By Stephanie L. Graff, MD, and Kelly Shanahan, MD
Dr. Stephanie L. Graff conducted the following interview with Dr. Kelly Shanahan in advance of the 2018 ASCO Annual Meeting in preparation for an Education Session on Monday, June 4, called “When Cancer Hits Close to Home: Treating Colleagues and Loved Ones.” Dr. Graff will present at the session and participate in a panel discussion along with chair Dr. Julia L. Close and speakers Dr. Rebecca D. Pentz and Dr. Ranjana Srivastava.
SG: Tell me about your cancer diagnosis and background.
KS: I was diagnosed with early-stage breast cancer in 2008. I had a bilateral total skin-sparing mastectomy and was back in my office seeing patients in 2 weeks. I don’t think anybody would have recommended that I do that. I didn’t really ask my surgeon. I was in solo private practice. I ended up with a positive lymph node and received chemotherapy. I worked all through chemotherapy. I scheduled my chemotherapy on Thursdays. I operated all day Friday, popped over between cases for my pegfilgrastim. I would be sick Saturday and Sunday, and be back in the office Monday. Lots of patients work through chemo. The financial impact and length of time necessitates it.
I was diagnosed with metastatic disease on my birthday in 2013, after I had been having back pain for several months. Cancer never crossed my mind. Never. There are advantages to being a physician-patient. I had my MRI and PET scan done, then I ran and grabbed a cup of coffee, and went right back to go over my scans with the radiologist. I knew my diagnosis instantly.
SG: So you are standing in radiology with a colleague looking at your own images. Tell me about that. What was the reaction? How did the radiologist react?
KS: I had taken the whole day off work for my birthday. I scheduled the scans. The radiologist wasn’t at my home hospital—I was about 45 minutes away. We pulled the MRI up first. We both just stood there. Shit. Then we pulled up the PET Scan. Double shit. I had bony metastatic disease in every bone. I think it was hard for him too. He is a colleague. He was probably thinking, “This could be me.” He gave me a hug. From all those years of practice, I had learned to stay calm and cool under pressure. I immediately was in doctor mode. I was looking at it like it wasn’t me. I was making a plan.
SG: What does a doctor say to a doctor in that situation? It is a real struggle.
KS: I saw my oncologist within 2 hours of my diagnosis. I walked into his office and he looked me in the eye and said, “I know you know the statistics. You are not a statistic.” The only reason I knew the statistic was because I left radiology and went to my car and googled “mortality statistics with metastatic breast cancer.” I think what he said was really important: that despite everything I knew, despite statistics, each one of us is an N of 1. I really appreciated that.
I was never told about the risk of recurrence, the risk of late recurrence in particular. I was never told about treatment side effects. Taxane neuropathy, aromatase inhibitor arthralgias. No one told me that it could cause long-term side effects that would make it impossible for me to do surgery.
SG: That is a prevalent theme in the available scientific publications on the topic of caring for physician-patients. Physicians directing care tend to assume that physician-patients know side effects, drug interactions, and signs or symptoms that need to be reported.
KS: When I developed my back pain, I was walking up stairs and sneezed. I instantly had severe pain, and I thought, “I pulled a muscle.” When it didn’t get better, I thought I had herniated a disk. Cancer didn’t cross my mind.
SG: What did giving up the practice of medicine mean to you?
KS: I was no longer able to do surgery. Giving up surgery was giving up a huge part of my identity. From the time I finished medical school until motherhood, medicine was my whole identity. Having a child split my identity—part mom, part doctor. I was a really good surgeon. I loved surgery. I was respected for my surgical skills. Having to stop was hard. Not just the emotional standpoint of losing my identity, but it came with a significant financial burden. When you are a private practice OB/GYN, surgery is what pays you.
Thank God for my first employer, who encouraged me to get a same specialty disability policy, and for my accountant, who told me to pay for it out of my pocket rather than out of my practice’s budget. I have permanent grade 2 neuropathy. I can’t hold a scalpel. I can’t palpate internal organs. I would have a hard time feeling a breast lump.
It was hard. Obstetrics and gynecology wasn’t just what I did, it was who I am. You actually were one of the people who said to me, “You are still a doctor.”
KS: I would say, “I used to be a doctor.” It took me a long time to say “yes.”
Then I found advocacy. I went to a patient event and for the first time met other people with metastatic disease and saw them doing advocacy. It has given me a whole new purpose. I feel like I am still making a contribution to society, and it is just as important.
SG: Absolutely! Now tell me how you chose your physician team in the adjuvant and metastatic setting? Did you at any point have an appointment to establish the rules of engagement, if you will? To answer the question, “How are you going to doctor a doctor?”
KS: I chose my surgical team because I knew what I wanted. I knew I wanted skin-sparing bilateral mastectomy. In 2008 that wasn’t as widespread, so the direction was clear. I went to University of California, San Francisco. Interestingly, a friend and patient had just been diagnosed with breast cancer a day or two before me, so we went together. We had back-to-back appointments and sat through each other’s consultations. The surgeon at UCSF, one chart under each arm, laughed that he had experienced with all sorts of “couples”—husband-wife, same-sex partners, sisters, mother-daughter—but he had never had a physician-patient couple.
He treated me like a patient. I am really grateful. He made me talk about the options.
SG: Was there any part of you that bristled at that? Maybe you felt like he was talking down to you? Or did having a patient-friend at the appointment with you make it more palatable somehow?
KS: No. I really appreciated being treated like any other patient. The surgical team gave me information like I was anyone else. The doctor spoke plainly. I’m not an oncologist. He recognized that it wasn’t my area of expertise.
SG: What do you think is the biggest advantage of being a physician-patient?
KS: The biggest advantage is that I don’t have to wait. When I had my PET scan done, I got my scan, grabbed a coffee, and then looked at the results with the radiologist. I knew within 45 minutes. I didn’t have to wait for transcription, for the result to get faxed, for the oncologist to review, for the oncologist to call me, for the appointment to discuss the results. I knew right away.
I can also read the literature. I can understand scientific papers better than an average patient—although I think the medical community underestimates how well informed patients are about their condition.
SG: The metastatic breast cancer community in particular is a very engaged and well-educated community. I know that sometimes a big barrier is access to information. Do you want to comment on that?
KS: So many articles are published behind paywalls. If you don’t have a subscription, access to the article costs money. The patient community follows experts on Twitter, attends scientific meetings, have Google alerts set for their disease—they want to know. I want to read the full article. We may know more about what is up and coming in our disease, especially compared to generalists. I am laser focused on bone-only ER+ metastatic breast cancer. I am so thankful for open access journals. I am so thankful for the peers and colleagues who share those articles with me. All patients need more access.
SG: What do you think is the biggest disadvantage to being a physician-patient?
KS: It is two-pronged. I know too much. I don’t know enough. There is the assumption that because I am a doctor I don’t need explanation. But I am not an oncologist.
SG: Let me ask that again in a slightly different way. Do you see being a physician-patient as an impairment or as an advantage?
KS: I think it is a disadvantage. I think the assumptions about my medical knowledge and my ability to work the systems hurt me. When I mention back pain or neuropathy, no one offers me physical therapy. They assume I’ll ask if I want it or need it.
SG: Do you read that as reluctance on the part of your treating physician to have the hard conversations? For example, it might be awkward for a physician peer to tell you that you are depressed and need to go to therapy, or gaining weight and need to work on weight loss goals?
KS: I think that is part of it, especially in regards to weight. My weight has gone up and down—I really love that my oncologist will comment on it. One of my oncologists is a man, and he in particular seems reluctant to do breast exams. Sometimes my physical exam or review of systems isn’t as careful as it might be if I weren’t a physician.
SG: Looking back at the physicians who have provided care for you, if you were going to come up with a rule book, what would you say?
KS: Treat me like you do everyone else. Treat everyone like it could be you.
SG: Do you think your knowledge base creates more or less anxiety than non-physicians living with metastatic breast cancer?
KS: That has evolved. I think when I was first diagnosed, it created more anxiety. I knew how slowly research develops. But as I have been living with metastatic disease over the last 4 years, I am less anxious. It is what it is. Both of my oncologists are good about discussing next steps. I always have a plan. That has helped my anxiety a lot. I have a lot of confidence in my team.
SG: What traits do you look for in the physician/ physician-patient relationship? Expertise? Communication? Interpersonal relationship? Privacy concerns?
KS: 1. Honesty 2. Partnership 3. Compassion.
I want my doctor to be 100% honest with me. I want to know everything. I want them to listen, I want them to respect my questions. I want to be human. There needs to be more humanity in medicine.
SG: Yes. That is really beautiful and true. That’s what anyone would want.
Dr. Shanahan is a board-certified OB/GYN living with metastatic breast cancer. She practiced for 25 years prior to retiring her practice due to her metastatic breast cancer, cancer-related symptoms, and treatment-related side effects. Dr. Shanahan is the former medical director of METUP, volunteers and reviews grants for Metavivor, is a consumer reviewer for the Department of Defense breast cancer research program, and is participating in the AACR Scientist-Survivorship program. She is a member of the Metastatic Breast Cancer Alliance and Global Advanced Breast Cancer Alliance. Dr. Shanahan is on Twitter @Stage4Kelly.
Dr. Graff is a breast medical oncologist. She is the director of the Breast Cancer Program at Sarah Cannon Cancer Institute at HCA Midwest Health and the associate director of the Breast Cancer Research Program at Sarah Cannon Research Institute. She serves on the ASCO Research Community Forum. Dr. Graff is on Twitter @DrSGraff.