As some patients with metastatic breast cancer live beyond their expected survival, they must deal with an unprepared healthcare profession, prejudice, and threats to their treatment from cost-cutting measures, according to experts speaking here at the Advanced Breast Cancer Third International Consensus Conference (ABC3) 2015.
Patients living longer with metastatic cancer are "pushing the boundaries" of what science and clinicians can explain in terms of survival, said Karen Gelmon, MD, a medical oncologist at the University of British Columbia, in Vancouver, Canada.
Long-term survivors feel like a "new species," for which healthcare providers ― especially oncologists ― were not necessarily prepared, Dr Gelmon told Medscape Medical News.
"They're in a difficult situation," she said. "On the one hand, they know that they're metastatic, they know there's uncertainty, they know they're likely going to die of their disease," she said.
"On the other hand, they're living long enough to outstrip the normal survival and to have new health issues come up."
She continued: "It may be that oncologists should be doing more multidisciplinary care; we're not the best people to look after some of these people."
Dr Gelmon explained that long-term breast cancer survivors may need more services outside of the offerings in a typical oncology setting: mental health and psychosocial support and primary care for screening and other health issues.
Metastatic breast cancer advocates who spoke here at the conference called for urgent action to better address patient needs, to educate society, to reduce the prejudice experienced by patients, and to include patients in the debate over the affordability of second- and third-line treatments.
The presentations echoed previous claims by US-based Breast Cancer Action, as reported by Medscape Medical News, that metastatic cancer is being actively suppressed from a "sanitized" version of breast cancer presented by the "pink ribbon culture."
In a similar move, MET UP was formed earlier this year along the lines of the confrontational AIDS Coalition to Unleash Power to change the attitude and tone of the debates around metastatic breast cancer.
Pushing the Boundaries
Dr Gelmon pointed out that there is a lack of understanding over the long-term physical adverse effects of extended treatment periods, the psychological and spiritual impact of living with uncertainties over survival, and the financial consequences of long-term treatment and loss of income from continued unemployment.
There are also issues for family and friends in living with someone who may or may not be well over the longer term and in maintaining or redefining their role with the group. Short-term caregiver plans focused on palliative care may also have to shift to more long-term plans that recognize the noncurative nature of treatment.
Noting that there are similarities with what AIDS patients go though, Dr Gelmon said: "But it's different, and the problem is that many of them don't feel like they've got chronic disease. Chronic disease sounds like eczema, or something that’s not life-threatening."
She added: "These women have life-threatening disease, they know they still have life-threatening disease, but they are living with [it]."
Consequently, there are a number of steps that oncologists need to take to improve care for long-term survivors. "Number one, we need to be more aware of this," Dr Gelmon emphasized.
"Number two, we need to train other healthcare professionals in this. Number three, we need to balance when we put in palliative care vs when we put in supportive care."
She added: "When do we celebrate the success and how do we make sure we're listening to the other needs of these patients?
“For oncologists, we need to take a role in educating other healthcare professionals that these people are not average, and for the patient, we have to know how to share the care and not abandon them, because they're still our patients, but make sure that they're getting the proper care for all their other issues."
Dr Gelmon noted that for a lot of patients, oncologists need to make sure that they "balance talking about their spiritual needs and their economic needs.
"There's been some recent data on the fact that certain kinds of support groups might be better than other support groups; mindfulness and support groups that deal with life skills are important."
Dealing With Prejudice
CJ (Dian) Corneliussen-James, cofounder and president of METAvivor, Annapolis, Maryland, and former US Air Force officer, has been living with advanced breast cancer for 9 years.
She presented the results of an analysis of international surveys and conferences, online discussion boards, meetings with cancer organizations, panel discussions, and interactions with advanced cancer patients.
This indicated that, alongside the cancer-related challenges, patients go through damaging experiences such as learning of their metastases via text messages or their answerphone. Younger patients may be told they are too young to have breast cancer and so are diagnosed at stage IV.
Corneliussen-James said that support programs specific for advanced breast cancer patients are rare, with the majority focused on early-stage disease. There are few relevant support materials, and there are few experts available on support telephone lines.
She said that the media generally avoids the topic of advanced breast cancer or misrepresents the disease by focusing on those who are doing well.
There is also a dearth of statistics on advanced breast cancer, and yet doctors and cancer groups state that breast cancer can be avoided or survived by doing "everything right." The implication, Corneliussen-James said, is that advanced breast cancer is the "fault of the patient."
In a release, she said: "They convince themselves that the metastatic patients caused their disease and thus they are safe, it won't happen to them, and they turn their backs on our community.
"Some doctors view us as just another patient doomed to death, so they expend little effort. Some cancer organizations don't want us at their rallies and conferences because they find us a 'downer,' and they want to be positive."
She added: "What we are doing is taking those in need of the greatest support and isolating and haughtily dismissing them as being at fault for having the disease in the first place.
"This is prejudice, and this is what we are trying to change. Until we do, we are failing a whole community of patients worldwide, on a massive level."
Corneliussen-James discussed the nature of the prejudice with Medscape Medical News after her presentation. She said: "I think it's a prejudice against the topic of death.
"We're the reminder of death, that we get this disease, and it is fatal in 97 to 99% of cases. I think that's where the prejudice lies.
"People don't want to have anything to do with death, it's frightening to them, so I think what's happened is that it's avoidance of the subject. That's why when you talk to people or bring it up, the problem is that what you do in your daily life, your daily activities, etc, becomes really your topic of conversation when you're with people."
Corneliussen-James said that a similar problem happens when patients go to the doctor to be tested to see if their disease has metastasized, "because something's really wrong here."
She explained: "He really doesn't want to listen to you because he doesn't want to be dealing with another metastatic patient, and also because patients do get paranoid.
"There's this turn-off; they don't talk to you, they don't want to explain what metastasis is. They don't want to explain, yet again, to a patient: Well, there's nothing really I can do for you."
What Price Survival?
Shirley Mertz, president of the US Metastatic Breast Cancer Network, who has been living with metastatic breast cancer since 2003, said those she refers to as "long-term responders" have lived long enough to see second- and third-line treatments such as trastuzumab approved for human epidermal growth factor receptor 2–positive breast cancer.
She said that long-term responders are "acutely aware" that their metastatic cancer can progress "at any time," but they are able to have a relatively high quality of life, thanks to treatments associated with little toxicity.
However, they are also aware that there is an ongoing debate about whether drugs should continue to be provided. "Discussions have begun within the medical community and among policy makers about whether the high cost of cancer treatments in the second and third line make their future use sustainable by society," she said in a release.
"However, the voices of long-term responders with all types of metastatic cancer have been missing thus far in the discussion. This excludes any debate about the relative costs to society when the lives of patients who have responsibilities to others are cut short."
She added: "Some argue that in societies where the costs of cancer treatments can no longer be justified, expensive treatments should only be available to those who can afford them.
"If such policies are adopted, the number of patients whose long-term survival has been made possible by the dedication, intelligence, and talents of scientists, researchers, and clinicians will no doubt decline."
No significant financial relationships have been disclosed.
Advanced Breast Cancer Third International Consensus Conference: Abstracts INO2, IN05, and IN06. Presented November 5, 2015.