Call to Action
Patients share firsthand experiences and guide care improvements
April 26, 2023 | Paul Govern
On June 26, 2020, Maheen Porter, then age 30, called her husband, Austin, into the bedroom of their Nashville-area home to join a phone call from a nurse practitioner at Vanderbilt-Ingram Cancer Center. Porter sat down on the floor for the call, which concerned results of her recent breast mass biopsy. The nurse informed the couple that Maheen had triple-negative breast cancer.
“It was devastating,” said Porter, a pharmacist. “I was in shock. It really didn’t make sense. I couldn’t process what I was being told, because I just didn’t understand where it came from. I mean, there’s no history of cancer of any sort in my family. And especially with me being at such a young age — getting this diagnosis right at the beginning of my career, when I’m just finishing my postdoctoral residency training and excited to get out in the workforce.”
Last year, Porter, in remission from cancer — her treatment having included five months of chemotherapy to shrink her tumor, followed by a double mastectomy and two phases of reconstructive surgery — became a member of Vanderbilt-Ingram’s Patient and Family Advisory Council. The council, which had its first meeting in April 2022 over Zoom, was chartered along the lines of three other patient and family councils that have formed at Vanderbilt University Medical Center (VUMC). In 1995, the first of these formed at Monroe Carell Jr. Children’s Hospital at Vanderbilt; others followed for Vanderbilt University Hospital (VUH) and Vanderbilt Psychiatric Hospital.
Vanderbilt-Ingram’s council, which meets six times a year, was organized by Julie Bulger, manager of Patient and Family-Centered Care.
“We are committed to bringing our patients’ and their family members’ voices into how we care for them; we strive to be engaged partners,” Bulger said. “We have an incredible leadership team truly listening and willing to make positive changes based upon this input.”
Rob Mills, a local business executive, chairs the council.
“The council is truly about improving the overall patient and family caregiver experience. It’s new, so we’re kind of all learning through this together,” Mills said.
Council member Laurie Lawrence, MD, worked as an emergency medicine specialist at VUMC for 26 years, retiring in early 2020. In December 2021, Lawrence’s husband, retired anesthesiologist Wayne Ritt, MD, was expecting to go on a ski trip. Instead, after he nearly passed out during a Vanderbilt primary care visit, he was admitted to VUH, where a bone marrow biopsy came back positive. While still in the hospital, Ritt began treatment for acute myeloid leukemia. His kidney function, it turned out, was already affected.
In speaking with a sampling of council members about their initial patient conference, each recalls difficulty processing the information when their diagnosis was first discussed.
“Everybody was so kind, and they were pretty forthright, and I think communicated pretty clearly,” Lawrence said, “but you’re just in a state of shock and almost don’t hear what’s said, after the word ‘leukemia.’”
Marie Mills, the wife of council chair Rob Mills, woke up one morning in May 2021 with severe pain in her midback. The couple found themselves visiting the ER at a nearby hospital, where a doctor confirmed that the problem was kidney stones.
“It was our daughter’s fifth grade graduation, so we were in a rush to get to her ceremony, and as we were walking out of the ER a doctor grabbed us and said, ‘Hey, are you aware there’s a mass on your lung?’
“Essentially, he signaled to us, ‘You have cancer.’”
The moment was surreal, Mills said. “My wife just kind of fell back onto the gurney, didn’t pass out or anything, but the wind went out of her sails, and it was almost like I was frozen in a fog.”
Stressful days followed, with Marie undergoing a lung biopsy and not hearing anything from the local hospital where the procedure had been performed. “We had to call several times to get the results. And finally, we talked to a nurse who said, ‘Yeah, it’s positive for cancer. Didn’t anyone call you? And by the way, it’s non-small cell lung cancer.’” This diagnosis would be repeatedly revised, until weeks later, when Marie, having switched to VUMC, received a definitive diagnosis: colon cancer. She’d had a screening colonoscopy and gotten a clean bill of health only three years prior. “But thankfully,” Rob Mills said, “somebody advised us to repeat the colonoscopy.’”
Council focus areas
Mills explained that the council, as a start, has chosen to focus on three related areas: the Vanderbilt-Ingram new-patient experience; improved patient communication, with specific regard to helping patients navigate complex health care visits; and more reliably connecting patients with resources and support services.
Clint Koerkenmeier, MHS, RN, associate nursing officer at Vanderbilt-Ingram, is council co-chair. “The goal is to make the experience better for our patients, and the best way we can do that is with the help of the people who have walked through those halls as patients and gone through those treatments,” he said.
Koerkenmeier learned that patients often were unaware of important resources at Vanderbilt-Ingram. For example, some council members weren’t aware of the availability of in-house financial counselors, or of various online patient orientation materials.
Lawrence is particularly focused on communication for patients and their family caregivers. With her husband having been admitted on an emergency basis and without a diagnosis, there had been no opportunity for typical cancer patient orientation. At discharge from VUH, “I was given a list of his medicines; I was told where to go, but I felt like I got dropped in a foreign country. I felt overwhelmed.
“And I’d worked here for 26 years, walked by the Cancer Center on my way to the emergency department every day that I had a shift. And I thought, ‘Golly, if I feel overwhelmed, then other people must feel overwhelmed too. When I was a health care provider, I thought I was a great communicator. Now I’m kind of second-guessing myself, because I think maybe I didn’t communicate as well as I thought.”
Porter said changes issuing from the group’s discussions are beginning to positively affect patients. She mentioned as an example a new text message that goes to every patient before their first appointment, linking to information on Vanderbilt-Ingram patient resources.
A few years before her triple-negative breast cancer diagnosis, Porter was diagnosed at VUMC with thrombotic thrombocytopenic purpura, or TTP, a rare, life-threatening autoimmune disorder that causes internal bleeding and the formation of blood clots in small blood vessels throughout the body. “I was very lucky that they even diagnosed TTP, it’s so rare,” she said.
Over several months, intensive treatments were needed to reset Porter’s immune system. A few months following these treatments, in a complication likely triggered by TTP, she developed a mass in her breast (on the same side where a cancer tumor would eventually be found). She was seen at the Vanderbilt Breast Center and received a lumpectomy at VUMC.
“After all that treatment for TTP, my immune system never fully recovered. But I was in the middle of finishing my postdoctoral residency training, so I just rushed back to work.” Porter’s lumpectomy was followed within a few months by a bout of pneumonia and various other illnesses and symptoms requiring several visits to the ER. Her cancer diagnosis came as she completed her clinical pharmacy residency.
Triple-negative breast cancer is so named because the cancer cells lack receptors for estrogen, progesterone and human epidermal growth factor, or HER2, and this precludes various treatments that might apply in other types of breast cancer. Porter said standard care for triple-negative breast cancer involves some of the oldest, harshest chemotherapy drugs on the market, and only 35% to 40% of patients fully respond.
She responded splendidly to the standard treatment, having a so-called pathologic complete response.
Her cancer treatment was not short of complications. Within weeks of undergoing a double mastectomy, she came down with fever and chills and visited the emergency room at VUMC, fearing a post-op infection. The problem turned out to be a pulmonary embolism.
Upon completing months of treatment for the embolism, Porter scheduled a consultation with a cardio-oncologist. This led to detection of a mass 1.5 inches in diameter in the right atrium of her heart, a calcified thrombus adhering to the right atrial wall, requiring open heart surgery. The mass in her heart was due to a rare chemo port placement complication. And her clinical team concluded that the pulmonary embolism a few months prior had likely originated from the same source.
“A really big portion of all of my diagnoses, I do want to note, have resulted from me advocating for myself,” Porter said. “I’m very vigilant about getting things worked up and followed up, because at this point, I know my body very well, and I know when something is wrong, out of the ordinary…it’s important to find resources so you can educate yourself, be able to advocate for yourself. And it’s important not to be afraid to ask a lot of questions during your clinic appointments.”
Porter is in remission from both TTP and cancer. Due to hormonal side effects of chemotherapy and steroid treatments, she had rapidly put on 45 pounds during treatment, but with dietary changes, physical therapy, and the help of a local program called Survivor Fitness, she’s back to her normal healthy weight.
Lawrence’s husband, Wayne Ritt, was in remission from leukemia when, last Thanksgiving Day, he discovered two lumps, one on his neck, the other on his chest. He died of leukemia on Jan. 11.
With all the doctors’ appointments and treatments, a cancer diagnosis turns your life upside down, said Lawrence, speaking in December 2022, soon after Ritt’s cancer relapse. “But also, it affects, I think, the way you look at your life. Because suddenly you realize how precious life is, in that your health status can change just in the flip of a coin. My husband has said that all of us have an expiration date, we all have X number of days left. And do you want to spend your days worrying about the small stuff that doesn’t matter, or just let it go? I think it’s helped me let a lot of things go.”
Marie Mills received first-line treatment for colon cancer, beginning with 10 weeks of chemotherapy, to which she responded extremely well, Rob Mills said. Multiple surgeries for a related issue were followed by a year of low-dose chemotherapy. Since September, she has been in a clinical trial of a drug targeting her cancer mutation.
“She is stage 4, considered palliative care, so right now there’s not a curative approach,” he said. “That being said, she is in treatment, and her response is strong, and she feels excellent.
“We really leaned into this and said, ‘We’re not going to have the mindset that this is palliative. We’re not going to have a mindset that she is not going to be here.’ Our approach is that none of us have control of our lives, so we maintain a positive outlook and put trust in our doctors while doing everything within our control to fight this disease and keep hope for that cure.
“We do this without forgetting the realistic possibilities. We have gained a new perspective that has brought us closer, made vacation and family time a priority, and created a focus on making a lot of lasting memories.”
Speaking of her triple-negative breast cancer, Porter said, “It’s a life-changing diagnosis. Nothing is the same. I feel that this entire experience has made me a lot stronger, and it’s brought my husband and me even closer together. It’s taken a lot to overcome what’s happened in the last four years.”