bumps and lurches along the way, but proton therapy is emerging as the go to cancer treatment with a bright future.

When I was diagnosed with intermediate prostate cancer, my urologist recommended that I have both surgery and x-rays. Having done extensive research, I asked about proton therapy. “We don’t do that here” he exclaimed, and changed the subject. In five words he summarized the greatest barrier to proton therapy: Our doctors won’t recommend it. If they mention it at all, it is to criticize it, claiming it is new, untried, unproven, not medically necessary, too expensive, or not covered by insurance. To overcome this, you must take matters into your own hands even if your doctor does not support you.

After being treated with proton therapy in 2016, I was so impressed with both the positive experience and the amazing technology that I proceeded to write three books and found three websites on the subject. Recently, I have been dismayed by a spate of inaccurate articles casting aspersions on proton therapy. I don’t want to identify the negative articles, as it would only give them more (undeserved) traction. This posting responds to some of those critics.

Criticism: “. . . its beams stop at a tumor rather than passing through. But evidence is sparse that this matters.” Such a statement shows no understanding of proton therapy. This characteristic (stopping at the tumor) is the very essence of what makes protons so revolutionary and so superior to other types of treatment. This criticism is an egregious misstatement of the facts.

In 1946, brilliant physicist Robert Wilson, repentant after playing a major role in the Manhattan Project and the nuclear weapons that followed, published an article on the medical possibilities of fast protons. He saw a way to use sub-atomic particles not for destruction but to aid humanity. Decades of research and trials ultimately culminated in the first proton center being opened at Loma Linda University in California in 1990.

Here’s how protons work. Being particles in the nucleus of atoms, they have a positive charge which is balanced by the negative charge of the encircling electrons. The number of protons in an atom determine the atomic number, which in turn determines is place in the periodic table. Hydrogen, with one proton and one electron, is the most common substance in the universe. Proton therapy involves stripping the protons from hydrogen atoms, accelerating them to two-thirds the speed of light, directing them down a vacuum tube controlled by magnetic fields, and finally directing them to the target, namely, the cancerous tumor. Once they enter the body, the protons begin to pick up electrons from surrounding tissue so as to regain a stable balanced configuration. When this process reaches a certain critical stage, the protons suddenly claim their electrons in a great burst of energy and then stop dead. This burst takes place within the target and destabilizes the DNA of the cancer cells so that they cannot reproduce.

X-rays also disable the cancer cells, but they require more radiation and they deposit energy before and after hitting the target, thereby affecting healthy tissue all the way through the body. Far from being “sparse,” there has been seventy years of extraordinary development for proton therapy which became viable when imaging and computer software made it possible to identify and locate the target and specify the appropriate dose of proton radiation.

Criticism: “But its pinpoint precision has not been shown to be more effective against breast, prostate and other common cancers.” Thank you for conceding protons offer pinpoint precision. If you were receiving treatment, would you think accuracy is important? I certainly appreciated it when they treated not only my prostate but also the associated lymph nodes and seminal vesicles.

My beloved Ruth died in 2007 of breast cancer. I searched widely for treatments, which took us to Germany and into a wide range of integrative therapies. After six years, we lost the battle. Proton therapy existed then, but I never discovered it. Had I known, Ruth could be alive and well today.

When treating left-side breast cancer, x-rays damage the lungs and the heart, sometimes to a life-threatening degree, and other times subjecting the patient to a diminished lifestyle with lung and heart disease. Protons, on the other hand, stop at the tumor, and cause minimal damage to other sensitive organs. Here is a comparison from the website of the proton center in Prague. Photons are x-rays.

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Note that both x-rays and protons give a dose of 100% to the cancer. They both kill the cancer cells. For this reason, you will see many statements that say there is no difference is outcome. They both work. But of course, there is more involved that just killing the cancer. As a patient, I’m sure you would rather avoid the damage to nearby organs. There are illustrations similar to these for every type of cancer, showing how protons do a better job.

The proton center at Loma Linda University in California was the first to open, in 1990. Here is their statement about breast cancer.

Although proton radiation treatment is relatively new, clinical trials for breast cancer have already shown excellent signs of disease control and minimal side effects compared with traditional forms of treatment. Proton therapy also offers a number of other compelling benefits:
Treatment is noninvasive and painless
Proton therapy is effective for treating early stage breast cancer
Treatment offers quicker recovery times with minimal side effects
Causes less cosmetic damage compared with the burn marks caused by regular radiation
It is more accurate and precise than other kinds of radiation
Treatment is provided in an outpatient setting
Proton radiation has little to no impact on patient energy level

Not shown to be more effective? You decide. One would think that the stopping power of protons for treating breast cancer would be widely known. On the Susan G. Komen cancer treatment website they declare they are “fighting for the screening and treatment programs that save lives and the research that brings us closer to the cures.” Alas, my search for proton therapy on their website resulted in no hits. Nada. I find that shocking, but not surprising. Think of all the women who go there for advice and never learn about protons. This lack of visibility is a serious problem facing protons therapy and a major tool of its critics who with to keep it a secret.

How do we explain the omission? Does the Susan G. Komen foundation really know nothing about one of the best treatments for breast cancer? Why wouldn’t they be widely promoting it? Even if they think it is still unproven, why wouldn’t they encourage more research? Are they only seeking a pharmaceutical solution to cancer? Other major sources of information on breast cancer treatment are similarly silent about protons.

Critics sometimes use the term “medical arms race” for the spread of proton therapy. However, an arms race, while seeking leading edge technology, has as its purpose death and destruction. Robert Wilson knew that very well. He repurposed protons for an entirely different mission, one of healing. The analogy is completely inappropriate.

Critics seize upon the cost and complexity of protons. They claim investors are charging ahead without sufficient scientific basis. These are just distractions and smoke screens. No one charges blindly into an expenditure of the size required for proton therapy. In the end, it boils down to insurance companies not wanting to pick up the tab, traditionalists fighting change, and a vast x-ray industry that is defensively circling the wagons.

When it comes to prostate cancer, especially early and intermediate stages, survival rates are high for all treatments. They have the same outcome. That’s why some people say there is no advantage in paying a premium for protons. Consider the study of 1,327 men at the University of Florida Health Proton Therapy Institute between 2006 and 2010 with median follow-up of five-and-a-half years. Less than one percent in the cohort experienced serious gastrointestinal side effects and only three percent experienced serious urologic side effects. These are far fewer side effects than for other modalities. I think such results should be considered as part of the outcome, in which case, they are not equivalent.

And then there is the matter of recurrence. The proton therapy center in Prague has a specific protocol to treat patients whose prostatectomy (surgery) failed and the cancer returned. A study sponsored by the prestigious National Cancer Institute found “a significantly reduced risk” of radiation-induced secondary malignancy with proton therapy. Another study in the United Kingdom reported the following: “Radiation therapy takes up a major part of investments to fight cancer since 523 (52%) out of every 1,000 new cancer patients will need radiation therapy as part of their treatment. Out of these, 120 patients (23%) will require re-treatment.” A 23% failure rate for x-rays. No wonder they are trying to fend off proton therapy.

Similarly, Nancy P. Mendenhall, a leading proton researcher, reported that intensity modulated radiation therapy (IMRT, which is x-rays) increases the risk of potential recurrence for prostate cancer by fifteen times! Further, M. D. Anderson Clinic in Houston calculated for esophageal cancer, X-rays have a whopping 96% additional cancer risk, caused by affecting surrounding tissue, which protons avoid. Why aren’t the critics mentioning these statistics?

A study in Sweden found if you add up the subsequent costs of side effects, recurrence, medical supplies and other expenses, in the long run protons are no more expensive that other modalities. Actually, the Mayo Clinics and the universities of Pennsylvania and Maryland charge the same for protons as for x-rays. In such instances, proton therapy is not more expensive. Yet even when cost isn’t an issue, insurance companies still resist, fearing that to admit the efficacy of protons would open the floodgates for additional coverage.

When surveys are taken asking whether men would recommend the treatment they received, the numbers speak for themselves. Surgery has the lowest rating, x-rays are in the middle, and protons have soaring reviews. Frequently after I have given a talk about proton therapy, men come up to me and say, “Sheesh, I had surgery (or x-rays). I wish I had known about protons.” Maybe side effects and lifestyle are unimportant to insurance companies, but they sure make a difference to us patients.

When protons were first introduced, the question was whether they would perform as well as x-rays. Now the tables are turned, and x-ray practitioners are scrambling to try to prove that they can achieve the same results as proton therapy. A good example is the position taken by ASTRO, which has 10,000 members who practice x-rays.

A study in 2009 by the American Society for Radiation Oncology (ASTRO) concluded proton therapy isn’t any better than less expensive alternatives. As a result, Aetna, United Healthcare, and Cigna stopped covering proton therapy for prostate cancer. Cigna announced proton therapy was not considered “medically necessary.” The study stated that the benefits of proton therapy when compared to other options is unclear and should not be used routinely on patients. This remains an oft-repeated claim today.

In May, 2016, a whole edition of the Red Journal, a publication of ASTRO, was dedicated to proton therapy (more than five hundred pages). I remember one article still claimed equality for x-rays, but the rest of the journal clarified the excellent results of proton therapy. Those scholarly articles convincingly reverse the conclusions of the earlier study. Yet, despite this new evidence, insurance companies cling to their policy of non-coverage and critics keep quoting the original study.

Critical articles often date as far back as fifteen years ago. They don’t take into account recent data or new developments in the last five or six years. The original technology for proton therapy is called double scattering. It spreads out the proton beam into a plane, which is regulated and shaped in a number of ways to conform to the shape of the tumor. Now, the excellent results achieved by proton therapy to date should improve even more. The upgrade is called pencil beam scanning, which projects a series of dots that are laid down in a series rows and layers. Picture a jar with a mixture of red and white marbles. Pencil beam scanning could treat just the red ones with minimum effect on the white ones. Neither x-rays nor double scattering can do that.

So enormous is the advantage of pencil beam scanning that the University of Florida and several other proton centers are expanding to include this type of equipment. With pencil beam scanning, proton therapy is now suitable for 80% of all cancers, where previously it was 20%. This is the basis for my ebook, Introduction to Proton Therapy: Revolutionary Treatment for 80% of All Cancers. So when the critics say proton therapy is only appropriate for a small number of applications, they are far off base.

A recent article referenced a study by Duke University in 2013 that concluded protons were no better than other modalities. Yet, last year (2017), Duke University applied for a permit to build an $88 million proton therapy center. Hm-m-m-m-m. They already have x-rays. If protons are no better, why would they invest $88 million? Yet recent critical articles still quote their old study.

Critic: “The problem is that the rollicking business of new medical machines often ignored or outpaced the science: Little research has shown that proton beam therapy reduces side effects or improves survival for common cancers compared with much cheaper, traditional treatment.” This statement bis total nonsense. There are hundreds of studies that show proton therapy as having fewer side effects. That is one of its major descriptions in medical textbooks. Does a total of twenty-eight proton centers comprise some kind of untoward rollicking? The fact is, the investment of vast sums represents a strong vote for proton therapy. These institutions don’t make such investments lightly. They certainly aren’t rollicking or ignoring science. The use of such language intentionally casts aspersions on proton therapy, distorting and ignoring the facts.

Critic: “One recent study of lung-cancer patients found no significant difference in outcomes between people receiving proton therapy and those getting a focused kind of traditional radiation, which is much less expensive.” How recent? What study? The International Journal of Radiation Oncology published a study of the National Cancer Database comparing x-rays and protons for Non-Small Cell Lung Cancer (NSCLC) in which proton therapy had higher survival rates. I think that’s a rather significant difference to the survivor. The proton center at Loma Linda University found excellent results for protons in a 12-year study. (See https://www.ncbi.nlm.nih.gov/pubmed/23845845).

IBA, a proton therapy equipment manufacturer, summarizes relevant studies: “A comparison study on estimated risks of cardiovascular disease and secondary lung and breast cancers attributable to 3DCRT (x-rays), volumetric modulated arc therapy (VMAT, x-rays) and proton therapy shows proton therapy as the superior modality that results in the least life years lost.” Least years lost means most years lived. Maybe the critics don’t care about such statistics, but living longer is certainly relevant to cancer patients.

Much criticism has been directed toward the four proton centers developed by Advanced Particle Therapy (APT, now defunct) at outrageously high costs (well over $200 million). The center in Dallas went bankrupt before construction was completed when a major investor claimed $20 million had been diverted for management fees and other projects. The center in Atlanta, Georgia, has now been taken over by another developer at what seems like an insurmountable debt ($350 million). The center in San Diego went bankrupt last year and is now operating under new more secure financing and administration. The fourth center, at the University of Maryland in Baltimore, is involved in a financial restructuring. These incidents were used to claim that the proton therapy field is “littered” with failure. It’s true some centers still operate at a loss, but many new businesses take a while to reach profitability. That doesn’t imply failure. Ever heard of Amazon? The center where I was treated lost money last year. That had no effect on my treatment or the excellence of proton therapy.

The bankruptcy of the San Diego center may imply financial difficulties, but its performance in the area of proton therapy is stellar. They have pencil beam scanning in all five treatment rooms. Here, from their website (www.californiaprotons.com) are the seven advantages of proton treatment:
1. Laser-like precision: Protons can be manipulated to stop and deliver radiation directly at a tumor and no further.
2. Radiation dose variation: Proton therapy allows physicians to vary the intensity of the radiation dose at any point within the tumor, which was not possible with other technologies.
3. Treatment for many tumor types: Our technology expands the treatment options to treat larger and more irregularly shaped tumors. It also allows more types of tumors to be treated compared to what was possible with passively scattered protons.
4. Lower incidence of secondary tumors: Reduced radiation toxicity results in a lower incidence of secondary tumors compared to standard X-ray radiation.
5. Minimal side effects: Because proton therapy spares healthy tissue surrounding a tumor, side effects such as diarrhea, nausea, headache and loss of appetite are less likely. After treatment, most patients resume their daily routines.
6. Fast treatment time: We replaced the heavy, cumbersome devices of older passive-scattering proton technology with pencil beam scanning. Unlike the older technology, our treatment plan can be loaded into the computer and completed within a matter of minutes so that patients can get back to their lives quicker.
7. Personalized care: Our world-renowned medical team is committed to providing the most personalized, comprehensive cancer care for our patients, and offers the latest in medical advancements and technology.

The fact is, some of the most reputable cancer centers in the United States (and around the world) have included proton therapy in their array of treatments because they realize it is the treatment of the future. The center planned for Salt Lake City is a good example.
“Bringing proton therapy to Utah is completely in keeping with the vision we had when we founded HCI over two decades ago” institute founder Jon M. Huntsman Sr. said in a written statement. “I remain absolutely committed to ensure that our patients have access to the very best equipment and expertise to fight their cancer. Proton therapy is yet another tool we will bring to our patients to give them the best possible outcomes against this dreadful disease.”

I would like to suggest that Dr. Huntsman is not in an arms race, he is not duping rollicking investors, he is not victim of a price bubble, he is not proceeding without proper scientific evidence, he does not believe proton therapy is no better than the alternatives. He recognizes the potential of proton therapy in the treatment of cancer and he wants to have that capacity at his clinic. This is the reason proton therapy will prevail.

What will be the demand for proton therapy? I saw one statistic that said 137,000 patients in the United States would benefit from proton therapy every year, but the current capacity then stood at 14,000. Another prediction, by MEDRays Intell Proton Therapy World Report 2015, called for an increase from the 16,200 patients treated in 2015 to 300,000 in 2030, only twelve years from now. That prediction would suggest the need for 250 proton therapy centers, almost ten times the current number.

The University of Pennsylvania has been a leading force in the progress of proton therapy. Since the Roberts Proton Therapy Center opened in 2010, at a cost of  $144 million, Penn oncologists have treated almost 4,500 patients there. “It’s very full, and it keeps growing,” said Ralph Muller, chief executive of the University of Pennsylvania Health System. “Essentially, we’re running it from 7 in the morning until 10 at night, and running it on Saturdays.” Now they are expending to build a proton center in New Jersey.

Some proton centers are thriving. Others are not operating at full capacity. Recently, MedRays reduced their predicted growth for proton therapy by 20%. If the treatment is so excellent, and the number of possible patients so numerous, why this disappointing response? Here are three reasons.

First, lack of insurance coverage. This is discussed in other posts. I personally met a man who had fought Cigna for five months before gaining coverage for protons. Alas, by then the cancer had spread and he died three months later. I consider him a heroic martyr for the cause of protons.

The second reason is that competing modalities will not refer people for proton therapy. Where I was treated, 85% of the patients were self-referred. That means they had to find out about proton therapy for themselves, often over the objections of their doctors. I was one of them. I believe proton therapy needs a direct appeal to the public, much as the pharmaceutical industry does with its ads on television. Apparently it works, encouraging people to ask their doctors for their drug, despite the fearful list of possible side effects. The Texas Proton Therapy Center in Irving (near Dallas) seems exemplary in this regard. I have seen their ads in airline magazines, on electronic billboards at Love Field, and as paid links on the internet. You must find out about proton therapy for yourself.

The third reason protons have under performed is that the public either doesn’t know about them, or are confused by conflicting information, critical articles, and fake news. Here is a quotation from the website of the American Cancer Society (ACS):

Although in theory proton beam therapy might be more effective than using x-rays, so far studies have not shown if this is true. Right now, proton beam therapy is not widely available. The machines needed to make protons are very expensive, and they aren’t available in many centers in the United States. Proton beam radiation might not be covered by all insurance companies at this time.

That’s hardly a ringing endorsement. The generalization “studies have not shown” is so broad it implies that there have been no studies in favor of protons. That’s crazy. There have been hundreds of them, worldwide. Elsewhere the ACS says the following: “Early results with proton beam therapy are promising, but it’s still fairly new, and there is very little long-term data. . . . There are only about 15 centers that do proton beam therapy in the United States at this time.” In another place they say there are “a handful of centers.” Actually, there are 28 centers at this time and more planned or under construction. This information, too, is out of date.

How long will it take before mainstream traditional medical organizations admit the excellence of protons? Some sources say it takes 30 to 50 years for treatments to go mainstream. Here is one more quotation from the ACS website on the general topic of external radiation.

Proton beam radiation therapy uses proton beams instead of photons or electrons. Protons are parts of atoms that cause little damage to tissues they pass through but are very good at killing cells at the end of their path. This means that proton beam radiation may be able to deliver more radiation to the tumor while reducing side effects on normal tissues. Protons can only be put out by a special machine called a cyclotron or synchrotron.

I am enthusiatic, so I don’t qualify my statements about proton therapy. But most places will use the word “may” when describing the results, as the ACS did in this quotation. Meanwhile, you don’t need to wait. Go to any of the resources listed here and learn more about proton therapy.

If the situation is complicated for the patient, the same is true for the medical community. I recently read about a medical group pulling out of a consortium formed to get proton therapy in their community after their oncologists questioned its efficacy. It’s true that the technology is very demanding, both financially and technologically. Perhaps they were rightfully not up to the task. The developer, however, took exception to their reasons, as they included some of the same old misguided arguments.

By attempting to discourage people from considering proton therapy, the critics are literally playing with people’s lives. They are attempting to keep them from the very treatment that will get them the best result. Don’t let that happen to you. Don’t disregard proton therapy based on something negative that you have read. Be proactive. Do your own research. Every proton center and several organizations provide a plethora of information. Virtually all proton centers have ambassadors, which are men and women who have received proton therapy. They are available to answer questions. Find an ambassador who had your kind of cancer and ask about his or her experience. Get a second or third opinion. Be informed. Then make up your own mind.


FOR MORE INFORMATION SEE:
www.protontherapybook.com
About my proton therapy books

www.proton-therapy-centers.com
A list of current proton therapy centers in the United States

www.proton-therapy.org
The National Association for Proton Therapy

www.protonbob.org
Brothers of the Balloon website (prostate cancer)

www.provisionproton.com/proton-ambassadors
Proton ambassadors

www.ptcog.ch
The international Proton Therapy Cooperative Group (Switzerland)

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