I thought I’d start my 1st post with an explanation of what metastatic (stage 4) breast cancer is, as many don’t really understand what it is — I certainly didn’t before my diagnosis.
Metastatic breast cancer, also classified as Stage 4 breast cancer, is cancer that has spread from one part of the body (called the primary site) to another part of the body.
Microscopic cancer cells (which initially cannot be detected on any scans or tests) have traveled from the primary site, in this case the breast, through the walls of nearby blood vessels or the lymph system.
If the cells travel through the lymph system, they may end up in nearby lymph nodes (small, bean-sized collections of immune cells) or they may spread to other organs. More often, cancer cells that break off from the main tumor travel through the bloodstream. Once in the blood, they can go to any part of the body. Many of these cells die, some may settle in new areas, begin to grow, and form new tumors, or lay dormant for years before starting to grow. This spread of cancer to a new part of the body is called metastasis. Breast cancer most often spreads to the bones, lungs, liver, or brain. This means the cancer in the bones is breast cancer in the bones (not bone cancer) — cancer in the lungs is breast cancer in the lungs (not lung cancer). If it’s contained within the bone someone can do very well — when it goes to other organs, patients may not do as well for long.
Breast cancer that stays in the breast does not kill you. If you know anyone that has died of breast cancer they have died of metastatic breast cancer.
There is currently no medical cure for stage 4 breast cancer. The goals of treatment are to slow down and control tumor growth, and prolong life while maintaining quality of life. Many factors determine life expectancy and everyone’s situation is unique. No one can tell you how long you will live. Metastatic breast cancer isn’t the same for everyone who has it. Even though the median life expectancy is around 2-3 years, and the five-year survival rate after diagnosis is 15-25 percent, some live much longer (16 years or longer). It is treated as a life long terminal disease, and treatment never ends. According to the National Breast Cancer Foundation (NBCF), your symptoms at stage 4 will depend on the degree to which the cancer has spread in your body. In the United States, it is estimated that 150,000-250,000 people are currently living with metastatic breast cancer. It is estimated that 40,730 people (40,290 women, 440 men) will die from breast cancer this year. Yet of all the money dedicated to breast cancer research, only 2% is earmarked specifically for metastatic research.
Unfortunately, even early detection of very small stage 1 breast cancer does not mean the cancer has not already metastasized. “All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve,” said Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston. “While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.” They are not “survivors” they are “lifers.”
Even if one has a double mastectomy, lumpectomy, chemo, radiation, adjuvant treatment, and completed all treatment for stage I, II, or III breast cancer, they have a 20-30% chance of having metastatic breast cancer show up months or years later, even 20 years later. In my case it showed up 19 years later after an early stage 1 diagnosis with no lymph node involvement. A cancer has to be quite large to show up on any scans or tests and by that time it could have metastasized without being detected. For example an early stage tumor of 1 cm in size already contains 1 billion cancer cells. Women are often falsely told that if they make it to 5 years after early detection that they are cancer free. It is impossible to know if someone is cancer free — the best that can be said responsibly is that there is no evidence of disease, known as NED.
Fortunately the treatment of metastatic breast cancer has evolved over the past 10 years, and will evolve even more in the next decade. It’s important to be educated and stay informed.
For more information on Metastatic Breast Cancer: