MedicalResearch.com Interview with:
President of the US Metastatic Breast Cancer Network
(Ms. Mertz has been living with metastatic breast cancer since 2003)
Medical Research: What do you mean by the term, “Long Term Responders”? How is this different than “Survivor”?
Shirley Mertz: For many years, especially in the month of October in the U.S., the media and breast cancer organizations have written stories and celebrated women who have received an early stage breast cancer diagnosis, gone through treatment and now see breast cancer in their “rear view mirror.” For these women (Stage I, II or III disease), treatment has an end and they can get on with their lives. In contrast, for patients diagnosed with Stage IV disease, also called metastatic breast cancer, treatment never ends and they will ultimately succumb to the disease. Long term responders are those metastatic breast cancer patients who have responded well to a treatment–experiencing perhaps a complete remission (not a cure) or stable disease. While that treatment may continue to keep their disease under control for 5 or more years, such patients must continue with treatment. Ultimately, their disease will progress and they will die of the disease. This can be immensely traumatic for the patient and the family if they were failed to be diagnosed by a doctor. If the cancer was found sooner then there would be a better chance of survival. If this has ever happened to you then you may want to contact a failure to diagnose attorney.
Medical Research: What are some of the misunderstandings about early and metastatic breast cancer held by extended family members, friends, work colleagues, and the public?
Shirley Mertz: When a metastatic breast cancer patient shares that their cancer has spread to their bone with family, friends or the public often, they think this means the patient has bone cancer. Metastatic breast cancer means that cancer cells have left the breast and traveled to other parts of the body–bones, liver, lung or brain. Also, the public or friends may think that a person received a metastatic diagnosis because the woman did not get a mammogram or “catch it early.” The majority of women living with metastatic breast cancer received their diagnosis 5, 10, 15 or even 20 years after successful treatment for early stage breast cancer. Scientists do not know why the disease returns as metastatic disease, and yet women are made to feel that a Stage IV diagnosis is their fault. Going through something like this can be very difficualt, not only for the patient, but for their loved ones too. At a time like this, it is important to get all the help you can get, in order to try and make everything a little easier and relieve some of the stress you are dealing with. You don’t have to go through this alone. This is why you should look into something like Hospice Cincinnati to get specialist care from nurses and doctors who have your best interests at heart. It is beneficial to do everything you can in order to make life after your diagnosis as comfortable as possible.
Finally, the public does not understand that treatment never ends for metastatic patients–a major difference from the experience of early stage patients.
Medical Research: Do some healthcare providers also have misperceptions about the psychological and social issues Long Term Responders face?
Shirley Mertz: Anxiety, depression, sleep disorders and access to social/emotional support are issues that start with a metastatic breast cancer diagnosis and continue even if the patient has responded well and long to a treatment. There is no cure currently for metastatic breast cancer and we know that the cancer can mutate and find ways to outsmart treatments. This reality sits squarely in the minds of patients who have to find daily strategies and tools to work through and beyond this reality. It is not easy.
Medical Research: What suggestions do you have for the medical community and Long Term Survivors in addressing the discussion surrounding the high costs of second and third line treatments for metastatic cancer?
Shirley Mertz: Metastatic patients look to their doctors to recommend the most appropriate treatment for their type of disease, the tumor’s molecular makeup and their individual health status. When a doctor chooses treatment because it is appropriate and not because it costs less, then there is trust between the patient and healthcare provider. A meaningful dialogue about the benefits of treatment and risks to the patient should take place. Costs of treatment should not be the center focus and the factor that determines treatment.
Patients, no matter if newly diagnosed or considering a second or third line treatment must do their homework about treatment options and ask their doctor “why are you recommending this?” Was their a better treatment for me that you excluded? Why?
The metastatic patient community must voice their objections to the never ending high cost of treatments to policy makers. To shut out those who do not have the means to pay the costs of a potential efficacious treatment means that the number of long term responders will decline and we will see a society where those who can pay on their own have the best health care, while the middle class and poor will lose their human right to good health care.
Abstract: LIVING ON BORROWED TIME: LONG TERM RESPONDERS
3rd Advanced Breast Cancer Conference (ABC3) in Lisbon
Shirley Mertz (2015). Living With Metastatic Breast Cancer: On Borrowed Time