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ProtonPals                                                    e-Newsletter January 2010
Dear ProtonPals:

 Welcome to the New Year and our first newsletter of 2010. What a month it's been and even though I'm going to stay away from commenting on religion, politics or the current administration,there are quite a few headlines left over and I think worth noting. The most moving being the human tragedy in Haiti as a result of the severe earthquake. The death and suffering were there for all to see in the 24-hour news cycle. Also on display was the the international generosity and heroism of individuals. In these headlines, brought to you by today's technology was the display of the human failings in the delivery of food, medical services or the treatment of the deceased. Here over the early evening hours came images that I never thought we'd see again. It's easy to sit on the side lines and play "what if" about these "human failings" in planning, construction techniques, materials and organization. But in the vein isn't it amazing what we can do with the advanced technology - the planes, hospital ships, the airlifts, the portable hospitals, the field MRIs and X-rays - that made it possible to save many lives. Let's not lose that perspective.

And along those lines come the news about human failings in areas that are much closer to home - automotive manufacturing (Toyota recall) and lapses in delivery of medical services. Calling our attention to radiation oncology errors was my least favorite "Gray Lady"(NY Times) who still needs to sell papers to stay alive. But it makes one ask why the article so mischaracterized radiation oncology in an article on Sunday January 24? The Radiation Boom .

I'd like to emphasize that the cases in the article were NOT treated with proton therapy and are NOT associated with the six proton therapy centers in operation. The cases I believe were all photon radiation cases.  While I'm taking a risk in writing about this, I believe we needed to highlight the response to the issues for you. You may have had a mixture of proton and photon treatment, you may have questions about the quality control at proton center, or you are newly diagnosed and considering photon (IMRT) radiation for your treatment.

Finally the topic of our support group meeting, "You've Lost That Lovin' Feeling" generated high interest along with the new way of mailing the notices. We had the largest turnout ever, of men and women, 42, with standing room only in the conference room at the Proton Center.

Remember the group meets every month and will meet again on February 25th to hear Dr. Lorenzo Cohen, Director of Integrative Medicine talk about Complementary and Alternative Medicine and new advances.

Your ProtonPals,
Joe Landry, Ban Capron and Peter Taaffe
ProtonPals
January 31, 2010


In This Issue
Concern About Radiation
M D Anderson Reponds
Reponse to NYTimes Article
RC Cancer's Response
Support Group Meeting Summary
Everything's Amazing
Help Wanted
"How To Do It"
New York Times Article on Radiation Over-Dosing 
Quality Methodologies(Six Sigma) - Toyota and Linear Accelerators.
What does Toyota automobile design/manufacturing and IMRT radiation have in common? Well plenty. They both depend on complex technologies, engineering design and the delivery of the product or services are controlled by a series of quality methods like Six Sigma.

If you've been treated at a Proton Therapy Center and have a bit of a background in process and quality improvements, you've probably counted the instances where quality checks are made; and if missed cause the treatment to go awry. All of these checks that were put in place have to be met otherwise the beam does not come on.

In the news, it was said today that Toyota grew too fast and that the cars are now so complex. But the defect it turns out is so small and not obvious. Only very long term testing in a specific humid environment would it show it up.  In spite of the fact that the car engine acceleration is controlled by the on board computer the "fix" will turn out to be mechanical either a shim or a reinforcement bar.

Those of us who chose proton radiation at M.D. Anderson are fortunate.  While the equipment and computer systems are extremely complex, much planning and testing has gone on at the Proton Center before the FDA approved and certified the individual bays and patients were treated. In addition Dr. Buchholz points out in his response, there's a whole team of highly specialized experts, including world renown radiation physicists who are at the center and work directly to support the patient care team in delivering a custom plan.

As an interested observer I watched as Gantry 3, the one with the scanning beam nozzle, remained idle for over a year and a half after the center opened in 2006 while development and clinical commissioning went on. After FDA approval in December 2007, the center took another 6 months before beginning patient treatment with that part of the system. That's how much time it takes to do it correctly. 


M.D. Anderson Responds
Understandably patients don't see the expert teams supporting the entire process
Dr. Thomas Buchholz professor and chair of radiation oncology at MD Anderson responds to the NY Times article and talks about how important the role radiation treatments have played since it's first clinical application 65 years ago. Using industry statistics he notes the harmful accidents occur very rarely, only 0.00001% of the time.
 
"Understandably, patients don't see the expert teams of highly specialized, Ph.D.-level medical physicists, certified dosimetrists and experienced computer specialists who work closely with the patient care teams making sure that equipment is properly commissioned and calibrated at every use, that radiation treatment plans are safe and properly directed,  and that therapists are proficient in the delivery of each patient's customized radiation plan. "  Read more and see the video 

Radiation Therapy is 99.9% Safe and Effective
The Article did not cite any errors in Proton Therapy

Dr. Tim Williams, the chairman of the American Society for Radiation Oncology the world's largest oncology society with 10,000 members wrote a letter to the New York Times putting some of the freely used statistics in context.

He pointed out how the numbers reported by the Times are exceptionally misleading since New Yorkers received 13.6 million daily radiation therapy treatments during the time period covered in the article and out of that number of treatments, radiation errors occurred 0.0046 per cent of the time. He goes on to say no medical error is acceptable and we all regret the suffering the patients and their families endured. The ASTRO organization works to strengthen the safety culture by providing tools, training and accreditation. From his Letter to New York Times about Radiation Therapy 

Even one error is too many and ASTRO continuously works to strengthen the radiation oncology safety culture. We are at the forefront by providing quality assurance tools, hands-on training for sophisticated treatments like IMRT, guidelines on treatment use, new technology assessments and accreditation. ASTRO leads an international coalition improving equipment interconnectivity to prevent errors.

RC Cancer Center's Response to the NY Times Article
"It would be a tragedy if this article negatively impacted the decision making process for cancer patients who need to pursue the life-saving treatments."

The RC Cancers with locations in Indiana, Kentucky and Georgia was one of the centers singled out in the January 24th NY Times article.  RC Cancer Center Responds

In their response they cite the quality control processes that are in place and how the Radiological Physics Center at the MD Anderson campus is credited as the standard bearer, which it has been since 1968. It was founded to provide quality auditing of radiation doses and is now led by Geoffrey Ibbott, Ph.D. 

Specifically, multi-leaf calibration testing is conducted twice a week and daily checks are conducted every morning on our linear accelerators to confirm beam energy, flatness and symmetry, as well as mechanical and optical calibrations. Monthly equipment calibration checks are conducted, peer reviewed and then approved. Board-certified medical physicists perform yearly linear accelerator calibration to ensure proper delivery doses of radiation. This calibration is then confirmed by the Radiological Physics Center based out of MD Anderson Cancer Center of Houston, Texas. In addition, the RC Cancer Centers' staffing model for radiation therapy includes having two registered radiation therapists working together to cross-verifying patient treatment set-up and parameters.
 

The Most Difficult Topic Covered at the Support Group Meeting
"You've Lost That Loving Feeling"
We had the largest turnout on Thursday, January 28th at the Proton Therapy Center for the prostate patient group meeting. The large conference room had standing room only as 42 persons attended to hear Mary Hughes, Clinical Nurse Specialist, M. D. Anderson Cancer Center who was the featured speaker.
 
There are vast resources in this area and if you need help in access this information you can get a referral to Mary by contacting Tai Ly or your nurse. Also MD Anderson has specialists and operates an erectile dysfunction clinic on the main campus where you can be referred to for an evaluation by your doctor.  Q&A: Sexual Relationships and Cancer

The slides from Mary's presentations are stored on the ProtonPals server and available for download.   Intimacy, Sexuality and Cancer  (PDF format)

I'll close with two sayings the first from Mary and the second from my archives -

  "In three words I can sum up everything I've learned about life: It Goes On"  Robert Frost.

Or in the 1964 movie Zorba the Greek, Anthon Quinn as Zorba, instructs his young pupil,Alan Bates -
             "Life is trouble, only death is not".  

Everything's Amazing and Nobody's Happy
How about a little levity after all that news.
Speaking about technology maybe this comedians' commentary on technology will bring a smile to your face. Try this short video for see if it lifts your spirits after reading about shortcomings in the today's technology.  You'll Love This 

Now Accepting Applications
Work at Home - See Your Name in Print 
No, this is not about money but it is about giving forward to the ProtonPals and helping the editor.
Classified AdLast year I received significant help in writing for the newsletter and I'm looking for more in 2010. We can use a few roving reporters who would take topics and articles which interest them and their ProtonPals. It's a win-win! You get to give forward and the ProtonPals would get to read for example: 
  • How you are doing in recovery
  • Whether you've developed a survivors Cure Plan.
  • What you think about advancements and treatments
  • Where you're reaching out to more men and telling them about excellence of proton therapy
  • Writing of a "My Journeys", articles that are so important for the newly diagnosed.
  • Let us know how the ProtonPals can use social networks like Facebook and Twitter
Please apply to Joe Landry, Ban Capron or Peter Taaffe.
A New Feature "How To" Articles
"Keeping Up to Date"

This is a first of a series of articles about keeping up to date with developments, say as part of your Cure Survivorship work. 

As part of my self assumed job of editor of this newsletter, I keep track of the newest developments going on in the field of urology and prostate cancer by signing up for alerts.  A site that I really like, that sends me a weekly email alert is UroToday.  For example in today's alert along with 10 other headlines is the topic Distress and emotional well-being in African-American Males with Prostate Cancer 

The articles are clinical publications and can be difficult for the non expert, but some are easy to glean some new key facts. If you cannot access a copy of the publication from your system, the two computers in Proton Center's Learning Center are "enabled" to access many medical articles not available on your home system unless you subscribe as a professional. You can also get a copy by calling or writing the MD Anderson's  The Learning Center on the main campus; or contact the Learning Center online.


About ProtonPals
Thank you for subscribing to the newsletter and using the ProtonPals web-site. You'll receive one or at most two mailings a month around mid month.  In addition to the newsletter we'll also send one or two additional emails of special events or news that are of interest to the group that month.
If you're a new subscriber you may not notice that we've contracted with the email service to archive our newsletters back to May 2009. 

ProtonPals is a group who chose proton beam therapy to cure their cancer and were treated at the University of Texas M.D. Anderson Cancer Center  Proton Therapy Center in Houston, Texas. The "Pals" formed a network of Pals in order to:
  • Stay up to date with treatment cure results
  • Provide support to others and Center activities
  • Be informed on any side- effects
  • Promote proton radiation since it's widely regarded to have a significant advantage over conventional x-rays.
  • Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend
Joe Landry, Ban Capron and Peter Taaffe
15806 Manor Square Drive

Houston, Texas 77062 - 4743
ProtonPals, Ltd.
 
Support ProtonPals by letting us know how you're doing.  As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're now tax deductible) at the address above.  Read more about about it on the website How to Help - Giving

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