The Shock of Diagnosis

In April of 1992 Lori was 29 years old, living the single life in Hoboken and working successfully in sales.  She had been dating a man named Bart for several months, and the relationship was going very well.

On a business trip to San Francisco, Lori felt a lump in her right breast while showering.  She had never done self-exams, but she felt the lump by chance in the upper outer
breast.  She remembers it being somewhere between the size of a pea and a grape.  She didn’t think much of it, as she was so young and had no family history of breast cancer.   Fortunately, she had a regular check-up with her gynecologist scheduled for soon after her return.  At the appointment, Lori mentioned the lump to her doctor as a casual “by the way….”  The gynecologist also felt the lump, and referred her to a breast surgeon, a well-known specialist in Manhattan.

The surgeon ordered a mammogram, which was read as negative.  She then performed a needle biopsy on the lump in the office; the pathology report came back negative for cancer, but the breast surgeon wanted a specific diagnosis, and outpatient surgery was scheduled to remove it.

When Lori woke from the anesthesia after her surgery, she vaguely recalls the surgeon telling her, “I don’t like the way this looks.”  The pathology results would be reported in a
few days, and she’d speak to her at the follow-up appointment.  Bart had been waiting at the hospital, and they went to the movies that night.  Lori tried to put out of her mind what the surgeon had said, and reminded herself that she had no family history.

Lori arrived alone at the follow-up appointment with the surgeon.  Her family was scattered in various parts of the country, Bart was working, and she really didn’t want to make a big deal out of nothing.  The surgeon dispassionately informed her that the lump was CANCER, invasive ductal carcinoma, and the margins of the biopsy were positive, meaning that there was more cancer still in her breast.  In addition, the lymph nodes under her arm would need to be removed to determine if the cancer had spread outside the breast.  Lori was shocked beyond words, and after hearing CANCER, she wasn’t able to focus through much of the rest of the conversation.  She called Bart, and he immediately came to meet her at the surgeon’s office.  In the cab ride home, Lori broke down for the first time.  How could this be happening?  She was thin, healthy, she exercised, ate well, no ridiculous partying, NO FAMILY HISTORY!  The whole situation felt completely surreal and impossible.

Deciding to Fight

Over the next several days, Lori decided to take action.  She read whatever she could get her hands on (this was pre-internet, remember), and sought advice from friends
and family who might have information that could help her.  Lori remembers that when she had the presence of mind to ask the surgeon about getting a second opinion, the surgeon seemed offended; this made Lori decide that she needed to find a different doctor, and she consulted with several breast surgeons at all of the large academic centers
in the city.  Every surgeon recommended that she undergo a mastectomy (removal of the breast) with immediate implant reconstruction, and a dissection (removal) of the lymph nodes under her arm.  They also thought that chemotherapy would be indicated as part of her treatment.

One of Lori’s biggest concerns at this point was whether she would be able to conceive children after all of the treatment ahead of her.  Most of the doctors answered
vaguely if at all, and none recommended consulting a fertility expert regarding egg retrieval prior to chemotherapy.  One surgeon bluntly said, “Having children?  Don’t even think about it.”  Wow.

The surgeon that Lori finally chose was an older man at Memorial- Sloan Kettering Cancer Center, who greeted her by saying, “I bet you’re wondering what a young girl like you is doing here.”  Besides having an excellent reputation, this surgeon felt compassion for her awful predicament.  He was the right one.

Treatment

Within four weeks of her diagnosis, the final surgery was performed.  The pathology results were heartening; there had been no spread to the lymph nodes!  The tumor was still Stage I!  Lori then underwent several months of chemotherapy.  She says that the chemoregimen was not the toxic form that most women receive today, and although she
was nauseous and fatigued, she never lost her hair.  She was very glad for that.

Bart asked her to marry him, and she planned her wedding through chemo!  Lori continued to work,and aside from her boss, she was unsure about sharing her problem with anyone else other than family and friends.   She was one of two women in the sales force of her company at that time, and appearing less than capable was not a welcome prospect to Lori.  As a young career woman, she was uncertain as to how to navigate the issue.  In retrospect, Lori wishes she had given herself more of a break, and allowed
herself some time off to heal more peacefully.

Life After Treatment

Lori and Bart were married in May, 1993.  Her breast surgeon at Sloan Kettering gave her some hope with regard to having children, and told her there was a chance
she could conceive, but he wanted her to wait for five years to watch for a recurrence of the cancer.  Lori and Bart followed instructions.

During that time, Lori looked for any information, support or resources available for young women (under 40) facing a breast cancer diagnosis, and the special issues pertaining to them.  She could find nothing!  And there were no internet forums or discussion boards at that time.  She discovered a group called SHARE (Self-help for women with Breast or Ovarian Cancer), based in New York, which provided support and guidance for women with breast cancer.  Lori became involved in this organization, and
she helped found a support group specifically for younger women, which held seminars on fertility and child-bearing after cancer.  She was asked to serve on the board of SHARE, and her profile in the breast cancer community grew exponentially.

Lori became the face of young women diagnosed with breast cancer on a national media platform, and has been interviewed on numerous occasions by major national print and television outlets.  Her portfolios of clippings from those days in the mid to late nineties are enormous and extremely impressive.  She was a woman with a mission:  to help other women out there walking the same terrifying path that she had walked.

At the 5-year mark when she was cancer-free, Lori and Bart took a fabulous vacation to Hawaii.  Against the odds, Lori got pregnant right away, and gave birth to a beautiful, healthy baby girl!  Their joy was boundless.  A few years later, Lori conceived again, and had a second beautiful and healthy girl.  Today, Lori and Bart’s daughters are 8 and 13, adorable and talented and so very precious.

It’s now years later (20 years since her diagnosis!) and Lori feels blessed by her good health and good fortune.  Many of the women she became close to at SHARE have died of their disease, which has caused Lori much grief and pain.  Lori is a breast cancer survivor, but she feels that this doesn’t define her anymore.  In fact, many of her newer acquaintances have no idea that she’d had breast cancer.  She told me, “When you are first diagnosed, you never think the day will come when you don’t think about breast cancer.  Now, it’s not my focus.”  She is vigilant about having her annual mammogram on her remaining breast, and her doctor sends her for supplemental high-risk screening with breast MRI.  Unbelievably, she often has to do battle with her insurance company to cover the test.

Advice

When I asked Lori what advice she had for women based upon her experience, she made the following points:

• If you feel a lump, act on it.  Most lumps will not be cancer, but if it is, you have a much better chance of surviving if it is diagnosed early.
• She disagrees with the recommendations made by the government task force on mammography in 2009 (USPSTF), which stated that women should wait until 50 to have their first mammogram, and then have it every other year.  “I think that’s ridiculous, crazy even.”  Even though her cancer was not seen on her mammogram, she knows that most cancers are found mammographically.
• She also thinks that the task force is wrong to recommend that physicians not perform clinical breast examinations on their patients.  If she went to a doctor who
  said they were following the task force recommendations and they didn’t perform a breast exam, she would insist.
• If a friend is diagnosed with breast cancer, and you want to help, here are a few suggestions:
  • Go with your friend to important appointments, take notes, and be her advocate.
  • Offer a listening ear to your friend whenever she needs to talk about what she’s going through.
  • Help her find and research relevant support groups and reliable websites.
  • Help her organize her medical bills and insurance documents into a workable system.  Lori said that aside from having cancer, the worst part of her
    experience was sorting through and dealing with the overwhelming paperwork.

I’m inspired by my friend, and I am so thankful that she found that lump as early as she did.  You are a gift to your family and your girlfriends, Lori!  Thank you so much for sharing your story.

I strongly disagree with this conclusion, and with the suggestion that screening for breast cancer does not save significant numbers of women each year.

• Computer models and statistical analysis can be bent to create almost any desired outcome; stating that this constitutes “proof” is misleading.  Common sense and our own experience, as well as numerous published studies using real patients, tell us that screening for breast cancer with mammography saves thousands of women each year.  The earlier the cancer is found, the smaller it is, which means that it is less likely to have spread, greatly improving the odds of survival.  Supplemental tests such as breast ultrasound and MRI, when used appropriately, can also help us find cancers at the earliest stage.

• Using the authors’ results, Parker-Pope estimates that in the U.S., somewhere between 4,000 and 18,000 women each year are saved by screening mammography.  Although these numbers are likely lower than what is true, this is still a significant number of women who avoid premature death because they had their mammogram.

• There are some breast cancers found through screening that might not progress to the point of being life-threatening in the woman’s lifetime.  The authors call this “overdiagnosis.”  Until science can reliably tell us which cancers will progress and which won’t, and which don’t need to be treated, we will continue to treat the cancers we diagnose.  How can they call this “overdiagnosis” and “overtreatment” when we don’t know which cancers will be the killers and which won’t?

• The analysis does not take into account the fact that finding breast cancer earlier through screening not only means a better chance of survival, but also means that treating the disease will be less time-consuming, less invasive, toxic, and painful, and less costly.  The woman can potentially choose breast-conserving surgery (lumpectomy instead of mastectomy), and is less likely to require chemotherapy, a miserable experience that affects the patient, her body, and her family for months if not years.   The woman’s job standing can be affected as well.  And for many women, taking a leave from work isn’t possible, as their job provides their health insurance coverage.  If you’ve ever been through chemo or witnessed someone going through it, you’d probably choose to avoid it if you possibly could.  In addition, if the cancer is found early, the woman won’t need to have all of the lymph nodes under her arm removed, and will avoid the potential complication of lymphedema (chronic arm swelling and pain).  She can also avoid radiation treatments to the chest wall and axilla (underarm).  Why are these issues not even mentioned in the Dartmouth analysis, or in Parker-Pope’s article?  These considerations are extremely important for all women, and need to have a place in any conversation about the value of screening.

I practice at Montclair Breast Center, where we believe in taking a proactive approach to screening for breast cancer, tailoring our recommendations to each woman and her individual history, risk status, breast density, and personal concerns.  As a result, our patients have significantly better outcomes than national averages.  Breast cancer is the leading cause of death for women age 35 to 50, and the second leading cause of cancer death among women all ages, claiming 40,000 lives per year in the U.S.  This is not a disease that we can be complacent about.  Early detection is still our best line of first defense.  Don’t let a “computer model” convince you otherwise.

Breast Cancer Awareness Month ends on Monday.  Of course awareness is important, but knowing what specific actions you can take to protect yourself against the disease is empowering.  Breast cancer can strike anyone, with or without risk factors.  However, there are several things you can do NOW to lessen the likelihood of advanced breast cancer happening to you.

1.  Lace up and take a walk!  According to the Women’s Health Initiative study, women who walked just 30 minutes per day at least 5 days a week (exercise pace, not a leisurely stroll) decreased their breast cancer risk by 20%.  I know how hard it is to fit exercise into a busy life, but then I think about what Rachel Ballard-Barbash from the National Cancer Institute says about that in this article by Liz Szabo:  “If you can’t make time for being physically active in your daily life, plan to make time for being sick.”  She’s got a point.

2.  Know your Body Mass Index, and make a weight loss plan to keep it under 25.  Calculate your BMI in less than a minute here.  According to the American Cancer Society, “Both increased body weight and weight gain during adulthood are linked with a higher risk of breast cancer after menopause.”  Some have placed this increased risk at 25%!  “If there was a medication that gave us the same improvement as weight loss, we would be all over it.” ~Dr. Oz.

3.  Learn how to do a breast self-exam, and set a date to do it every month.  The smaller a cancer is, the more likely you are to survive.  Go to Don’t Be Shy for
more info and links to instructional videos.

4.  Quit the smokes.  See everydayhealth:   “A recent review by a Canadian panel of experts showed that both active smoking and exposure to secondhand smoke increase breast cancer risk in premenopausal women. The panel cited evidence from studies suggesting that women who start smoking at a young age are 20 percent more likely to develop breast cancer, and smoking for many years increases risk by up to 30 percent.”

5.  Limit the cocktails.  One of my girlfriends said to me this week, “But I’m a mom, I need that glass of wine!”  Sip mindfully, ladies, and don’t shoot the messenger!  According to the American Cancer Society, the use of alcohol is clearly linked to an increased risk of developing breast cancer. The risk increases with the amount of alcohol consumed. Compared with non-drinkers, women who consume 1 alcoholic drink per day have a very small increase in risk. Those who have 2 to 5 drinks daily have about 1½ times the risk of women who drink no alcohol.

6.  Find out if you are at high risk.  Have a discussion about your breast cancer risk status with your doctor, as you might need to take action.  But keep in mind that 75-90% of women diagnosed with breast cancer are not high risk.  Learn more here.

7.  Schedule an appointment for a mammogram.  If you are over 40, you should definitely be having yearly mammograms.

Your doctor might want to send you for  a baseline mammo at 35, and I wouldn’t argue with that.  See why the USPSTF (government task force) recommendation to start having biannual mammograms at 50 is irresponsible here.

8.  Know your breast density.  If your breasts are dense, your mammogram won’t find up to half of cancers, and you should have a test in addition to a mammogram every year (breast ultrasound or MRI).  See www.AreYouDense.org.  Your density information should be in the official report from your mammogram, so ask your doctor.  If it’s not in the report, call the radiologist who read your films and ask them.  It might take some legwork, but you have a right to know this, and the information could save your life.

A movement is afoot to make disclosure of breast density information mandatory when a woman has a mammogram.  More about this in a future post!

Since they were given “normal” mammogram reports, they did not pursue second-level screening with breast ultrasound or MRI. However, adding one of these tests to their screening regimen would have increased sensitivity, and it’s very likely that their cancers would have been found at earlier stages. When both women were diagnosed, they were shocked that crucial information had been withheld from them for all of those years of “normal” mammograms.

Nancy and JoAnn have made a mission of making sure all women who undergo mammograms receive information about their breast density, so that if second-level screening could help them, they could choose to pursue it. Women with dense breasts are not being effectively screened when they have a mammogram alone, and they should be informed of this. Check out this video, and visit www.areyoudense.org for more information about their advocacy work.

The insurance clerk she spoke with after she was notified of the denial told her she didn’t need to have the MRI because she didn’t have a strong family history of breast cancer. But, she explained to the clerk, she’d had breast cancer herself– didn’t that count? The clerk told her that “a history of having had breast cancer yourself isn’t on our list of approved reasons for breast MRI. “ The patient was amazed. She then asked if her own mother and daughter would be approved for breast MRI since they both now had a family history of breast cancer (her!), and the clerk said yes, that would be on the list of approved reasons.

Our patient was furious. Who is at higher risk for breast cancer than someone whose body already had made one? There’s a lot of talk about “evidence-based medicine,” but how about using common sense as well? She decided to appeal the denial, and after many hours in phone-tree hell, and after emailing and writing to the insurance company over many weeks, with the assistance of her own doctor’s staff (they were paid for none of this time), she was ready to give up. She’d found a radiology practice within driving distance that performed breast MRI, read by fellowship-trained breast imaging doctors, and they would accept payment directly from her rather than from her insurer. It was expensive, but at this point she didn’t care. She was willing to forgo a few luxuries that year if it meant possibly finding an early cancer, and easing her fears of a recurrence.

As it turns out, her doctor had kindly persisted, and finally got through by phone to the doctor employed by the insurance company. Authorization was granted, and the insurance company would cover the cost of the test. Keep in mind that health insurance companies CANNOT be sued by patients for denying coverage of services (they are protected by law); but a doctor who orders a test for a patient, and the test doesn’t happen because the insurance company denies it, CAN be sued for delayed diagnosis. Insurance companies can effectively practice medicine without a license, and I’ve seen no indication that this will change with “healthcare reform.”

So, the patient had her MRI. In the MRI image below, there is a suspicious 2.5cm mass in the right breast, circled in yellow. Remember that the patient had cancer in the LEFT breast a few years back, treated with lumpectomy and radiation. Because of the radiation, her left breast does not “light up” much on the MRI. However, the right breast, which had not been radiated, has a great deal of tissue that “lights up.” This is the dense tissue that makes her mammogram so difficult to read, and which hides up to half of breast cancers, including this one. Even so, the MRI clearly demonstrates the tumor.

It was biopsied with a needle under ultrasound guidance, and the diagnosis was Ductal Carcinoma in Situ (stage 0 breast cancer, i.e. early detection). Take home lesson: pick your battles, and don’t give up.

Density is determined by a mammogram. It cannot be determined with physical exam. Dense breasts have more fibrous and glandular tissue (which appears white on the films and can hide cancers, which also appear white), while breasts that are NOT dense have more fatty tissue (which appears grey and is easy to see through on the mammogram).

This is a mammogram view from a woman with fatty breasts that are NOT dense. The radiologist can state with a high level of confidence that there is no cancer in this breast:

This patient has breasts that would be categorized as “scattered fibroglandular tissue”. As you can see, there is some dense white tissue on this film where cancers can potentially hide, but much of the breast is fatty and easy to see through:

Now we start getting into the dense breasts. This patient has “heterogeneously dense” breast tissue, which means that more than half of the tissue in her breast is dense. The ability for a mammogram to find cancer in this breast is compromised, and the patient should be sent for a breast ultrasound or MRI in addition to an annual mammogram:

Here are two patients with “extremely dense” breasts. More than 75% of their tissue is dense, severely limiting the ability of mammography to find an early cancer. Women with breasts that are this dense also have a 5x greater risk of developing breast cancer compared to women with fatty (non-dense) breasts. These women should definitely be having annual breast ultrasound or MRI in addition to their yearly mammogram:

Don’t be surprised if your doctor does not know much about breast density. As the issue gains traction, the medical community will become more informed over time. For now, it is up to you to find out if your breasts are dense so you can protect yourself from advanced cancer.

Your density information should be in the official report from your mammogram, so ask your doctor for a copy of this report. Do not rely on the form letter you receive from the mammography center; this will not include your density. If it’s not in the official report, call the radiologist who read your films and ask them. It might take some legwork, but you have a right to know this! If you have “heterogeneously dense” or “extremely dense” breasts, your doctor should send you for an additional screening test each year in addition to a mammogram. If you are at high risk for breast cancer, that test should be an MRI. If you are of average risk, you should be having an ultrasound and a mammogram every year. Don’t rely on a mammogram alone, which will only find half of cancers for you! Your life is too important.

For more information:

www.AreYouDense.org

www.AreYouDenseAdvocacy.org

Government Mammography Task Force vs. You

When a Mammogram Alone is Not Enough

A 39-year-old mom with no family history of breast cancer felt a lump in her right breast when she was doing a self-examination.  Her mammogram pictures show dense breast tissue.  A triangular-shaped sticker (you can see the triangle on the RMLO and RCC films) has been put on the lump.  At that site on the mammogram, there is an irregular mass best seen on the magnified view RMML (yellow arrow) that demonstrates “spiculated margins”-  a radiology term for badness.  The mass is partially obscured by the surrounding normal, dense, white breast tissue.  This makes it difficult to see on the routine RMLO and RCC views: 

A sonogram was performed, which shows the mass (yellow arrow) measuring approximately 1cm:

The mass was biopsied with a needle and cancer was confirmed.  A breast MRI was obtained prior to surgery, which also clearly shows the mass (yellow arrow), with no other suspicious findings in either breast:

This patient found her cancer when it was Stage I, with no spread to the lymph nodes under her arm or to any other organ in her body.  She was able to choose breast-conserving surgery (a lumpectomy=a lump of tissue was removed) rather than a mastectomy (where the whole breast is removed).  She then underwent radiation therapy, which made the breast red for awhile and made her a little tired, but without other side effects.  She did not require chemotherapy.  Her time away from her family was minimal, and she did not have to take a leave of absence from her job.  Her long-term prognosis is excellent.

This young woman is very glad that she remembered to do her self-exam that month.  If the cancer had been left to its own devices and given another year to grow and possibly spread (she wasn’t due for her baseline mammogram until the following year at age 40), this might have been a very different story.

Don’t be shy!  Know your breasts.  Really.

BSE is especially important if you are younger than 40, since you are not yet in the group of women having yearly screening mammograms.  Many young women with breast cancer find their own cancers; if it is smaller when you find it, you have a better chance of beating the disease.  Self-examination is also important if you are older than 40, and you are diligent about having your yearly mammogram.  This is because mammography does not find all cancers and it is especially limited if you have dense breasts (up to half of cancers in women with dense breasts will not be seen on the mammogram – What Breast Density Means to You).

As for timing, it’s best to perform a BSE once a month, ideally at the same time in your menstrual cycle each month if you are pre-menopausal (for example, the day after your period ends), as the breasts don’t always feel the same at different points in the cycle.  If you are post-menopausal, choosing a day each month, for instance the 1st of each month, might help you remember to do the exam regularly.

Many women self-examine in the shower, but that is a matter of personal preference.  A full BSE includes visual inspection in front of a mirror, and then feeling the breasts while standing up and lying down.  See useful instructional videos from HealthiNation here and from the Susan G. Komen foundation here. Your gynecologist can show you how to do a good self-exam as well.

If you ever detect something abnormal on your examination you need to see your doctor right away.  The doctor will decide if you should be sent to a radiology center for a diagnostic mammogram and a breast ultrasound (also called a sonogram), and if you should be referred to a breast surgeon.  You might need to have a needle biopsy, which is a minimally-invasive office procedure.  Very often (8 times out of 10), the lump that you feel turns out to be something benign (not cancer), such as a cyst or a common benign tumor called a fibroadenoma.  However, if it does turn out to be cancerous, the sooner you are diagnosed and treated the more likely you are to survive.

If you feel something abnormal in your breast, but your doctor doesn’t feel anything and tells you everything is fine without sending you for tests, you should consider getting a second opinion from another doctor.  There are too many stories of “delayed diagnosis of breast cancer”–  it is the most common reason for medical malpractice lawsuits in the U.S.  Many of these suits are frivolous and unfair, but there are sometimes real instances of delayed diagnosis.  Trust yourself if you think something might be wrong.  You know your body better than anyone.