An Argument in Favor of Switching Doctors
Plus, Rachel Aviv at City of Asylum and a related workshop
I went to see my oncologist last week and to my great surprise, was very glad I did. Readers may remember that this doctor is not the physician I wrote about in my book HEALING. I switched doctors after the question of whether I should be on the drug Tamoxifen or Arimidex to prevent a breast cancer recurrence became a fiasco that messed me up physically for over a month. At some point when we were trying to figure out the best treatment for me, that doctor said that if I didn’t want to go back on Tamoxifen, “We could just have your ovaries removed; it’s outpatient surgery.” I’m hoping it’s clear why the casual mention of an oophorectomy would be enough to get me to say, “Enough!” and look for another MD.
The new doc was recommended by my surgeon friend Josh. He’s East Indian and says “dear” a lot in a way I find, well, endearing. At my most recent visit I told him about hiking Grand Canyon in May and he joked that I was showing off, which made me laugh. In other words, he’s kind and human, but best of all he listens and he’s thoughtful.
It’s the thoughtfulness that I’m happy about now. When I made the appointment, his nurse told me he likes to have patients come in once every year. That seemed fine and at the appointment, he explained why. About 1% of women with my breast cancer diagnosis will have a recurrence, usually within five or six years, but it could be as many as ten. Oncologists typically do not do yearly PET scans to look for metastatic disease in women with cancers like mine. My oncologist therefore has women come in once a year and does an exam and asks questions designed to ferret out symptoms of a recurrence.
No one, not the medical or radiation oncologist, nor the breast surgeon, had ever told me that before. Since no one ever sat down and talked over my prognosis with me that’s not surprising, but it’s really important clinical information. It’s also emotionally important to know about the recurrence risk, because I do feel a societal pressure to say that my cancer is over and I don’t worry about it anymore. But I do worry about it, especially right now, in September, the month when I was initially diagnosed. My annual mammogram is also in a couple of weeks and that makes me worry, too. My doc talking to me about recurrence risk essentially validated my instinct to worry. Some worry is appropriate because the risk of a recurrence is not zero. I don’t worry excessively, but I haven’t totally stepped out of cancer’s long shadow. Sometimes it’s on my mind and I’m better able to put my worry in proportion as a result of what I learned from my new oncologist.
In a previous newsletter I encouraged people to switch doctors if they are able to and really are not happy, or are disappointed with the one they are seeing. I know it can be hard to do that, and for people living in more rural parts of America, switching physicians may not be possible. But if you are not grooving with your doc, and change is possible, then do it! I have zero regrets about changing MDs because my first oncologist lost my trust and my second oncologist has earned it by listening, explaining things clearly, and being thoughtful in his recommendations.
Change is hard—that’s a truism because it’s true. But changing doctors when needed, whatever the reason, can be a wonderful thing to do for oneself. Doctors, nurses, and other health care workers are there to help, to treat and to serve. If as a patient one feels unhelped, badly treated and ill-served, the solution is to try for better. Good luck!
If you’ve got a story about switching doctors, or on a related topic, please leave a comment. Everyone can learn, and become empowered, from similar stories.
Upcoming events at City of Asylum
“Examining Diagnosis & Identity with Rachel Aviv,” Tuesday, Sept. 26:
The event runs from 7-8:30pm EDT, live in Pittsburgh and virtually. You can sign up here: Rachel Aviv at CoA. Aviv’s book—Strangers to Ourselves—is fabulous and this should be an enlightening evening. I’ve copied in the promotional material below:
The Healthcare and Humanity Reading Series returns with best-selling author Rachel Aviv! Curated by bestselling author Theresa Brown, R.N. (Healing: When a Nurse Becomes a Patient) and presented in partnership with the University of Pittsburgh Center for Bioethics and Health Law, this series features authors whose work explores inequities in the US healthcare system. September’s program centers on Rachel’s book Strangers to Ourselves, which will celebrate the release of its paperback edition on September 19.
In Strangers to Ourselves, Rachel offers a groundbreaking exploration of mental illness and the mind, and illuminates the startling connections between diagnosis and identity. Drawing on deep, original reporting as well as unpublished journals and memoirs, Rachel writes about people who have come up against the limits of psychiatric explanations for who they are. She follows an Indian woman celebrated as a saint who lives in healing temples in Kerala; an incarcerated mother vying for her children’s forgiveness after recovering from psychosis; a man who devotes his life to seeking revenge upon his psychoanalysts; and an affluent young woman who, after a decade of defining herself through her diagnosis, decides to go off her meds because she doesn’t know who she is without them. Animated by a profound sense of empathy, Rachel’s gripping exploration is refracted through her own account of living in a hospital ward at the age of six. Challenging the way we understand and talk about illness, her account is a testament to the porousness and resilience of the mind.
Related Workshop: “Reshaping the Stories that Make Us”
Sept. 27, 7-8:30p EDT
I am so excited about this in-person workshop! You can sign up here: Reshaping the Stories that Make Us. The goal is for patients to take what is said about them in their medical records and in whatever way feels right to them, make it into more of their own story. Read more about the workshop below:
This workshop, inspired in part by Rachel Aviv’s book Strangers to Ourselves: Unsettled Minds and the Stories That Make Us, aims to curate a tactile and participatory exploration of individuals’ relationships to their medical archive. Co-created among the body, the medical care team, and the patient’s behavior, medical documents offer a specific, medicalized perspective on the patient’s experience that doesn’t always reflect the story that person would tell.
In pursuit of re-inserting the patient’s voice as an authority over their medical experience, this workshop, led by memoirist and medical professional Theresa Brown, R.N., will guide participants through a process of breaking down medical documents & rearranging the given words, thus allowing them to examine the interplay between a medicalized and a personal understanding of their bodymind’s experience. In transitioning sterile documentation to open artistic interpretation, participants in this workshop are able to transform “prescribed” material into something uniquely reflective of them.
Participants are encouraged to bring paperwork or documentation from their own medical/health-related experiences* (eg. the paperwork you get when you pick up a prescription, summary notes from a doctor visit, etc.), OR other meaningful documentation they feel connects to and/or describes their medical experience (dictionary definitions, DSM-5 requirements, articles, etc.) There will also be printed DSM descriptions of common mental health conditions (ex. generalized anxiety, OCD, depression) available for participants to work with.
*If participants are bringing their own documents, they should be photocopies or documents that participants are comfortable cutting apart.
Like much of the country, we have been having a heat wave. It’s supposed to lift by Thursday, but I admit to enjoying this last blast of summer.
Hugs to all!
Theresa
This was great, Theresa. It reminded me of something I read a long time ago: we spend more time researching what car to buy than which doctor to choose. Your article (and the comments below) reminded me that we need a more empowered mindset about switching providers as well. In the end, it's our health on the line.
My oncologist went on maternity leave after my 1st chemo treatment, then moved to Texas. The next doc assigned started my first appointment with a hug (me, already braless in a tiny pink smock), which I did not like. Then before leaving the exam room he wanted another hug and I refused. I went to the checkout desk and promptly switched doctors. The hugging doctor apologized and wrote his apology officially in my follow-up notes, which any future doctor can read. I'm sure there is a notation in my file, like on Seinfeld, that says "troublesome patient." To each his own - I'd prefer someone focused on the science, not on hugs.
PS: I finished reading (listening to) "Healing" this weekend and LOVED the story of the deer crossing through the water, and it just reminded me of how strong we women are. That deer knew the way through, and for generations women have known the way through hard times, often carrying along others on their back. Inspiring.