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The community speaks out! Your thoughts on the USPSTF breast screening guideline changes.

December 3, 2009

Newly-recommended changes for breast cancer screening by the United States Preventive Services Task Force (USPSTF) are getting a lot of attention and proving to be controversial. The task force:

  • Recommended against screening mammography for women ages 40–49.
  • Recommended screening mammography in women older than 50 be performed  biennially rather than annually.
  • Recommended against teaching or performing Breast Self Exam (BSE) at any age.

FORCE disagrees with these screening guideline changes and believes they will cost lives, lead to confusion, worsen already existing health care disparities, make it more difficult for women to weigh the benefits and risks of screening for themselves, and make it more difficult to get insurance reimbursement for screening.  We strongly encourage the government and health care community to ensure that all women have access to risk assessment expertise and tools that allow them to understand their personal risks make informed decisions about their care.

The USPSTF recommendations specifically apply to women of average risk, but these changes will also detrimentally affect members of the high-risk community we serve.

FORCE has published a statement on these guidelines which we are asking our community to read. If you agree with our statement you can also sign our petition and provide us with feedback on your personal experience and let your voice be heard.

Because of underutilization of genetics experts and risk-assessment tools, many people learn about their high-risk status only AFTER THEY ARE DIAGNOSED with breast cancer, detected either by mammogram or breast self-exam.  For this segment of our community, access to surveillance is critically important; these guideline changes will needlessly cost lives.

The following personal experiences from members of our community  reinforce our position. Many individuals indicated that their high-risk status was not identified until after a diagnosis.  Without access to breast screening their cancer would have likely been discovered at a more advanced stage and they may not have survived.

 “My breast cancer was found on a mammogram at age 33.  I only began having mammograms after finding a lump on breast self exam. There was no family history of breast cancer or anything to indicate that I was high risk until after my diagnosis.  Subsequently I learned that I had a BRCA2 mutation.”

“When I was in my 20s I was not considered high risk and was told to watch and wait to see what happened with a lump I was concerned with.  Thankfully it was nothing.  However, today I am considered high risk due to a [mutation in] BRCA1 and I am eligible for screening. I am the same person with the same genetic background but the recommended course of action varied with the label.  How many women in their 40s are there like me?”

 “I found my own lump at the age of 33 via breast self exam.  This quite literally saved my life.  I subsequently learned that I am BRCA1–but had no known family history of breast or ovarian cancer beyond a paternal grandmother who died before I was born.  Without having done this routine self exam, I would not have found the lump when I did.” 

“My 47-year-old sister was diagnosed by mammogram with breast cance;, tumors appearing in both breasts.  We have NO family history, therefore she was being screened based on recommendations that women in their 40s start mammograms.  We have since found out our family carries the BRCA2 mutation.”

“With no close family history of breast cancer, I was 41 and going through fertility treatment.  I had no idea that I might have a genetic mutation that would cause me to have breast cancer.  I decided to get a mammogram before being implanted with embryos.  It was that mammogram that found a 2.5cm tumor in my right breast.  Even the surgeon said that she wouldn’t have found it if it hadn’t been for the mammogram.  If I’d been forced to wait until I was 50 for this test, I would be dead now.”

“My aunt was diagnosed with breast cancer at age 42. Her sister was diagnosed in her 50’s. We now know we carry the BRCA 2 gene mutation, but we didn’t know when my aunts were diagnosed. How many high risk people, who don’t know they are high risk, will get cancer at a young age and have it go undetected because they didn’t have routine screenings if policies change?”

One task force concern was that women ages 40-49 who are routinely screened are more likely to undergo multiple biopsies which are usually negative. Yet many women, particularly those in the FORCE community, feel that the risk of missing a single breast cancer far outweighs the risk of potential additional biopsies. Here are some additional comments from our members:

“I am appalled at the suggestion that it is too stressful for women to deal with false-positives—I had a false positive and the “stress” was (1) better than finding out that it was not a false-positive and (2) worth the life of that one woman in 1900. We do not have to be protected from too much “stress” by this panel or anyone. What we need is to continue lowering the breast cancer death rate.”

“As high-risk women we know anxiety well and find a way to deal with it. Let US decide what anxiety we want to deal with. I’d rather have anxiety and be screened than live in ignorant (but possibly deadly) bliss.”

“Ever not been anxious over a mammo or a biopsy? But, I would rather be anxious about results than to trust that I won’t be one of the 1 out of 1900 women whose BC is missed by having no mammo[gram]. How many people here have died from anxiety? And how many have died from undetected breast cancer?”

“Years before I was diagnosed with breast cancer, I had a biopsy that was negative. The stress of the biopsy was nothing compared to the anxiety I felt after my diagnosis of breast cancer. For me, I would trade the stress of biopsies to assure that any cancer was caught early.  I am glad that I was able to make that decision for myself.”    

Your stories reinforce what we already know: mammography in young women does save lives. We must apply all the means we have to save as many lives as we can. Even the task force agrees that the research shows that mammograms save lives.  However, their conclusion is that the cost/benefit ratio doesn’t justify continued screenings for women ages 40-49 orannual screenings for women after age 50. Your stories tell the personal stories of women diagnosed young, and women diagnosed with aggressive cancers that would have progressed had these new guidelines been in practice. 

“My stage 2A breast cancer was caught on a routine SCREENING mammogram when I was 44.  I had no lump that I could feel, yet the tumor was 3.2 cm.  My OB/GYN did not feel the lump during a clinical breast exam 4 months prior to the mammogram. I do not have a BRCA gene mutation, and the genetic counselor said my risk of getting breast cancer was no higher than that of the general population.”

“I was diagnosed with high-grade DCIS by routine mammogram.  I am 47 years old and would fall out of the guidelines. I cannot imagine what would happen in those 3 years.  A mammogram is such a noninvasive relatively inexpensive test that can be a lifesaver.”

 “I was diagnosed with breast cancer found in my baseline mammogram.  I did not know that I carried the BRCA2 mutation that predisposes me to cancer.  Had these guidelines been the standard at that time, I doubt I would be a 10-year breast cancer survivor.  Scientific findings are one thing, but I am the 1 in 1900 who did have breast cancer found on a mammogram before the age of 50.  I shudder to think what might have happened to me if insurance plans were following guidelines such as the ones presented by the USPSTF.”

 “My breast cancer was caught by a mammogram at age 47; my sisters at age 40.  Because of mammography, our cancers were caught early.”

“My premenopausal breast cancer was caught early on a mammogram.  And although it was mostly DCIS, there was an invasive component to it and it was in my lymph nodes. Had my diagnosis been delayed even a year, it likely would have spread beyond lymph nodes.”

The task force concluded that the harms of breast self exam outweigh the benefits in women of any age.  Once again we disagree with their conclusion. Your stories have validated our concern with these guideline changes. We believe that breast self exam can help identify breast cancer and likely saves lives.

My breast cancer was stage 1 because I caught it via BSE at age 36. My gynecologist had performed a clinical breast exam just 6 weeks prior to my finding the lump, and found nothing. I am absolutely sure that BSE saved my life.”

 “I had a breast exam by a doctor in my annual exam, a few months before I found a 2.5 cm lump myself, undetected by the doctor. My self exam saved my life, I had a very aggressive and fast-growing cancer. Had I waited until my next annual exam for a doctor to check for lumps, I’m sure my cancer would have spread.”

“I was 52 when I discovered a lump doing a breast self exam.  I had a mammogram just 3 months before.  I know many women in their 40s who have been diagnosed with early -stage breast cancer. If not for self exams and mammograms, they might not be here today.”

“Self exam discovered aggressive BC between mammos at age 40.  Because I had been getting mammograms, I was aware and doing self exams.  Mammos and self exam saved my life.”

“I found my own lump at the age of 33 via breast self exam.  This quite literally saved my life.  I subsequently learned that I am BRCA1–but have no known family history of breast or ovarian cancer beyond a paternal grandmother who died before I was born.  Without having done this routine self exam, I would not have found the lump when I did.  Mammography subsequently showed the presence of an additional, deeper tumor in the same breast.  I am LUCKY to be alive today –and if I had not found the lump through self exam, I would not be here.”

I was 24 when I did a self exam and found a 3cm tumor of aggressive breast cancer. Breast self exams are EXTREMLY important for women of all ages.

The task force review of risk/cost/benefit for breast cancer screening highlights the need for better, more effective breast cancer screening, the importance of better utilization of risk-assessment tools currently available, and the need for more research on risk factors, screening, and outcomes. Considering current concerns about  health care costs, guideline reviews and changes like these mandate that we do a better job in assessing women’s risk for breast cancer to more effectively allocate resources. In an age where more personalized medicine is within our grasp, we should strive to replace sweeping one-size-fits-all recommendations with better risk assessment and appropriate screening recommendations based on risk.  For those found to be in average or lower-risk categories—until risk assessment is an exact science—each individual should have access to credible and balanced information and be allowed to weigh the benefits and risks and decide what makes sense for them.

4 Comments

  1. Laurie Alpers says:

    I am a 50+ year old survivor of breast cancer who had comparative mammograms to diagnose my disease at age 50. Just this week, I’ve been helping a 35 year old recently diagnosed with breast cancer who is thankful she found it as a result of a breast reduction because she would not have had a mammogram until age 50. What could have happened to her?? She will raise her children due to this EARLY diagnosis.

  2. Margie says:

    I am 49 and a high-risk woman preparing to have a bilateral masectomy in 8 days. Over the past 12 years my mammograms had always come back finding cyst in both breast so I had them drained many times. The diagnose was always the same “nothing to worry about just cyst.” My insurace refused to pay for the BRAC1 testing so it was an out of pocket expense for my family.
    Finally I was told I carry the familiar cancer gene and it was in my best interest to have both breast removed as soon as possible. As scared as I am I consider myself lucky to have this chance.

  3. Leslie Lopez says:

    My cancer (DCIS, Stage 0) was detected at age 40 in a routine mammogram. I was very lucky. My sister’s DCIS was detected at age 41 in a routine mammogram, but she detected her invasive tumor (2 cm) two weeks later through self-exam. It was not detected in the mammogram, or by any of the medical personnel who already knew through biopsy that she had cancer in that breast. We already knew we were high-risk because of family history, but testing did not reveal a BRCA 2 rearrangement till the new BART regime. Until our diagnoses, we had to insist on our rights to early mammograms…it is shocking that the task force would make this more difficult for women.

  4. Self breast exams are so critical for all women.

    Even though I had a bilateral mastectomy with reconstruction (BRCA1+ plus family history) I still do the self exams to make sure I stay on top of my health.

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