When the War Isn’t Won
Battling Metastatic Breast Cancer
by Judy C. Kneece, RN, OCN
“I do not like the pink ribbon, and I refuse to wear pink because I am not one of them anymore. I failed their success test.”
That statement was spoken by a metastatic breast cancer survivor at a recurrent breast cancer focus group I conducted. To my surprise, this sentiment was shared by many women in the group. They no longer felt comfortable in their breast cancer support groups, and breast cancer awareness month just added an additional layer of unease. These were women with metastatic breast cancer.
Six to ten percent of people with breast cancer are initially diagnosed with metastatic disease. Furthermore, twenty to thirty percent of those who are initially diagnosed with early-stage disease will later develop recurrent or metastatic breast cancer. If you, or someone you love, is struggling with this diagnosis, you may find it hard to trust the process again. Finding hope the second time around may be more difficult. Whether you are just starting the breast cancer war or getting ready to go to battle again, this is an unplanned, unwanted, and unexpected journey, but it is not without hope. You are not alone. You are not forgotten.
What makes metastatic breast cancer survivors different?
If you’ve been diagnosed with metastatic breast cancer, you may wonder what’s different about you or your cancer. Why were you diagnosed with a late-stage disease even though you have regular mammograms? Why didn’t mammography screening work for you? Why didn’t your surgery, chemotherapy, or hormonal therapy work? These are normal questions to ask, but unfortunately, the answers are not so easy.
Some cancers evade mammography detection. Other types of breast cancer are harder to detect early. Furthermore, no treatment is foolproof. Surgery only removes cancer found in the breast. Chemotherapy kills cancer cells, but the dosage is limited because it also kills healthy cells that are necessary for life. Hormonal therapy controls but does not kill cancer cells. Therefore, cancer treatment may not eradicate every single cancer cell, which can allow the cancer to invade another site in the body. Renegade cells grow until they cause symptoms and are discovered by diagnostic scanning or biopsy. That is when they are labeled as a recurrence.
Obviously, no one wants to receive a diagnosis of metastatic breast cancer. But we are living in an era of unprecedented progress in metastatic breast cancer treatment.
Breast cancer recurrence can occur any number of years after initial diagnosis, even after treatment and regular follow-up visits with your doctor. It is almost medically impossible to predict who will experience a recurrence or when it will happen. While it’s natural to want answers to these questions, the best thing you can do is move forward with what you do know.
What is my diagnosis, and what can I do about it?
Understanding your diagnosis to the best extent possible can help give you a sense of clarity. Therefore, it’s important to communicate well with your physicians about your disease and treatment options. Much can be done to treat even advanced-stage breast cancer.
Here are a few questions you should ask your doctor:
- Where in my body has the cancer spread?
- What are my treatment options?
- What are the side effects of the recommended treatments?
- What impact will treatment have on my quality of life?
- Am I a candidate for a clinical trial for my type of cancer?
- Is there a nurse navigator to help answer my questions?
- Do you offer a support group for people with metastatic cancer?
- Is there anything I can do to enhance the success of my treatments?
Your physician will look at the following information to determine the best course of treatment for you:
- Your personal health history since your original diagnosis
- Physical exam findings and present health status, including other diseases
- Recent imaging or scan results (mammography, ultrasound, CT, MRI, PET scan, etc.)
- Results of your biopsy pathology report stating your estrogen, progesterone, and HER2 status
- Results of gene testing (genetic/hereditary testing, genomic testing, etc.)
- Previous chemotherapy treatments received (some chemotherapy drugs have lifetime dose limits)
- Previous radiation therapy (radiation has a lifetime dose limit to a site; previous breast radiation limits some reconstruction options, as well as additional radiation to a site)
- Site of metastasis and its potential to be immediately life threatening, necessitating immediate intervention
- Your personal goal for treatment (aggressive therapy or conservative therapy that focuses on supporting quality of life)
- Your clinical trial eligibility and desire to take part in a clinical trial
Obviously, no one wants to receive a diagnosis of metastatic breast cancer. But we are living in an era of unprecedented progress in metastatic breast cancer treatment. New drugs and new drug combinations are continually being released. New genomic tests can now study the biology of your cancer and provide your physician with individualized information to help select the most effective treatment for your cancer. Ask questions. Listen carefully. And stay informed and involved in your own care.
Where do I go from here?
This diagnosis can be mind numbing. You probably feel overwhelmed and devastated. However, a key part of surviving is living beyond the limits of your fear. Do not abandon yourself to hopelessness. In addition to learning about available treatments, you must also learn how to enhance your quality of life by confronting the emotional issues you are facing and by managing the side effects of your treatment.
Survivorship is not just being “cancer-free.” It is also learning to live with cancer.
Survivorship is not just being “cancer-free.” It is also learning to live with cancer. This means that you have to incorporate cancer into your life. You can’t just think of it as a sidebar or an adjunct. In addition to selecting the best medical treatment available, you must also make choices that maximize your physical and mental resources and help you maintain an optimal quality of life.
There is evidence that our ability to deal with a disease is influenced by psychological and social factors, in addition to medical treatment. So, your approach to fighting metastatic breast cancer needs to be a blending of both mind and medicine. The mind itself may not be able to triumph over the illness, but your mind can shape the quality of life you experience.
Find a support group for people with recurrent or metastatic cancer. Develop a nourishing network of supportive people, maybe including a mental health professional, with whom you can address your fears of treatment or death. Strengthen relationships with your family and friends. Improve communication with your healthcare team, and review and reorder your priorities.
Too often, we hand all the decisions of our lives to other people, people who don’t really know what we need. If nothing else, living with cancer gives you a good excuse to take charge of your life. You do not have to be victimized by the disease in your body. You can live life fully while battling metastatic disease.
A woman with metastatic breast cancer in one of my focus groups summed it up like this: “At my first breast cancer diagnosis, I planned my funeral; after my metastatic breast cancer diagnosis, I planned my life.”
A diagnosis of metastatic breast cancer sucks, but you don’t have to live as a victim. Take this bull by the horns and move from victim to victor. Stay calm. Stay hopeful. And go ahead and wear pink. You are living with breast cancer. You are a survivor.
Judy Kneece is the author of the Recurrent and Metastatic Breast Cancer Treatment Handbook, Sexuality After Cancer Treatment: The Guide to Restoring Your Sex Life, the Breast Cancer Survivorship Handbook, and several other books on breast cancer for both male and female survivors and their partners. Judy has worked in the breast cancer oncology field for 30 years and is the founder of Educare (educareinc.com), a dedicated breast health education company. To accurately determine the needs of metastatic breast cancer survivors, she conducted eight national focus groups, during which participants openly shared their emotional and educational needs, many of which had often been unaddressed. In her Recurrent and Metastatic Breast Cancer Treatment Handbook, Judy addresses these unique issues, empowering metastatic breast cancer survivors with the information they need to participate as informed partners with their healthcare teams.
This article was published in Coping® with Cancer magazine, May/June 2020.
