‘Don’t call my disease chronic.’
By Peggy Peck, Editor-in-Chief, BreakingMED
CHICAGO — Kelli Davis had a room full of oncologists in front of her and she had a lot to say, beginning with an admonition: “Don’t call my disease chronic. That disrespects me and my disease, call it what it is: terminal. Don’t tell me that my metastatic breast cancer is now a chronic condition. Recognize that I’m living with a terminal disease.”
Davis was the lead-off speaker at an American Society of Clinical Oncology special educational session titled, “Current Controversies in Metastatic Breast Cancer.”
She identifies as a metavivor — a patient who has been living for several years with metastatic breast cancer — and she pulled no punches as she shared her views.
For example, one controversy is the tension between early stage breast cancer patients and metastatic breast cancer patients, a tension that she said is caused by the perception that “metastatic breast cancer patients did something wrong … didn’t notice something, didn’t get to the tumor early enough.”
Davis said that she and other “members of my community [of metavivors]” are also pushing back against clinical orthodoxy concerning whole body scans, including the use of PET and MRI, saying that scans should be done as a first step even in the case of early-stage breast cancer. “The search for micro-metastases should occur prior to staging,” she said.
And metastatic breast cancer patients need ongoing, serial scans, not just when symptoms arise. “I know women who regularly feign headaches to get their brains scanned, but why should they have to do that?”
She slammed resistance to baseline genomic profiling — the search for germline and somatic mutations— saying that both clinicians and payers put up barriers, but patients suffer when information that can inform treatment choice is delayed.
And when “new disease is found, biopsy the new lesions … maybe it’s not the same tumor … maybe it won’t respond to the same treatment,” she added.
Davis applauded efforts to expand access to clinical trials but was critical of exclusionary clinical trial criteria — a sentiment that was echoed throughout the meeting by both clinicians and researchers.
Ticking off a list of shibboleths that need to be deleted from current practice, Davis pointed to:
- Fail first, “takes time and I’m glad that’s recently been repealed.”
- Avoiding aggressive treatment based on parenting or partner concerns.
- Assuming that patients are reluctant to have a frank discussion about hospice.
Davis said there is a great need for oncologists to recognize the mental health burdens that come with a diagnosis of metastatic breast cancer.
The diagnosis forces the patient to “confront mortality, and that is difficult.” Depression, insomnia, and anxiety are all common in the metavivor community and these are issues for which they often have little support. She urged the oncologists in the audience to “talk to partners about going to therapy with patients. If the oncologist tells a partner to go to therapy with the patient, the partner is likely to listen,” she said.
She offered her own dramatic example of the mental health burden of metastatic disease: “Four years ago I was institutionalized. I just lay in bed. I couldn’t eat. I couldn’t speak. I was facing mortality, toxic effects of treatment, and financial toxicity from the cost of treatment.”
Finally, she said that she and other metavivors are “ready to be partners” in treatment and research, but urged oncologists to recognize that she and others suffer from “pink ribbon fatigue … we are always being asked how we are doing, how we are feeling … always being asked.”
Disclosure:
Davis had no disclosure.
Source:
Davis K “Opportunities and barriers to high-quality care in metastatic breast cancer from a patient perspective” ASCO 2019; Current Controversies in Metastatic Breast Cancer, Education Session, June 4, 2019.
BreakingMED, is a service of @Point of Care, LLC, which provides daily medical news reports curated to serve the unique needs of busy physicians and other healthcare professionals.
While I respect the perspective of Ms. Kelly, as a fellow metavivor, I strongly disagree with her statement about calling metastatic breast cancer terminal instead of chronic. The word “terminal” has no standard definition in medicine. It’s vague: are terminal patients dying now? or in six months? or within a year? or at some unspecified time in the future? If the latter is the case, then who isn’t terminal? The use of the word “terminal” carries with it unnecessarily dire connotations that are of no use to those of us who are already facing the uncertainty with which this diagnosis is fraught. “Chronic” on the other hand, does have a specific time course in medicine; any condition that lasts more than 3 months is chronic. So if we will have this for the rest of our lives, call it that. If our lives are to be foreshortened by metastatic cancer, then give us real data about our statistical likelihood of survival, and keep your ambiguous terms out of it.