Even though October is National Breast Cancer Awareness month and everywhere you look, read, or listen, you see information about early detection and prevention, there’s one thing you won’t see . . . much information on Metastatic breast cancer.
Metastatic breast cancer is breast cancer that has advanced to stage 4. It means that the cancer has metastasized, or traveled, through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. When you look for statistics, most of what you find is pretty grim. Cancer.net estimates that 42,260 people, both men and women, will die from breast cancer this year alone. But another site, FredHutch.com estimated in 2016 that there were an estimated 155,000-plus women and men in the U.S.,currently living with metastatic breast cancer or METS.
Patients, for the most part, don’t present with METS upon first being diagnosed, it usually develops after the initial diagnosis. And, there is no cure. Treatment for METS can be brutal, patients are subjected to numerous rounds of ongoing chemotherapy and radiation and often submit their cases to various medical trials.
Not only is the treatment not the same intensity or length of time that is suggested for an initial diagnosis, the support and understanding from the general public and other survivors generally isn’t the same either.
One patient likened the lack of support and information available to be like “having another job,” when she recounts having to explain over and over again that the scans, pricks, blood tests, and treatments will never come to an end. And that “staying positive” and “just fighting hard” won’t help her win over this disease. In fact, a study by Pfizer oncology showed that 60 percent of the 2000 people who participated mistakenly thought that METS was curable if caught early enough. The study also showed that 50 percent of those surveyed mistakenly assumed that the breast cancer progressed due to fault on the patient’s side; they didn’t choose the right treatment or keep up with preventative measures.
Cured?
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This excerpt is from FredHutch.com:
The MBC Alliance, a consortium of 29 cancer organizations including the biggest names in breast cancer (think Avon, Komen, Susan Love), addressed this lack of understanding and support as well as what many patient advocates term the underfunding of MBC research in a recently published landmark report.
“The dominance of the ‘breast cancer survivor’ identity masks the reality that patients treated for early stage breast cancer can experience metastatic recurrence … [anywhere from]a few months [to]20 years or more after initial diagnosis,” the report states. “Public messaging about the ‘cure’ and survivorship is so pervasive that people diagnosed at stage 4 with MBC can be stigmatized by the perception that they’ve failed to take care of themselves or undergo annual screening.”
Survivors are lead to believe that once they hit the remission goal of 5 years, that’s it, they’re home free. Teri Pollastrocertainly felt that way. In 1999, she was diagnosed with early stage ductal carcinoma in situ (DCIS) and was told she was cured after her extensive treatments. Only to be given a stage 4 diagnosis in 2003, when she learned the cancer had metastasized to her liver.
Living with METS
But, even thought there is no cure for METS, you still have to live, until you die. Whether its from METS or some other disease, condition or situation. Ref. Source
Dorothy Devine, 70, lives in Peace Dale, Rhode Island. She was diagnosed with stage III inflammatory breast cancer in 2004 and metastatic breast cancer in 2014. Dorothy is a 2017 Hear My Voice Outreach Volunteer. She grew up going to a Unitarian Universalist church, but had not attended for half a lifetime: 35 years. In 2014, with metastatic disease that had spread extensively throughout her skeleton, she returned to the congregation. This is the second half of a sermon she gave on July 7, 2017, to an audience of about 60. It has been edited for clarity and to add detail. Ref. Source
The main thing to know about METS is that the people that have been diagnosed with it are not alone. There are societies, organizations, websites, and entire companies that are now dedicated to addressing the needs of METS patients.
Here is a list, along with helpful advice for living with METS.
- Susan G Komen: Living with metastatic breast cancer
- Living Beyond Breast Cancer: Methods of Self-care to Deal with Stress and Anxiety
- Young Survival: Living with metastatic breast cancer
- Cure: Life, Redefined: Living Well with metastatic breast cancer
Final Thoughts
“Remember that many people with MBC can live with the disease for years …”
… and possibly longer than statistics might lead one to believe. By the time they are published, survival statistics may be outdated due to the introduction of newer and more effective drugs. How long a particular MBC patient lives seems to be mostly dependent on how well their cancer responds to various treatments. Some people also believe that lifestyle may play a helpful role in survival. Many patients who were initially given only months to live by their doctors are still alive years later. – Bestbird
“There is hope. You are not a statistic.”
I am still in shock myself and shedding many tears. But there is hope. You are not a statistic. Statistics are made up of thousands of cases. You are a unique case of one. I get overwhelmed also, but then I read on the Breastcancer.org Community Discussion Boards how women with stage IV have gone on with their lives, enjoying their families, even travelling. It is not an immediate death sentence, although it can feel like it. – Amica
“Don’t give up.”
When I first got my diagnosis I was terrified to the point that the only place I felt safe was at home with my family.
The good news is that unlike when my mother passed away from cancer 35 years ago, this is not a death sentence. There are so many treatments available, my nurse practitioner said that breast cancer is treated more like a chronic illness now.
I understand and am very realistic that this disease may be the thing that will one day end my life, but I am not letting it take my life that easy. I am going to fight and enjoy the time that I have left with my family … The one thing that I can say is don’t give up. – holmes13
If you or someone you know or love is living with METS, please visit any of the above sites for information and strategies for living with METS. At Seva Life, we treat the whole person through.
