‘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- Fail first, “takes time and I’m glad that’s recently been repealed.”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.
“Chronic” leaves the connotation that you will be cured, that you cannot die due to the severity, or should I say the minutiae, of the recurring disease. “Terminal” says the truth of MBC. Metastatic breast cancer IS NOT CURABLE. Metastatic Breast Cancer couldn’t have been PREVENTED BY A MAMMOGRAM. 2% of those diagnosed with Metastatic Breast Cancer do not die from it. HOWEVER 98% of those living with Metastatic Breast Cancer WILL DIE FROM MBC.
As another metavivor, please take your chronic and explain that to all of the friends I’ve lost. This is a terminal illness and I’m sorry for you that you can’t face it. Unless I get hit by a car, my breast cancer will kill me that is the medical definition of terminal. You keep trying to spread your crap in all of our groups. Get over it already.
Gina, you’re wrong. Anyone that is living with a disease that is going to eventually kill them is terminal. Try looking up the definition. Hopefully someday mbc will be a chronic condition but until organizations like Komen quit ignoring us (unlikley) those of us living with mbc as of this moment are terminal. It sucks but it’s the facts. I’m not trying to be disrespectful but please do some research.
Chronic is just as ambiguous and doesn’t relay or respect the fact that people with metastatic breast cancer have an average life expectancy of less than 3 years upon diagnosis. To call such a thing chronic is a dangerous misuse of the word, which equates mbc with other conditions that are never life-threatening and can have the effect of reducing research urgency and minimizing the realities of the disease.
It seems apparent, Regina struggles to incorporate using a dictionary, but have no fear I checked for you. A chronic illness is defined as an illness which is lifelong but not fatal. Metastatic Breast Cancer is fatal. A person diagnosed with Metastatic Breast Cancer will will progress until death with near absolute certainty, regardless of treatment that is deemed a terminal illness. When a person dies of a terminal disease it doesn’t matter how long it takes it’s that the disease takes the life. This concept is simple and straight forward.
I also compiled the statistics you need. The median lifespan of a Metastatic Breast Cancer Patient is 36 months. 78% will be dead at the 5 year mark. That’s the information you didn’t take a moment of your time to research before you responded here.
I respectfully disagree with Regina. Quoted from an online search; “Terminal illness or end-stage disease is an incurable disease that cannot be adequately treated and is reasonably expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity.[1] An illness which is lifelong but not fatal is a chronic condition.”
This article is also insightful, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4969287/
Despite how desperately one may wish metastatic breast cancer is chronic, it simply is not. I have metastatic breast cancer and as of today, my disease will continue to progress until my death. While I am not dying today, I am terminal along with all the others with metastatic breast cancer.
I am a Metavivor and I completely disagree with the term chronic for a terminal disease. When the actual survival statistics change – which they have not in 40 years – then, you can talk to me about Stage 4 MBC as closer to chronic. A lot of denial going on in the above post! How about trying to get medicare or disability with your “chronic “ disease! Good luck!
Excellent points Kelli Davis!
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.
Chronic indicates we will live with it and die from other causes. Terminal means we will die FROM it. As long as the median survival is less than 5 years (and it is), this is not open for debate.
Regina, I am also a metastatic breast cancer “thriver.” This is most definitely a dire situation for me and for my family to deal with. I will lose my life to this disease. Yes, the timeline is unclear and other terminology might be more fitting but chronic does not describe the situation I am in. I already suffer from some true chronic diseases and they are not comparable. I hope that a miracle discovery is found to prevent breast cancer cells from migrating to secondary sites. That is what would make this a chronic disease. Breast cancer that stays in the breast could be a condition that is treated and not be life threatening. We cannot stop advocating for our health and to insist that the medical community direct research to metastatic disease.