Patient Stories: Brenda Levin

Brenda Levin

Brenda Levin specializes in using acupuncture, massage, Chinese herbal medicine and nutrition counseling for oncology patients, a path she chose after practicing as a shiatsu massage therapist in Philadelphia. “I worked with a lot of oncology patients in my shiatsu practice. Massage can be incredibly soothing for them,” she recalled during a recent conversation; “Patients get poked, pricked and prodded constantly as part of their treatments and there can be many uncomfortable side effects. Massage can help calm nausea, alleviate treatment and cancer-induced pain, calm stress and anxiety, and the power of touch simply has so many benefits.” 

Being enamored with the holistic approach of Chinese medicine, she enrolled at a school called the National University of Natural Medicine in Portland, Oregon in 2010 to deepen her understanding of its practices. “I had a rotation shift at a clinic that was oncology-focused along with other autoimmune diseases, so I had a lot of exposure to cancer patients, what they were dealing with, and the emotional toll of it all,” Brenda explained; “I saw how amazing acupuncture and other aspects of Chinese medicine was to help patients get through their cancer journey. Patients would repeatedly tell me what a lifesaver it was, to be able to receive this type of care. It was great clinical feedback.”

In a stunning twist of irony, Brenda’s experiences were also a preparation for her own cancer journey. In 2017 she was diagnosed with metastatic breast cancer.

“I probably had cancer growing in my body while I was working my way through Chinese medicine school, but I just didn’t know it,” she added. Brenda had been experiencing symptoms like fatigue, but had always chalked it up to graduate school burnout. “The strangest symptom that I couldn’t figure out was the loss of my libido,” she remembered; “which was very odd for me because I’m a very affectionate person and, as a person who deeply believes in the healing power of touch, I not only appreciate human touch, but always craved it.”

Chinese medicine links exhaustion to the kidneys. “Putting the pedal to the metal on an already empty tank of gas will deplete your Kidney Qi,” Brenda explained; “so that’s what I figured the problem was.” She initially went home to rest, but fell into starting her own practice instead. Because of that challenge, she put off getting checked for any medical issues. But in March of 2017, her 40th birthday was approaching. “I noticed some abnormal changes in my breast,” she recalled; “my right breast suddenly became swollen and painful. When a swollen lymph node appeared in my armpit, I knew that the outlook was looking worse and worse. I had a number of symptoms and I was quite concerned.”

When the scans came back they showed that Brenda had stage four metastatic breast cancer and it had already spread to her bones. She started treatment immediately, but she didn’t stop working because it was the only thing keeping her mind from the anxiety. “When you hear you have metastatic cancer, it’s normal to think you’re going to be dead within a year, if not sooner,” she concluded; “So I started planning my funeral. If you ever want to contemplate death, get a cancer diagnosis.” 

But Brenda made it through the first year. And then the second year. And then the third. “I’m still here!” she said with a laugh; “I’m still on my first line of treatment, but when it comes to metastatic breast cancer, treatments are palliative. Oncologists are not treating to cure, they’re treating to keep you living with the best quality of life for as long as possible. I’ve had unpleasant side effects, but in the grand scheme of things the side effects are nowhere near as bad as I had imagined. I do weight training and cardio in my apartment. I’m energetic and present.”

As an oncology acupuncturist, Brenda has always encouraged her patients to understand their health data because it can help improve the care she gives them. “I treat a lot of patients who don’t have any idea of their own diagnosis,” she revealed; “they do not know any better than simply to follow the doctor’s recommendations. However, I need to know what kind of cancer they have and—with regard to breast cancer—is it hormone positive or negative? Triple positive or negative? What receptors are involved? If I know the details of the diagnosis and the treatments that patients are receiving, I can better treat them with Chinese medicine.”

In oncology acupuncture, where you put the needles depends on her patient’s data. “You want to stay away from things that may negate the effects of pharmaceutical treatments,” Brenda explained; “However, cancer patients are often overwhelmed as is. Having to collect all that information and put it together is a lot to ask them to do, especially at the onset and trauma of an initial diagnosis. In fact, I think I scared away a potential patient recently because I asked her for her pathology report. I believe I was requesting too much information from her in the midst of a scary diagnosis..”

Because of her experience as both an oncology acupuncturist and an oncology patient, Brenda now uses Ciitizen to collect her health data for her. “When I was first notified about Ciitizen and asked to join, I was like ‘Yes!’ because it’s so nice to have all of our records in one place,” she continued; “You really have to advocate for yourself when you have cancer, so to have access to your own information is extremely empowering for self care.”

She also continues to inform her patients about the benefits of controlling their health data, both for her own practice and for their continued treatment elsewhere. “We should be able to access all of our data and access our images to see what the doctor has said,” she added; “If you want to get a second opinion, or you’re traveling and need to go to the hospital, you need your records. That’s why I’m so excited to see Ciitizen working with Breastcancer.org. I love the support they give to patients and I’d encourage other community members to check out this partnership.”

Join Brenda and Breastcancer.org, and sign up with Ciitizen to take control of your health data.

One Comment

  1. Alan

    Inspiring interview with a knowledgeable patient/healer!

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