We thank Carol Miele for allowing METAvivor to post her excellent article (full text below) that appeared recently in the Huffington Post. This is a great article to send your family and friends so that they better understand our condition.
What are you thinking after reading this title? Does it bring about visions of people dying from the Ebola virus in Africa? Does it conjure up thoughts about deaths from AIDS? Perhaps on the battlefield, with high body counts on any given day, but will it be sustained every single day? With well-funded medical research, uber diagnostic abilities, and super drugs with unprecedented efficacy, you may be scratching your head and wondering what could be killing an average of 110 people a day?
If you thought it was any of the above, you'd be wrong on all counts. The big killer is metastatic breast cancer (MBC, Stage 4). Men die from it too, but only about 1 percent of deaths are attributed to men. No one dies from early stage breast cancer. It's fatal only after it has spread through the body and settled into an organ, usually the lungs, liver, brain or bone... generally in multiple bone sites. My bone mets is in my left scapula, sternum, thoracic and lumbar spine, sacrum, right rib cage, pelvis and the head of the right femur. That's eight locations... nice round number, odd lineup though!
Many women have this same scattered configuration. I once wrote that I could understand a cancer-carrying bolt of lightning entering my left shoulder, traveling down my spine, sternum and right rib cage, into the pelvis and sacrum, then out through the right hip! But understanding the colonization of cancer cells in these areas is a mystery. Ahhh, it seems everything about cancer is a mystery! Why it occurs, how it spreads, how to cure it, or stop the spread.... all still a dark and murky mystery. Cancer, is The Emperor of All Maladies, aptly named by Siddhartha Mukherjee, M.D., an oncologist and cancer researcher, in a book by the same name. (Simon and Schuster, 2010)
He recounts that cancer, documented for thousands of years, has survived epic battles throughout time. Centuries of discoveries, many setbacks, occasional victories, but many deaths... too many deaths. We don't have accurate data on deaths from MBC. We don't know how many are living with the disease, nor how many actually die from it. On death certificates, if pneumonia was a complication of the cancer, it's listed as the primary cause of death. Cancer is a contributing cause. So, is the cancer captured in mortality rates?
Confounding this, for those living with MBC, data is stored by stage at time of diagnosis. If your breast cancer progresses from Stage 1 to 4 at some point in time, you will still be counted as Stage 1 breast cancer in the database. I was diagnosed as MBC de novo, meaning from the beginning, so I'll always be a 4. Dense breast tissue clouded over my tumor, growing for years; and so... the mammograms were inaccurate and essentially worthless! Could this be why so many aren't diagnosed until it has spread?
When cancer advances and spreads through the body, it can be managed for a while with targeted drugs, chemotherapy, hormonal agents or radiation. You must stay on a treatment regimen for the duration of your life, if only to prolong it a few months or years. Treatment fails when cancer cells gradually morph into a form that's resistant to your medication. The cancer grows and spreads again. Alternate treatment may be tried, but eventually you run out of effective treatment. The cancer takes over and gets out of control. It destroys healthy tissue on such a wide scale that you're no longer able to sustain life.
Back to the 110 who die each day... at the Spring 2015 breast cancer conference of Living Beyond Breast Cancer, a MBC organization, the attendees wanted a visual for the high death count. At the time, there were 108 deaths per day known. They gathered 108 attendees, each one laid down on the floor of a corridor adjacent to the hotel lobby for a die-in. They lay there in repose for a period of time. This visual was very sobering and made a huge impact. Stating the mortality numbers is one thing, but quite another to all see those bodies lying side by side, to represent the people who will draw their last breath that day. Then it happens the next day, and the next day, and the day after that... I think you get the picture.
There have been 40,000+ deaths every year for several decades due to MBC. The numbers are not going down, despite what you may have read recently. In fact, the number of deaths for women in their 20s and 30s is increasing. I know of several who died this past month, leaving behind their young children and babies, along with their grief-stricken husbands and families. One woman was diagnosed while she was breast-feeding her infant. Chemotherapy was delayed until she could breast feed a little longer. On this end of this curve, a 14-year-old girl recently died in the United Kingdom from MBC. The horror of that suffering in unimaginable! I'm not trying to start a stampede or use scary tactics, but this is a real global tragedy!
If 110 people were dying every day from anything else, wouldn't there be panic, a rush to find a cure, pulling out all stops?!? I'm asking a fair question. You might be inclined to say, but we hear of breast cancer cures all the time! or early findings are 99 percent curable. Usually, there are pink ribbons nearby and celebrations with confetti and balloons. Fact: There is no 100 percent assurance of a cure! Despite the success of radiation, surgery and/or chemotherapy, it's been scientifically proven that 30 percent of people will go on to metastasize regardless of their clean bill of health after treatment.
One last thing I want to leave you with, those 110 deaths per day mean that nearly five people die every hour from advanced breast cancer. Is that something we should all accept and live with?
