ProtonPals

In gratitude to all who’ve come forward to give support and information to each other in the many daily unrecognized “help” in our little den in the Proton Center and for the help you’ve given us in making this newsletter and web-site possible.

From Your Texas ProtonPals.

Ban Capron, Peter Taaffe, and Joe Landry

This was painted in 1943 by Norman Rockwell and is in the Norman Rockwell Museum in Stockbridge, MA. It’s an oil painting on canvass and is 45 inches by 35 inches. Artchive Source.  It is one of the four paintings, named the Four Essential Human Freedoms commissioned during World War II. The others are Freedom of Worship, Freedom of Speech, Freedom from Fear.   Background

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Note: Full credit is given to the N.Y. Times where this article was published on October 22, 2009 by Aliyah Baruchin.  Since current articles are not archived on their site for an extensive time period, we’re providing a PDF copy for our membership instead of directing you to the site.

In an article by Terry Mason a urologist and a leading advocate for African- American men with prostate cancer points out that the statistics on prostate cancer are horrendous - AA’s have a 60 percent higher risk and twice as like to die of it.  I became aware of this when one of our Pals presented his “My Journey” to the support group at University of Texas M.D. Anderson Cancer Center.  Dr. Mason puts it in context for us Notes from the Center of an Epidemic

One of the ProtonPals members reviews the article and reflects on the data and his treatment at the M.D. Anderson Proton Therapy Center.  

jelandry

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It’s Sunday and a beautiful day outside and I don’t want to be writing about cancer just now. I’d rather be on the beach in Galveston, but now that I’ve taken to packing parachutes for men who may come along and read our newsletters and our web site, I feel I must share a very moving article with you that I just read about M.D. Anderson. It speaks volumes of what one goes through with have cancer.If you’re a patient you have first hand experience with cancer, but as prostate cancer patients you are relatively isolated and in a great environment. Unscathed by evidence of the surgeries and the type of treatment that has to go on at the main center with as the author describes with it’s own sights and smells. With the exception of the children who we share the lobby with, we’re not among serious cases and there’s still much hope.But we all know how being with the children and young adolescents we might feel like the author did, “I can’t look at them”. We put up a good front because we know they are having access to the best care in the world but you know their lives will be shortened and probably certainly more pain and treatments will follow.Please read “Forty Years’ Ware: A Place Where Cancer is the Norm”.     Forty Years’ War  a PDF version .The link to the NYTimes

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Surgeon Relates How Radical Surgery is Rather Crude and a Relatively Blind Procedure

A new and comprehensive web site on prostate knowledge covers news, expert commentary and cancer research including personal case histories.  Unfortunately, in my humble opinion, they fall in the anti screening camp and the lead banner accompanied with a video says “PSA Screening Not Recommended for Men Over Age of 75”.  I don’t know about you but 75 is not nearly as old as I once thought it was especially since I’m going to be 74 in two months. Please let me know your opinion and analysis.

Here’s the site Harvard Prostate Health  In the patient perspective section there’s an excellent article by a surgeon and his wife relating how he explored radical surgery, robotic surgery and radiation; and when he chose radiation. Here are points from the article:
- if there was positive margin after surgery he would have to have radiation. The level of incontinence   with both surgery and radiation is higher than either modality alone.
- as a surgeon he had seen standard radical surgery done and concluded that it’s a rather crude, relatively blind procedure. 

With full credit to Harvard Medical School here’s the article in PDF format. 

Insert article from the Proton Therapy Offers More Effective Treatment (a pdf on PP site)
Description of the RNA Site
Newer Video on Proton Therapy (6 minutes)

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HELLO! What’s the risk of having a blood test?  There is none. There’s a risk to having a heart catheter done but I don’t see the risk of a blood test. PSA tests are non invasive and done for early detection. Early detection leads to easier and more successful cures. More knowledge leads you to choose a treatment with less side effects.  I’ve been in touch with too many forty year olds who have been detected early and are cured and are not incontinent.   

Joe

October 15, 2009
By Johns Hopkins Health Alerts; www.johnshopkinshealthalerts.com

If you are an elderly man, you may wonder if you should continue to have an annual PSA test to screen for prostate cancer. Here are the latest guidelines.

The U. S. Preventive Services Task Force recently recommended that doctors not screen men age 75 and older for prostate cancer. The panel weighed the potential benefits and harms of PSA testing in this population and concluded that the screening was more likely to have a negative impact on these men than a positive one.

The rationale: Prostate cancer is a slow-growing malignancy that may take 10 or more years to produce significant symptoms. Many elderly men will die of another condition before their prostate cancer becomes life threatening. Thus, an abnormal PSA test would lead to the pain and discomfort of a prostate biopsy and unnecessary worry if no cancer is found. If cancer is found and treated, the man will have to contend with side effects, such as sexual dysfunction and incontinence.

Other medical organizations recommend annual screening for men at average risk for prostate cancer beginning at age 50, but they do not address when screening is no longer necessary. And still others recommend screening for all men with a life expectancy of at least 10 years.

Bottom line advice: If you are age 75 or older, discuss the risks and benefits of PSA testing with your doctor. If you get tested and are diagnosed with a low-grade cancer, keep in mind that active surveillance is an option that allows you to be closely monitored but treated only if your disease progresses.

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It could be that your ED is not caused completely by the proton therapy you received.  If you’re in the 70 year old age group the numbers show that 48 % are affected based on a general population. Read more …  Joe

http://www.urotoday.com/browse_categories/erectile_dysfunction/prevalence.html

“Prevalence of ED increased by 10% per year of age. Additionally, increased risk was associated with diabetes, heart disease, lower urinary tract symptoms, heavy smoking, and depression.¹

Prevalence increased with age from 2% in men 18 - 39 to 48% in men 70 years and older.²

A systematic review was conducted on the prevalence of erectile dysfunction (ED) in the general population. Studies were retrieved which reported prevalence rates of ED in the general population including 23 studies from Europe (15), USA (5), Asia (2) and Australia (1). The subsequent estimates for prevalence of erectile dysfunction was 2% in men under 40 years of age, ranging to 86% for men 80 years and older.³

United States

U.S. Prevalence of ED is estimated to be between 15 - 30 million.
See studies and references below.

The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) estimates that between 15 - 30 million men in the U.S. have erectile dysfunction. Approximately 5% of 40-year-old men between 15 and 25 percent of 65-year-old men experience ED.

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Mary Hughes returns to the Proton Center Support Group Meeting  After a holiday vacation the Proton Center Support group is starting up again and the first meeting of the year will held January 28, and will continue on the fourth Thursday of every month.

Mary Hughes, a Clinical Nurse Specialist will be the featured speaker. Mary received an outstanding reception the last time she spoke to our group.  Mary has been with M.D. Anderson for quite a few years and has many awards honoring her skills and work over the years and I can attested to her abilities based on the personal contacts I’ve had with her.  This time she will speak about “Lost That Lovin’ Feelin’” . Meeting Notice emailed

Mary K. Hughes, RN, CNS, has been a clinical nurse specialist in the psychiatry department at The University of Texas MD Anderson Cancer Center since 1990. She helps people diagnosed with cancer who have depression, anxiety or other conditions that require medication or therapy. She also serves on the clinical faculty of Texas Woman’s University in Houston and The University of Texas Houston School of Nursing. Ms. Hughes has won numerous awards for her work with quality-of-life issues for people with cancer, including the 2007 Supportive Care Award from the Oncology Nursing Society. She speaks internationally, nationally and locally on quality-of-life issues that affect people diagnosed with cancer.  

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This article is copyrighted by SpaceCoastMedicine and I would have led you there simply with a link - except when I did that normal way the link says it’s broken and this article could not be found. So here’s the lead in paragraph and a couple of photos by Dr. Nicola Ally

“PCA Second Leading Cause of Cancer Death in American Men

Dr. Nicola AllyAs a radiation oncologist, I counsel many men with prostate cancer (PCA) about treatment options. After skin cancer, PCA is the most common cancer and the second leading cause of cancer death in American men.  The American Cancer Society estimates that over 192,000 men will be diagnosed with PCA in 2009 and about 27,000 men will die.The hormone testosterone drives the growth and development of the gland and PCA. Medications that interfere with testosterone production or metabolism are used to treat prostate disease and PCA.The most common type of PCA is adenocarcinoma. In late stages, PCA can spread to the urinary passage, bladder, tissues around the prostate, lymph nodes and/or  bone.   All Men at Risk for Prostate Cancer  “Hope you find my humor ok.   Joe

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It’s official - On May 22 the Blue Cross Blue Shield (BCBS) parent organization, Health Care Servive Corporation for these four states Texas, Oklahoma, New Mexico and Illinois called Dr. Lee, the director of the Proton Therapy Center to let him know they would continue to cover proton therapy for prostate cancer in Texas.  Also Bob Marckini confirmed that this applies to the other states as well and they did not put the proposed policy in place.  In fact it’s been removed from the BCBS web-site.Thanks to everyone who either wrote or called into to the BCBS headquarters and  Dr. Lee thanks us for all the help.  Your efforts along with a mighty push from the leaders at the Proton Center and centers, helped stave off this second major move to cut the reimbursement for early prostate cancer treatments at proton centers.  The first was Medicare’s move last September when the Centers for Medicare Medicaid Services collected comments about the treatmentThis is huge and if BCBS had gone ahead, then all the other private carriers would have gone along; paving the way for Medicare and the current administration to cut.Our next campaign should be to educate and influence the law makers and analysts who are drafting the new heath care plan in Washington.  The only problem is that effort is moving very fast and not much information is available to study about their approach.Thanks to Luke Mizell who wrote to the Blue Cross Blue Shield executive.  This is the letter he received in response.BCBS LetterJoe LandryJune 2009

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My wife Marcia who’s a water color artist and I just completed a DIY (do it yourself) logo design.  We’re trying to symbolize the outreach and support that the ProtonPals provides without being too maudlin.  The colors are the ones MDACC uses. 

Hope you like it.

Joe Landry

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