Meet Pam Runge, breast cancer survivor and patient advocate
Pam Runge, breast cancer survivor, knows how important it is to be your own best advocate. Now she is going the distance to make sure other women are armed with knowledge of their treatment options.
Pam was selected by the National Breast Cancer Coalition to attend advocacy training in Washington D.C.
A cough and shortness of breath stopped Denver, Colorado resident Pam Runge in her tracks as she was training for a big trekking trip in Nepal. After being diagnosed with a stage IV breast cancer recurrence along her mediastinal lymph nodes (mediastinum is an area in the central part of the chest, between the lungs), her oncologist said, “You might as well hope for the best and plan for the worst. This is what will take you off the earth.”
Pam says she was shaken, “I was a maniac on the computer that weekend. I bawled my head off, but that was also the weekend I initially found TomoTherapySM.”
She began to seek answers that led her to Dr. Mark Hazuka, a radiation oncologist at Memorial Health System Cancer Center in Colorado Springs. Dr. Hazuka was confident he could successfully irradiate the lymph nodes using TomoTherapy technology since they were isolated in one area.
Pam decided to hire a second oncologist to be responsible for her overall care. He was skeptical and did not believe in radiation for stage IV, systemic cancer that had spread from the original tumor site. Instead of trying TomoTherapy radiation treatment, she trusted her doctor’s advice and went through 16 weekly chemo treatments of Avastin™/Taxol™, followed by her third hormone therapy.
Five months later the cancer returned.
Pam hired her third oncologist and learned more about TomoTherapy radiation treatments. Pam says this new oncologist was not familiar with TomoTherapy but was willing to listen and do some research himself. He agreed that this would be a good option.
Pam admits that she still had reservations about the side effects associated with radiation and the three-hour roundtrip drive from Denver to Colorado Springs for TomoTherapy treatment.
After more research and reading other patient stories on TomoTherapy’s website, Pam was convinced TomoTherapy treatments were right for her and decided the drive would be worth it.
“I don’t ask for help very often but this time I needed to lean on my friends and coworkers.”
Pam drove her treatment decisions while her friends assisted on her road to recovery.
Pam sent out an e-mail asking for friends who would be willing to drive her to each TomoTherapy treatment appointment. Immediately, the e-mail responses began to flood in, each person taking a date until Pam had company for each roundtrip over a four-week period.
Dr. Hazuka also did his part, aided by TomoTherapy technology which allowed him to shorten Pam’s radiation course to make treatment more convenient. “Four weeks of treatment with hypofractionation allowed us to remove a full two weeks of treatment and travel time for Pam. Biologically, a four-week course on TomoTherapy was equivalent to a six-week course if we had used conventional radiation techniques,” explained Dr. Hazuka. “Additionally, it would have been difficult, maybe impossible, to use conventional radiation since her right breast had been previously irradiated. TomoTherapy’s intensity modulated radiation therapy (IMRT) and helical delivery were key.”
Dr. Hazuka continued, “She had 50 Gray in 20 fractions. We treated the mediastinum and periclavicular lymph nodes and recognized the fact that her right breast had been previously irradiated ten years ago. We put constraints to the right breast and chestwall. That is why TomoTherapy was so ideal for Pam’s treatment because she had been previously irradiated and we were able to assign less dose to those areas.”
Looking back, Pam says her treatments went very smoothly and while she did experience trouble swallowing towards the end of treatment, it was short-lived. “It’s amazing how quickly the body heals. Three weeks after treatment, I was eating nachos again.”
Dr. Hazuka agrees that Pam tolerated treatment very well and he was not surprised. “I tell patients upfront that if you’ll be treated on TomoTherapy, you will experience fewer side effects than if you are treated on another machine.”
Now Pam is arming herself with more information so she can be an advocate for other women facing life threatening breast cancer diagnoses.
“I’ve been through this a few times, and I’m a really strong person. So I say, ‘Okay, I’m not gone yet. There must be something I’m supposed to be doing here’. And I’ve come to the conclusion that, yes, I can help other women.”
Pam is putting that goal into action. In spring of 2008, she traveled to Washington D.C. for advocacy training on behalf of the National Breast Cancer Coalition (NBCC). Pam explained, “With all due respect, the NBCC’s mission is to forget the pink and get out the ink. This year we are asking Congress for $150 million to fund breast cancer research. The bill has already been passed by the House and Senate.”
Pam has learned a lot about breast cancer, and is prepared to help other women do the same.
Pam calls the trip, “incredible.” For three intense days she heard the latest on breast cancer research, quality care and access, and the politics of healthcare. She learned about the nuts and bolts of the political process and the nuanced strategy necessary to achieve the NBCC’s goals. Then a full day was spent on Capitol Hill where breast cancer advocates nationwide held over 400 meetings. These women educated members of Congress and their staff about NBCC’s new Framework for a Health Care System Guaranteeing Access to Quality Health Care For All and pushed them to renew their efforts to pass the Breast Cancer and Environmental Research Act.
But Pam did not stop there, she has taken her advocacy one step further after returning from the Washington D.C. trip. “I was chosen for the NBCC’s Project Lead after an involved process to get appointed. Only a few breast cancer survivors from each state are chosen to complete intense training which gives us the opportunity to sit on clinical trial and peer review panels. We actually get to help decide what should be studied, how much money should go to each study and if a particular medication is right for that trial. I received intense scientific training so coupled with my own experience, my opinion is a worthy and respected opinion among researchers.”
Dr. Hazuka is impressed by Pam’s involvement, “I think her advocacy is unique. I have a few prostate cancer patients who have taken a role in patient advocacy and support groups but I think Pam has gone beyond that. I don’t think I’ve ever had a patient quite like Pam. She is a very sophisticated woman and, over the years, has learned a lot about breast cancer.”
Pam’s experience with breast cancer has ignited a spark to continue helping others. “I think I’m supposed to be out there pounding the pavement, encouraging women to get two or three opinions.”
“Women come to me for advice and it’s tough to be diplomatic sometimes because it’s a very sensitive issue when dealing with someone else’s health. My message is really to be your biggest advocate and remember that not every doctor is as informed as the other or knows the latest in treatment.”
While the areas treated by TomoTherapy responded well showing no recurrence on a recent follow-up scan, Pam was unfortunately told that a couple of tiny spots were found in her liver. She opted to have those treated with radiofrequency ablation on June 13, 2008 and September 18, 2008, and chemotherapy to treat any micro-metastases as her oncologist advised.
