Who are we?
The Brotherhood of the Balloon (BOB) is a group of prostate cancer patients who have chosen conformal proton beam radiation therapy (proton treatment). The organization was formed in December 2000 by Bob Marckini and several other patients of the Loma Linda University Proton Treatment Center. Today we have nearly 9,000 members from all 50 states and 39 different countries. Members represent all operating proton centers in the U.S. as well as four proton centers in Europe and Asia. Financial support for the BOB is provided by Loma Linda University Cancer Center.
Who is Bob Marckini?
BOB founder, Bob Marckini, was diagnosed with prostate cancer in 2000. After watching his brother undergo a radical prostatectomy (surgical removal of the prostate) in 1998, he vowed to himself that if he were diagnosed with prostate cancer, he would do exhaustive research to determine if there were a reasonable alternative to surgery.
Two years and three biopsies later, Bob was diagnosed and he began his research. He read all available technical literature on and off the Web; he interviewed dozens of prostate cancer patients; and he ultimately decided that proton beam radiation therapy at Loma Linda University Cancer Center in Loma Linda, CA was the best option for him.
After treatment, Bob and a few fellow patients formed a group so that they could keep in touch with each other. Bob took the role of creating and sending email updates/communications. That group grew from six original members to over 8,000.
The National Association of Proton Therapy (NAPT) recently recognized Bob Marckini with their Lifetime Achievement Award at their annual conference held in New Orleans, LA. Founding executive director of NAPT, Len Arzt said, “Next to Dr. James M. Slater (Loma Linda University Cancer Center), Bob Marckini has done more to increase patient access to proton therapy than anyone else. As the founder of the Brotherhood of the Balloon, the only patient advocacy group that can claim the majority of patients treated with a particular modality as members, Bob has provided thousands of prostate cancer patients with objective information that enables them to make informed choices about their care.”
Sixteen years after his proton treatment, Bob, age 73, still believes proton therapy was the best decision he's ever made.
What do we do?
The purpose of the BOB is to provide an avenue for communications with former and current proton patients where members can share and/or learn about any subject related to their treatment, the healing process, and preventing a recurrence. The BOB and many of its members also actively promote proton therapy for prostate cancer at public forums. Most willingly share their experience of proton treatment as a way of helping newly diagnosed men and their families decide among the varying, and often confusing, prostate cancer treatment options.
Who are our members?
Members represent people from all walks of life including medical, science, engineering, education, clergy, legal, agriculture, law enforcement, building trades, large and small business, airline, government, finance, military and the arts. One interesting fact is that an increasing number of men from the medical profession are choosing proton therapy to treat their prostate cancer.
Click here to read personal, comprehensive testimonies written by our members about their diagnosis, decision to receive proton therapy, their journey through treatment, and their life years after treatment. Or, read shorter stories about our members' lives during and after proton treatment.
If you wish to contact some of our members, all former proton therapy patients, to learn firsthand of their experiences, email Deborah Hickey at DHickey@protonbob.com for a list. Note that we have over 30 former proton patient reference lists. These include: Former proton patients with Crohn's Disease; former patients on blood thinners at time of treatment, former patients with pacemakers, former patients with enlarged prostates, former patients with high Gleason scores, and many more. If you'd like to receive one of these lists, please send an email to DHickey@protonbob.com.
What are the benefits of being a member?
There is no dues. Membership and all that goes along with it is free. We aim simply to inform and educate our members, as well as those who are newly diagnosed with prostate cancer, about proton therapy as a non-invasive treatment option with minimal side effects and excellent cure rates.
You get access to thousands of other members.
The BOB maintains a private database of our 8,000 members, which includes vital statistics, pre-treatment cancer stage, follow-up PSA records and other personal information. As a member, you have the ability to contact these men.
You will receive a monthly newsletter.
We issue a FREE 15-20 page monthly email newsletter to our members ("BOB Tales"). For those members who do not have computers or email access, we snail mail printed newsletters each month.
Fundamentally, the newsletter is utilized to advance our mission. That mission is to:
- Provide communications, information and support to our members in order to keep them connected and informed;
- Help promote proton therapy worldwide by continually educating members on proton therapy benefits and developments, and providing them with information they can use in their communities;
- Encourage giving back to support proton therapy research.
Newsletters typically include the following sections:
- A personal introductory letter written by BOB founder Bob Marckini, or Bob's daughter with whom he works alongside, Deborah Hickey;
- Recent news reports on prostate cancer, proton therapy and other prostate cancer treatments with comments by the BOB;
- Health insurance information;
- Prostate cancer and proton therapy-related events, including details and photos of prior events;
- Personal BOB member stories on treatment experiences and life after treatment;
- Member feedback;
- Health and nutrition tips;
- Photos, brain teasers, humor, and an inspiring final thought;
- A lot more ...
We'll send you a 62-slide PowerPoint presentation to spread the word about proton therapy to your community.
We offer a comprehensive 60+ slide PowerPoint presentation to all members to present to and share with their communities (e.g. Rotary Club, Church Group, Support Group, friends and family, etc.). The presentation, which includes charts, graphics and photos, is intended to 1) educate people on prostate cancer awareness, detection and prevention, 2) help people understand the prostate cancer diagnosis, 3) provide an overview of the major treatment options, 4) provide information about proton therapy, and 5) encourage people to become educated and proactive in this process. Speaker’s notes are included.
If you are a BOB member and would like a copy of the PowerPoint presentation, just ask.
Learn about and join proton therapy-related events in your area.
Proton patient reunions and related events are happening all over the country. We alert members of upcoming events in their area including attendee information, speaker information, planned activities during the event (we have a lot of golfers in our group!) and contact information.
There is an annual golf tournament of the PGA (Proton Golfers Alumni) that takes place every summer in Nevada. This event attracts BOB members from all over the country and is growing every year.
Take the opportunity to be part of an active and supportive group of great men.
The BOB brings together men who have been through a similar experience—being diagnosed with prostate cancer and the arduous research process from diagnosis to treatment. Like any support group, we provide a safe place to share information and discuss ways to cope with the challenges following a cancer diagnosis.
Members are encouraged to write to us about their feelings and experiences, submit their feedback on the BOB, their proton treatment, or anything else related to their prostate cancer. We include member feedback in every monthly newsletter as well as on our Facebook profile where “fans” can post comments. We also encourage prospective members to contact our members to learn firsthand of their experiences. This not only helps the prospective patient find answers to their questions and relieves them of their stresses and fears; it motivates former patients to build awareness about proton therapy and feel good about helping others.
Being a part of the BOB can be beneficial in many ways. We provide the opportunity for proton patients to:
- Enjoy a sense of belonging and a chance to learn from others;
- Obtain support from others coping with a cancer diagnosis and treatment;
- Expand their knowledge about prostate cancer and proton treatment;
- Learn about medical insurance for proton therapy;
- Keep on top of relevant news stories;
- Learn how to enjoy life after cancer and increase their sense of control in dealing with cancer;
- Reduce feelings of isolation.
Not yet decided on treatment?
We welcome you to contact our members directly via email or phone to learn about their personal experiences of proton treatment. If you're interested in communicating directly with former proton patients, just ask.
What is the significance of the name, "Brotherhood of the Balloon?"
During treatment, the proton beam is focused on the prostate gland plus a 12 millimeter (half-inch) margin around the gland. Treating this extra margin helps to kill any cancer that may have escaped the gland. This margin of safety may include part of the rectum, which is adjacent to the prostate. At some proton centers, in order to protect the posterior (outside) wall of the rectum from radiation, a small, lubricated balloon is inserted into the rectum and inflated with water prior to each treatment. A secondary function of the balloon is to help immobilize the prostate, by pushing it up against the pelvic bone.
So, our fraternity has the infamous “balloon” as the common denominator for many members.
Incidentally, when the BOB was formed in 2000, Loma Linda University Cancer Center was the only hospital-based proton center treating prostate cancer; they used a balloon. When a few fellow patients finished treatment, they decided to “form a small group to stay in touch” and they jokingly referred to themselves as the “Brotherhood of the Balloon.” These men, including Bob Marckini, never imagined the group would grow to more than 8,000 men.
Who can become a member?
The only criteria for membership in the BOB is having been diagnosed with prostate cancer and choosing proton treatment. One need not have completed proton therapy to join.
Have more questions? Contact us.