Tag Archives: mammograms

When Did You Get Your First Mammogram? This is My Story…

You won't find this story in you October issue...

You won’t find this story in your October issue…but it will be online.

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?”

My story 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.

When did you get your first mammogram?

I got my first mammogram after the July 4th holiday weekend in 2009; I was 43 years old.

Why did you choose that particular time to get started? What did your doctor say, and did his/her advice sway you?

Things were clearly winding down at my publishing job.With my continued employment on shaky ground—as well as the attendant health benefits—I could no longer procrastinate about seeing my doctor.

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!

What was the experience like? Any surprises? Things you wish you would have done differently?

The test itself wasn’t painful.

The surprise was finding out that day I definitely had breast cancer. (“This is NOT a cyst,” the radiologist told me. “You have to see a surgeon.”)

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.

What would you say to other women around your age who are talking to their doctor about getting a mammogram for the first time?

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.

Know the limitations of mammography. Mammograms do not come with a money-back guarantee and unfortunately their effectiveness is often exaggerated or misunderstood.

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.

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Our Feel-Good War on Breast Cancer: Who Will Listen?

Patrick Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated Press; U.S. Postal Service, via Associated Press.

Peggy Orenstein’s NYT Magazine article,  “Our Feel-Good War on Breast Cancer,”  is generating a lot of commentary on Twitter and various message boards.I summarized the article and offered some commentary on the MBCN blog. But I still have a few more things to say.

As Orenstein’s article demonstrates, breast cancer is complex disease. Here are some quick thoughts about breast cancer and screening:

I’m grateful the New York Times provided Orenstein with a platform to tell her story. The article’s run length is both intimidating (about 6,500 words) and frankly amazing (with today’s anemic ad revenues most journalists are routinely expected to perform the print equivalent of inscribing The Lord’s Prayer on a grain of rice).

It bothers me, however, that many of the messages in Orenstein’s aren’t new. They have  just never attained the same level of discussion. Consider Musa Mayer’s 2011 NBCC presentation “Theories of Metastasis“:

Mayer wondered why very few advocates focus on MBC. She offered the following theories:

  • Avoidance: Vast majority of advocates are primary breast cancer survivors at risk of recurrence: “We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”
  • Expertise required: Lack of knowledge about complex MBC treatments and the different issues that women with MBC face
  • Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing
  • Screening and early detection still a primary focus
  • Naïvete and fatalism both play a role
Musa's Mayers "Theories on Metastasis: Innovative Thinking, An Advocacy Perspective" can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Musa’s Mayers “Theories on Metastasis: Innovative
Thinking, An Advocacy Perspective” can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Dr. Gilbert Welch’s 2012 NTY Op-Ed piece, “Cancer Survivor or Victim of Over Diagnosis”  also covers much of the same ground as Orenstein’s 2013 article, and, indeed, Welch is prominently featured in Orenstein’s article.

Welch’s article ran on November 21, 2012. Did you read it? Did you share it on Facebook and Twitter? I know I didn’t. Yet when Orenstein reiterates many of Welch’s points lo these five months later, suddenly this same information is more compelling.

One of Orenstein’s central tenets is that early detection is not a breast cancer cure. That’s been said before here, here and here and I’m sure countless other places. In my own writing, I have frequently cited The National Breast Cancer Coalition’s 31 Myth and Truths.  Here is an excerpt from NBCC’s Myth #2:

…evidence shows that in the United States, it has been estimated that a woman’s cumulative risk for a false-positive result after ten mammograms is almost 50 percent; the risk of undergoing an unnecessary biopsy is almost 20 percent. In addition, women who are screened with mammography often have more aggressive and unneeded treatments. It is estimated that mammography screening has increased the number of mastectomies by 20 percent and the number of mastectomies and lumpectomies combined by 30 percent.

Women are regularly told that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.

It’s also instructive to note what this 2009  NYT Op-Ed piece said:

Screening turns up lots of tiny abnormalities that are either not cancer or are slow-growing cancers that would never progress to the point of killing a woman and might not even become known to her…The scientific argument is that it is not worth taking such risks for the large number of women whose cancers grow too slowly to kill them. But it is difficult, in practice, to apply that kind of scientific analysis to the immediate questions confronting a woman and her doctor when a mammogram turns up an abnormality. The only real solution will come when researchers find a way to distinguish the dangerous, aggressive tumors that need to be excised from the more languorous ones that do not.

If you’ve read Orenstein’s current article, that last part will certainly sound familiar.

Orenstein’s 2013 article reminds us  that metastatic breast cancer research receives scant funding, noting that “only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis.”

That point previously was made in Roni Caryn Rabin’s 2011 NYT story: “A Pink Ribbon Race Years Long”:

Since it is metastasis that ultimately kills, some advocates want more resources devoted to its study and treatment. Even though many cancer drugs are initially tested on patients with advanced disease, Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process. “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget,” said Dr. Welch…

And Mayer, in her 2011 presentation says the same thing. She offers a pie chart from Science Daily, as well as this pull quote:

“Although there is considerable variation, the median spent on metastasis research is around 5% of total cancer research funding. Is this sufficient?” Jonathan Sleeman, Patricia S. Steeg, “Cancer metastasis as a therapeutic target,” European Journal of Cancer 46 ( 2010) 1177–1180 (free full text).

To paraphrase Yogi Berra, it’s deja vu all over again, isn’t it? Well, perhaps if we say it  loud enough and long enough people will start listening.

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Can’t See the Metastatic Forest for the Breast Cancer Screening Trees

Others can speak far more knowledgeably and eloquently about the recent pink ribbon funding controversy. My concern is that we are missing the forest for the trees. Setting aside the funding issue, let’s consider the truth worth of these exams. Screening and self exams can be helpful. But let’s not kid ourselves. These tests are frankly not that great.

“Women are regularly told that screening mammograms save lives,” says the National Breast Cancer Coalition. “Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.”*

Essentially, we have better imaging technologies. The  average size lump found by first mammogram is about the size of a dime (~1.5 cm) but even tumors as small as pencil erasers can be seen.

The real problem is we don’t know WHAT we are looking at.

We don’t know  WHY some tumors spread beyond the breast.

We don’t know HOW to stop metastatic growth.

We are seeing more and more breast cancers earlier and earlier. In some cases, people are overtreated: It’s the oncological equivalent of using a shotgun to kill an ant. Many women may be diagnosed and treated for a cancer growing so slowly it might never have caused any symptoms or threatened their lives.

As surgeon/scientist/blogger David Gorski, explains, “… for mammographically-detected small tumors, almost always those detected by screening mammography, it’s not so clear whether all of these need to be treated. Overdiagnosis is being increasingly appreciated as a significant problem, and, indeed, may account for as many as 1 in 3 breast cancers detected by screening mammography (although more common estimates are on the order of 20%). There is even evidence–not bulletproof by any means, but intriguing evidence–that as many as 20% of mammographically detected tumors may actually spontaneously regress.”

Screening is just one tool. We need to look at the bigger picture. Unfortunately, the under treated are always with us:

“If we did what we already know, at least 37% of cancer deaths in people between the ages of 27 and 64 could be avoided right now,” writes ACS’s Dr. Len Lichtenfeld. “Where is the national conversation about the fact that poverty is a carcinogen? Are you talking about it? Is the media talking about it? If the silence is deafening, then perhaps you have your answer. “

Finally, as much as I have a vested interest in breast cancer research, it shouldn’t come at the expense of addressing other diseases. I concur with ACS’s Dr. Otis Brawley:  “The wisest advocacy for cancer science is support for more money for cancer research in general and support for funding the best science and encouraging scientific investigators to maintain an open mind,” says Brawley.  “Scientists must look for additional applications of findings beyond just their cancer of interest.”

You’ve probably heard of the chemotherapy drug Herceptin, which is used to treat about 25% of breast cancer patients. It was developed to treat neuroblastomas and gliomas, both cancers of the nervous system, but it didn’t work for those cancers.
Another example, cisplatin, was first developed as a treatment for testicular cancer.  It is now the most commonly used chemotherapy in the treatment of lung cancer and ovarian cancer. It is also used in some breast cancer treatments. The drug oxalaplatin used in colon cancer therapy was developed from cisplatin.  So testicular cancer research benefited a number of other cancers.
Similarly, the drug leuprolide was developed in the mid-1980s as a hormonal treatment for metastatic prostate cancer. This drug has since been FDA-approved for not only treatment of metastatic prostate cancer, but also premenopausal breast cancer, endometriosis, and precocious puberty.

The number of drugs that were developed for one disease but ended up being useful in others  is legendary and goes beyond cancer.

*Women age 40 and older should have mammograms every 1 to 2 years. Women who are at higher than average risk of breast cancer should talk with their health care providers about whether to have mammograms before age 40 and how often to have them.

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