I'm Back
Can it really be two years since my treatment for prostate cancer with proton therapy? My last fraction was on November 1, 2016. I am on a national registry that will track me for the rest of my life, which requires a check-up every six months. I have had four so far, with the last one showing a PSA of 0.50 (16.0 before treatment). I am so gung ho on proton therapy that I spent much of 2017 writing books and starting websites in order to get out the word. And then life happened. Linda and I moved to Blue Skies of Texas, a great retirement community in San Antonio with all levels of care available when needed. Downsizing, selling our home, getting established, took up our time, along with our usual traveling. I did manage to get out the new editions of my books. Now, as life gets back to normal, I hope to do more with the blog and newsletter. Besides updating my websites, I also have been responding to inquiries by email about my experience and knowledge of proton therapy. Of course I continue to have many irons in the fire, books to write, marketing to do, billiards tournements to play, labyrinths to install, presentations and workshops to give. "What will I do when I retire?" people ask themselves. The answer is, lots of things, of which I am a prime example.
New Editions Available, Old Ones Discontinued
My first book, in full color, cost $29.95 because of international distributions, availability to bookstores and libraries, etc.. Feeling that was expensive, I wrote an abridged version in black and white, with a kindle edition. When it was time to write my second book, it went through several versions until finally, this past summer, I reorganized everything into two books. Now, because they are avaulable only on Amazon, the cost is $19.95 ($9.95 in electronic format). Both are in full color, with both print and electronic versions. All previous versions and editions have been taken off the market (exept some used books that show up, being sold by third parties). So here is the scoop.
This was my first book. It has been completely redone, with mostly new illustrations, many of which were provided by the proton therapy center in Prague, the Czech Republic. It is in full color, of course. Because many kindles are in black and white, and because a previous print version was black and white, I have a website on which people can see the full color versions of all of the illustrations, along with captions and explanation. In fact, even without the book, the website is very informative. It is www.ProtonTherapyBook.com. Recently, I realized there is another option. You can get a free kindle reader app for your computer and open the book there, in which you will have the illustrations in full color, and much larger than the kindle.
I didn't want to promote proton therapy only for prostate cancer. With the development of pencil beam scanning, intensity modulated proton therapy (IMPT), and new technologies such as Spot Scanning Proton Arc (SPArc) and other developments, proton therapy can be used to treat 80% of all cancers. Hence, this book, which is also full color. Since reviews are the lifeblood of all authors, please help me out if you read my book(s) and write a favorable review on Amazon, Goodreads, or social media. Here are the links for both the books and Amazon's review pages:
Best Prostate Cancer Treatment: Proton Beam Therapy
Ebook edition
Review link
Print edition
Review link
Proton Therapy: Revolutionary Treatment for 80% of ALL Cancers
Ebook edition
Review link
Print edition
Review link
ASTRO 2018
The American Society for Radiation Oncology (ASTRO) held is annual convention in San Antonio in October. I couldn't afford to register for the lectures, most of which were not of interest to me anyway, but I did get a chance to visit the vendor area and to look through the program and poster presentations (thanks to a guest pass by the makers of SpaceOAR, a hydrogel that was used in my prostate cancer treatment to avoid damaging organs at risk). It was quite enlightening.
My name tag had a bar across the bottoms that said Vendor Area Only. I covered it up, subsequent to this photo, with a proclamation that said "Proton Therapy Advocate." When you enter a booth, everyone looks at your name tag, so it was a good conversation starter.I pointed out that I was an advocate from the point of view of the patient, not the medical aspects. I make it clear on my websites that I don't give medical advice.
I wanted to see how much exposure was given to proton therapy. The answer is, very little. Some of the big vendors, such as Varian and IBA, had proton therapy displays. And there were a handful of presentations, but they were dwarfed by the attention given to x-rays. I tried unsuccessfully to get a press pass, which was turned down. ("Anyone can write a book or have a website.") You must be a part of mainstream media. The press person told me after getting some attention in the past, proton therapy is now experiencing a backlash as all of the attention is going to a new technology called Stereotactic radiotherapy. Here is an example:
In the above case, they are emphasizing the treatment of breast cancer. This is big money expressing itself. Breast cancer is very prevelent, and this vendor spent hundreds of thousands of dollars to push their technology. So did a major pharmaceutical company. I looked up stereotactic radiotherapy on the internet and learned that the purpose is to treat the cancer in one or just a few sessions, reducing the risk to healthy tissues. The website, www.radiologyinfo.org, did mention proton therapy:
- Proton beam or heavy-charged-particle radiosurgery is in limited use in North America, though the number of centers offering proton therapy has increased dramatically in the last several years. See the Proton Therapy page for more information.
The information about proton therapy is quite fair and positive. At the end they have a paragraph about side effects that I think is taken from x-rays.
Proton therapy is especially appropriate for breast cancer, as it doesn't damage the heart or lungs as x-rays can. While ASTRO says quite a bit about dealing with side effects, it fails to give credit to proton therapy, which avoids many of them. Even their literature barely gives a nod to protons, and in one major booklet, doesn't even mention it. If you ask them, they will say that they are waiting for more double blind random trials comparing protons and photons (x-rays). But here's the kicker. Show me the double blind studies for stereotactic radiotherapy. They have embraced that technology wholeheartedly. Where is the proof for it? Clearly a double standard.
For me this is a big deal. I found the following paragraph on the website of the Seattle Cancer Care Alliance, which has a proton therapy center:
A landmark study, entitled Risk of Ischemic Heart Disease in Women after Radiotherapy, (Darby, et. al., published in the New England Journal of Medicine, 2013), has identified a troubling side effect of large radiation doses near the heart. The research findings identify that for every Gray (a unit of radiation dose measurement), a woman’s chance of a major coronary event goes up by 7.4 percent. As the report cited, “Randomized trials have shown that radiotherapy for early-stage breast cancer can reduce the rates of recurrence and of death from breast cancer. However, long-term follow-up in some trials has shown that radiotherapy can also increase the risk of heart disease, presumably through incidental irradiation of the heart.” These results were reproduced and confirmed by another key study published in 2017 (van den Bogaard et al.) in the Journal of Clinical Oncology in which patients were treated with modern radiation techniques and thus applicable to the patients of today.
In the light of the demand for studies about proton therapy, it is suspicious the extent to which ASTRO underplays quality studies that are critical of x-rays.
I discovered some other players in the proton world which I had not previously known about. They are still on the fringes, or, since that is where ASTRO is trying to keep proton therapy in general, you might say on the fringes of the fringes. Considering that proton therapy has an uphill climb before it is considered mainstream, these vendors have a mountain to overcome. I have a much longer account of my visit to ASTRO in my blog: Drop in the Bucket: Proton Therapy at ASTRO.
Aetna assessed $25 million judgement for declining proton therapy
The jury was unified in their opinion that Aetna did not properly consider a claim for proton therapy. The insurance company was haughty and essentially admitted that they spent more time and effort on their court defense than on the claim. The patient eventually began treatment with proton therapy but it was too late, and she died. In awarding such a high figure the jurors were urging Aetna to reconsider how it treats requests for proton therapy. However, after losing the case, the attorney for Aetna sneered that they would be successful on the appeal. This could drag out for years,
In reading the above case, I found another situation in California in which a doctor who made recommendations for acceptance or rejection of claims admitted that he worked from home and never actually looked at the claims. He had a nurse read them and make a recommendation, which he followed. The fact is, insurance companies don't care if the patient dies, they are looking at their bottom line. They have company policies that dictate rejection for most proton claims.
Soon after this huge judgement, I received an email from an attorney looking into similar suits. Follow the money, I would say. After providing a number of resources, it occurred to me that others may also be interested in that material. So I posted a blog entry with legal resources. Perhaps a threat to take the insurance company to court may result in a reconsideration of its rejection. See: Legal Resources.
Research: Countering misinformation about proton therapy
A number of essays that I have read recently claim that we now live in a post-truth world.I don't mean just turning one's back on the truth, such as global warming. I mean deliberately making false claims and dismissing facts as if they were just opinions. Such has been the case with proton therapy. I have seen some really astounding misinformation. Just recenly I found a website for x-rays that said their accuracy comes within a margin that is less than one millimeter, whereas proton therapy can be off by 20 millieters. That is more than three-fourths of an inch. That is absolutely ridiculous. By its very nature charged particles like protons are more steady and accurate the x-rays, which can wander.
When you search on the internet you often get hits that have little drop-down menus that ask a question. When you click on it, it opens up with an answer. These are not taken from any verifiable source, they are taken from specific websites. I have seen answers that say by far the best treatment for pediatric brain tumors is x-rays. If there is one fact on whih almost everyone agrees, it is the superiority of proton therapy for children with brain tumors. Yet here is someone saying just the opposite. How is anyone unfamiliar with proton therapy supposed to evaluate such a claim? So, I am researching extreme examples of misrepresentation to feature in a future blog article. If you have been influenced by a negative portrayal of proton therapy, please send me a link.
National Association for Proton Therapy annual conference
On March 24-27, 2019, the annual conference for NAPT will be held in Miami, Florida. How exactly will I fit in? That's not clear. I don't qualify to be a member, not being an active part of the industry. Fortunately the registration fee for current or past patients of proton therapy is only $100. Otherwise, they really gouge nonmembers. Full price member rate is $799, whereas nonmembers pay $1,450. Are they trying to discourage nonmembers or just wanting to make them a profit center? Of course I still have to travel to Florida, stay at hotels, etc. but I plan to attend. Wouldn't it be nice to have a little booth or table to display my books, talk about my websites, or give a talk about being a proton therapy adviocate? Not going to happen. Frankly, they don't really care. They have other things on their minds, like getting the technology right and trying to make a profit. This is all a labor of love for me. There is no budget for that sort of thing. If you are interested in attending, here's a link: NAPT Conference.
A Different Beam Newsletter
I subscribe to newsletters from a number of the proton therapy centers. Lo and behold, the folks at the proton therapy center in Seattle also call their newsletter The Beam. Sheesh. I thought I was so clever. Was I first? Who knows. Am I going to change the name? Probably not.Click here to see their newsletter. My previous newsletters have been pdf documents. However, I thought it would be easier to read them in full scale, so I have changed the format, as I will do for future issues.
What you can do to promote proton therapy
Share your experience
If you have benefited from or are familiar with proton therapy, share your experience and knowledge with others. I went so far as to write books and found websites. That may be more than you want to do. Nevertheless, in your conversations with others, when you hear about someone receiving a cancer diagnosis, tell them the importance of being aware of proton therapy as one option for them to consider.
Talk to your health providers
If you do not live near a proton therapy center, it is likley that most health providers in your area are unfamiliar with the technology. When you interact with them, suggest that they become conversant about the potential of proton therapy.
Lobby your insurance company
One of the greatest hurdles for proton therapy is overcoming the unwillingness of insurance companies to cover it as a treatment. They are likely to still claim it is unproven, or not medically necessary. There are good answers to overcome such policies. Become familiar with them. (The recent $25.5 million judgement against Aetna for refusing coverage may be a good starting point for your conversation. See blog.LegalResources.html)
Counter unfounded criticism
I constantly search the internet to see what people are saying about proton therapy. I have directed some of my blogs against the inaccuracies. If you hear people parroting undeserved criticism, speak up.
Don't fall for the myths
One meaning for the word myth is a statement that is commonly held but is factually untrue. One way people attack proton therapy is to continue to promulgate such misrepresentations. Here is a refutation on the protonBOB site to the ten most common myths about proton therapy: https://protonbob.com/about-proton-therapy/proton-therapy-myths. When you hear these myths being repeated, stand up for proton therapy and tell the truth.
Buy and distribute my books
Let's face it, books about proton therapy are never going to make the best seller lists. It sounds self-serving to suggest you buy my books, but I assure you that the modest income they provide does not cover the cost of these websites. I believe they provide the best picture of proton therapy, either specifically for prostate cancer, or for all cancers. Give them to your friends, put them in your doctors' offices, give one to your public library. Give them to cancer support groups.
Write reviews of my books
If you have read my book(s), please leave a review on Amazon so others may know what you think about it. There are links to the review page in the article above about my books.
Include my links on your social media
Despite my intent to create a presence on social media, I have not been able to do that. I guess I'm too old of a dog to learn new tricks. But you can. In whatever ways possible, share this information, the books, the websites, in your social media accounts.
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That's it for this newsletter. I'll try not to wait a whole year for the next one.