Patient perspectives: Shirley Mertz
Advanced breast cancer patient, Shirley Mertz, speaks with pharmaphorum about the changes she would like to see for the metastatic breast cancer patient community.
The median survival of advanced breast cancer is three years. Shirley Mertz has been an advanced breast cancer patient for ten years, as an outlier to the statistics she felt she wanted to give something back to the patient community.
She retired from her career in 2005, and has since devoted her life to speaking on behalf of those with metastatic disease, and contributing her voice and skills to bring about change for women and men who live with metastatic breast cancer.
She speaks here with pharmaphorum in the latest ‘Patient perspective’ interview on the changes she would like to see for this patient community and how she hopes she can make a difference for these patients.
RA: Shirley, thank you for agreeing to take part. Could you please start by describing your journey as a patient?
SM: My journey with breast cancer began in 1991, when I was 44 years of age. I was diagnosed with a very early stage of breast cancer. Although it was suggested that I could just have a lumpectomy I decided to have both my breast removed because I thought that would assure me of a cure. After my surgery I had regular check-ups, but 12 years later unfortunately I was diagnosed with metastatic or advanced breast cancer that started out in my spine. And because I was not initially given appropriate treatment for my type of metastatic disease, the cancer spread into my skeleton and liver. But the good news is that I did ultimately receive treatment that worked. I will be celebrating this August 10 years of survival living with metastatic disease.
RA: What feelings do patients experience as they go through this journey, and do you think that healthcare providers sufficiently meet and address the emotional needs of patients with advanced breast cancer?
SM: Metastatic breast cancer is very different than early stage, and the most significant aspect of it is that it’s incurable. When a doctor says to you there is no cure for your breast cancer, there is great fear, confusion, and anxiety. That is part of every metastatic breast cancer patient’s experience.
So when the doctor says “I can give you treatments that will lengthen your life and we’ll go as long as we can, but I cannot cure you” your first concern is can we find a treatment that will work? And then, assuming that gets accomplished in the short term, you have to wrap your head around all of these emotions. You have to live with nothing being certain. Quite frankly the anxiety and uncertainty are constant and this makes our experience very different from those with early stage disease..
The healthcare professional you see most often is your oncologist, who offers treatment and attends to your physical well-being. He or she is not necessarily trained to deal with the human emotions of the disease.
Also, you have a limited amount of time with your physicians when you see them, and so the time is normally spent talking about treatment and toxicities.
There needs to be much more attention paid by healthcare professionals to the emotional needs of metastatic patients as they go through this journey.
RA: As president of the Metastatic Breast Cancer Network can you tell me more about its aims?
SM: The Metastatic Breast Cancer Network was founded in 2004 by two women who realized that their presence in a support group for early stage breast cancer patients was not very welcome,. Because the other patients realised that these women had an incurable disease, their presence made the early stage patients uncomfortable. So these two women decided to start an organisation that would speak on behalf of the unmet needs of metastatic patients.
MBCN has about 3,000 members, some of whom come from outside the US. Our primary goals are to educate the public about metastatic breast cancer and educate patients about the disease through our website and an annual metastatic breast cancer conference. The recorded presentations are on our website for patients from anywhere in the world to hear. Experts talk about bone and soft tissue metastasis, how to treat various subtypes of metastatic disease, and how patients can get support.
Finally, our organisation speaks out about the need for focused research to find new treatments to extend the lives of those living with this disease.
RA: What advances in the understanding of breast cancer in recent years have you found to be the most promising?
SM: In the last 15 years or so one of the things that’s most promising is this discovery that metastatic breast cancer, like early stage breast cancer, is not one disease.
Scientists have discovered that there were different subtypes of the disease so instead of treating metastatic breast cancer patients with just one type of drug, scientists revealed that treatments needed to be tailored to the type of disease that the women had.
Most recently I’m very heartened by advances in genomic testing which may lead to real personalised treatments, where an individual patient’s genome can be analysed. Scientists and doctors can interpret what genes are turning on the cancer and what genes have been turned off that are not enabling the body to fight the cancer. That holds promise for truly personalised treatment, and I’m excited about that.
RA: How easy do you find it to find resources on advanced breast cancer?
SM: Finding credible information about your subtype of metastatic disease and the treatments available for it is extremely important. I believe that patients have better outcomes when they educate themselves and ask their doctor questions.
A great source for information and quality support can be found on the Count Us, Know Us, Join Us website, created by Novartis with input from patients. There, women can connect to a community site called Inspire, where patients reach out to others and share their experiences and concerns.
The Count Us, Know Us, Join Us website has wonderful information that discusses the disease and treatments, while also sharing numerous organisations that have information and support for patients. The site can be accessed globally
RA: Do you feel the available resources on breast cancer meet the needs of the patients with advanced breast cancer, and what more would you like to see being made available?
SM: Most people assume that there must be resources for breast cancer, because a lot of women get breast cancer and there is a lot of information out there.
But metastatic breast cancer is very different than early stage breast cancer. Most breast cancer sites until recently, did not even acknowledge metastatic disease. So it’s been a very challenging process to get websites to write about metastatic disease.
But as patients raised their voices, more organizations have responded. The Count Us, Know Us, Join Us website is excellent and patients need to be made aware of this information.
RA: Finally if you could say one thing to pharma what would it be?
SM: Please focus on finding treatments to contain the spread of metastatic disease in patients who currently have the disease. We may not be able to cure metastatic disease right now, but if a person’s metastatic disease doesn’t grow larger or spread to vital organs she still can survive many years and have a relatively good quality of life.
So my goals is to get researchers and pharmaceuticals focused on finding treatments to contain the spread of metastatic disease, so that the disease can be transformed to a chronic disease like diabetes, or HIV / AIDS
RA: Well thank you very much Shirley for your time and for your insights there.
SM: Thank you for your interest
About the interviewee:
Shirley Mertz is a breast cancer research advocate and activist. For years, Shirley has raised her voice on behalf of those living with metastatic breast cancer. She is the President of the Metastatic Breast Cancer Network, a national, patient-led organization that provides information, education and support to those living with the disease. In 2009, she organized and co-led an effort to successfully lobby the U.S. Congress to pass a resolution declaring October 13 as Metastatic Breast Cancer Awareness Day.
Shirley also is the Field Coordinator for the National Breast Cancer Coalition and a member of its Board of Directors. She is a consumer reviewer for the DOD Breast Cancer Research Program and Komen for the Cure grants.
Shirley chairs the Metastatic Breast Cancer Subcommittee of the Translational Breast Cancer Research Consortium. She is a co-founder of END Breast Cancer Illinois, a group dedicated to supporting the goals of NBCC’s Breast Cancer Deadline 2020. As a Komen Advocate in Science, Shirley is a member of Komen’s Metastasis Roundtable and the Advocate Scholar Program. Globally, Shirley serves on the International Advocate Planning Committee for the Second Advanced Breast Cancer Consensus Conference, which will be held in Portugal in November. She has been invited to speak at patient, advocate and scientific meetings throughout the United States.
In 2008, The American Cancer Society recognized Shirley Mertz for her distinguished service in cancer advocacy. In 2011, she was one of ten breast cancer advocates across the United States to be honored by the White House as a Champion of Change in Breast Cancer.
How can pharma be encouraged to focus on finding treatments to contain the spread of metastatic disease ?