In its October 2014 issue, Better Homes & Gardens magazine will run a feature in which seven people responded to the question “When did you get your first mammogram?”
won’t be among them. will be online. [Kudos to the health editor for picking up the phone and calling me.]
The author, freelancer Camille Noe Pagan, told me my story was cut at the last minute due to space restrictions. Mammograms are generally not as effective as the average woman might suppose. And when it comes to breast cancer, there are 155,000 US people like me who are living with Stage IV breast cancer, the kind for which there is no cure.
This is not a story that fits in the well with the typical Breast Cancer Awareness Month uplifting narratives. (See Dr. Peter Bach’s excellent “Avoiding the Pink Warrior Trap” in New York magazine.)
My first mammogram was also my last mammogram. I am telling my story in the hopes it will educate people and inspire them to talk to their doctors about what would be most appropriate for them. Also, I want people to know about people like me—people who will always be in treatment for breast cancer and, in all likelihood, will ultimately succumb to the disease.
BH&G’s freelancer sent me the following questions and then boiled my written response down to 100 words, which hopefully will be online soon. But here are my original comments.
All was going well with my general physical. But then the nurse practitioner felt a hard spot on my breast. She gave me a prescription for a diagnostic mammogram. I wasn’t too concerned—I felt fine and was tempted to ignore the nurse practitioner’s advice.
She wasn’t an alarmist, but she did stress it was important to follow up and get the mammogram, so I did. A diagnostic mammogram is different from a routine screening mammogram. Anyone who is told to get a diagnostic mammogram should most definitely do so!
In preparation for a mastectomy, the surgeon ordered a round of imaging tests (PET/CT, MRI and bone scan). I then learned I had metastatic or Stage IV breast cancer. My breast cancer had already spread to my spine when it was found.
I will always be in treatment for breast cancer. To date, one treatment has failed; I had a slight progression. I moved on a second treatment and have done well on that for two years. I am fortunate—because of the characteristics of my breast cancer (ER/PR+ and HER2-, the most common type), I was able to start on the very lowest end of the toxic drug spectrum. Eventually I will have to have chemo (and again, I will always be in treatment) but hopefully that won’t be soon.
Had I to do things over, I would have been proactive about getting a mammogram at age 40—and possibly sooner if my doctor had recommended it. I have a family history—my mom died of metastatic breast cancer at age 53. I am also of Ashkenazi Jewish descent—people of eastern European Jewish heritage have a higher risk for breast and ovarian cancers.
Do not use the current mammogram controversy as excuse not to have one if you know there is a compelling reason for you to have this test. In my case, I had a higher than average risk for breast cancer.
Young people tend to have dense breast tissue which does not image well—it is like looking for grains of white rice in a blizzard. Not all breast cancer has a lump—lobular breast cancer grows in sheets, for example. And my mom’s cancer—inflammatory breast cancer, doesn’t have a lump either. The breast can be red or swollen or take on an orange-peel like texture.
Unfortunately early detection is not a breast cancer cure. In fact, most of the 155,000 U.S. people currently living with breast cancer were originally treated for early stage breast cancer—their cancer came back 5, 10, 15 and even 17 years later—even though they took excellent care of themselves and had regular mammograms. It is very unusual for someone to be like me– diagnosed with metastatic breast cancer from the very start—this only happens 10 percent of the time.
With all of this being said, it would be wrong to say that mammography doesn’t save lives. But as the American Cancer Society’s Otis Brawley says, we need to use it with caution, explain its limitations and realize that we need a better test.
Although the median age for breast cancer is 61, young people can and do get breast cancer. Most people know that not having children increases one risk—probably because of the unopposed flow of estrogen. Fewer people know, however, that a woman’s risk for breast cancer increases after giving birth—for about 10 years. We don’t know why this is the case—researchers theorize it has to do with hormonal spikes that happen during pregnancy.
Most women of childbearing age are below the recommended age for a mammogram. Therefore, they should pay close attention to their bodies—if they sense something is “off” they should it bring to their doctors’ attention. Women in their 20s, 30s and 40s can and do get breast cancer.
No one dies from early stage breast cancer—the lump in your breast will not kill you. When cancer spreads beyond the breast—to bone, liver, lung, brain or some combination therein, it can no longer be cured. Obviously, it is better to find breast cancer before it can spread. But there’s also the challenge of over treatment. We don’t know which cancers seen on a mammogram would go on to spread and which would never do anything. So everything that is seen on a mammogram must be treated.
As patient advocate Musa Mayer says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.”
My other message is to find a group that can help you deal with your specific diagnosis. Breastcancer.org, Inspire.com and Living Beyond Breast Cancer are examples of groups that offer online support—including discussion boards—that make it easy to connect with others in the same boat. The Metastatic Breast Cancer Network (www.mbcn.org) really helped me—I attended its annual conference shortly after my diagnosis—it was the first time I met other people living with incurable breast cancer—they inspired me. There are few resources for people with Stage IV breast cancer—people tend to be more familiar with early stage disease where you are in treatment for a fixed period of time. Very few people grasp that not everyone “beats” breast cancer.
I look forward to seeing Camille Noe Pagan’s October 2014 article on “My First Mammogram” in Better Homes & Gardens.
Better Homes & Gardens sells 7.6 million copies each month. I wish my story could have been in print. I’m glad it will be online. I hope people will read it and come away with a better understanding of a complex issue and will be better prepared to discuss what is most appropriate for them with their health professionals.