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Coverage of Breast Cancer Screening and Prevention Services

This was originally published by The Kaiser Family Foundation on September 26, 2019 here.


Among women in the United States, breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer death. In 2016, an estimated 3.5 million women in the U.S. were living with breast cancer. The Affordable Care Act (ACA) and many state laws have provisions that assure that most women with private insurance, Medicaid, and Medicare have coverage for breast cancer screening services. This typically includes screening mammography for the general population of women, but also can include genetic testing and preventive medications for high-risk women over the age of 35. This factsheet discusses breast cancer screening and prevention services, and reviews the scope of private and public insurance coverage, as well as access to those services for women in the US.

Breast Cancer in the United States

Breast cancer is the most commonly diagnosed cancer among women in the U.S. and makes up 15% of all new cancer diagnoses. Approximately 1 in 8 women (12.8%) will be diagnosed with breast cancer during their lifetime.

  • In 2019 there will be an estimated 268,600 new cases of female breast cancer and 41,760 deaths attributable to breast cancer.
  • Breast cancer is most commonly diagnosed among middle-aged and older women, with 70% of new cases diagnosed among women 55 and older (Figure 1).

Figure 1: Seven in Ten Cases of Breast Cancer are Diagnosed Among Women 55 and Older

  • Most breast cancers are diagnosed at an early stage. Sixty-two percent of breast cancers diagnosed are localized, meaning they are found only in the part of the body they started, while 6% of cases diagnosed have metastasized, meaning the cancer has spread to other regions of the body.
  • Risk factors for breast cancer include but are not limited to: a family history of breast cancer, genetic predispositions, personal history with breast cancer, breast density, obesity, drinking alcohol, early menstruation, delayed childbearing and having fewer children.
  • In the U.S., while white women have the highest incidence of breast cancer, black women have higher breast cancer mortality rates (Figure 2). These disparities are likely attributable to a combination of factors, such as differences in stage at diagnoses, tumor biology, and genetics, as well as disparities in access to screening, follow up care and treatment.

Figure 2: White Women Have the Highest Incidence of Breast Cancer, but Mortality Rates are Higher Among Black Women

  • Although very rare, men can develop breast cancer. In 2019, there will be approximately 2,670 cases of male breast cancer diagnosed and 500 deaths.

Coverage for Breast Cancer Screening and Prevention

While several health organizations issue guidelines for breast cancer screening and prevention, private insurance coverage of preventive services under the ACA is governed by recommendations from the United States Preventive Services Task Force (USPSTF) and the Health Resources and Services Administration (HRSA). Under these guidelines, private group and individual insurance plans and state Medicaid expansion programs must cover the following breast cancer screening and prevention services at no cost to the consumer: 1) screening mammography at least every 2 years and as frequently as once a year for women ages 40 to 74 with average-risk for breast cancer; 2) genetic counseling and testing for mutation of the BRCA1 and BRCA2 genes in some women with a personal or family history of breast, ovarian, fallopian tube, or peritoneal cancer; 3) preventive medication for some women with elevated risk of breast cancer and at low risk for adverse medication effects (Table 1). Some medical professionals recommend other services, such as screening MRIs for women at higher risk for breast cancer, but these services are not currently subject to the ACA’s preventive services coverage requirement.

Table 1:  Breast Cancer Preventive Services Covered Without Cost-Sharing
Preventive ServiceTarget PopulationRecommendation
Breast Cancer Screening
(HRSA & USPSTF)
Women ages 40 to 74 with average-risk for breast cancer (HRSA)Women age 50-74 (USPSTF)Screening mammography at least every 2 years and as frequently as once a yearScreening mammography every 2 years
BRCA- Related Cancer: Risk Assessment, Genetic Counseling and Genetic Testing (USPSTF)Women with a personal history or family history of breast, ovarian, tubal, or peritoneal cancer or ancestry associated with BRCA 1 and/or 2 gene mutationPrimary care clinicians should assess women with a personal or family history of breast, ovarian, tubal, or peritoneal cancer or who have an ancestry associated with breast cancer susceptibility 1 and 2 (BRCA1/2) gene mutations with an appropriate brief familial risk assessment tool. Women with a positive result on the risk assessment tool should receive genetic counseling and, if indicated after counseling, genetic testing.
Breast Cancer: Medications for Risk Reduction (USPSTF)Women age 35+ at increased risk for breast cancerClinicians should offer to prescribe risk reducing medications, such as tamoxifen, raloxifene, or aromatase inhibitors, to women who are at increased risk for breast cancer and at low risk for adverse medication effect

NOTE: Women with family members with breast, ovarian, tubal, or peritoneal cancer should be screened with one of several screening tools designed to identify a family history that may be associated with an increased risk of breast cancer.
SOURCE: Kaiser Family Foundation. Preventive Services Tracker. As of September 2019.

Mammography

  • Mammography is a low-dose x-ray procedure that provide images of the internal structures of the breast and is the most common screening test for breast cancer.
  • Current HRSA guidelines, which define no-cost coverage standards for private insurance, recommend biennial screening mammography to start no earlier than age 40 and no later than age 50 for average-risk women and continue through at least age 74, while the USPSTF breast cancer screening guidelines recommend biennial screening mammography for women aged 50 to 74, and states that starting mammography screening before age 50 should be an individual decision based on preference and patient values. The USPSTF also concludes that there is insufficient evidence to assess the benefits and harms of screening mammography for women 75 years and older.
  • In 2015, 58% of women ages 40-49 and 72% of women ages 50-74 reported having had a mammogram in the past two years (Figure 3). Overall, between 2000 and 2015, mammography rates stayed relatively stable. Black women (70%) and women with some college education and more (71%) have the highest mammography rates (Appendix Table 1).

Figure 3: Mammography Use in the United States by Age Group and Insurance Coverage

  • Mammography rates vary by state. Ohio and Kansas reported the highest mammography rates (81%) in the nation, while Connecticut reported the lowest rates at 61% (Figure 4 & Appendix Table 2).

Figure 4: Mammography Rates Vary Across States

  • Research shows that women with insurance coverage are more likely to report having had a mammogram in the past two years. In 2015, only 30% of uninsured women ages 40 to 64 reported having had a mammogram in the past two years compared to 72% of privately insured women and 58% of women with Medicaid coverage (Figure 3).
  • Most professional guidelines suggest starting mammography after age 40, but 47% of women believe women without a family history of breast cancer should begin mammography screening before age 40 (Figure 5).

Figure 5: Almost Half of Women Think Women Without Family History of Breast Cancer Should Begin Mammography Screening Before Age 40

Genetic Testing and Screening for BRCA1/BRCA2 Mutations

  • Mutations to BRCA1 and BRCA2, tumor suppressor genes, increase the risk of female breast and ovarian cancers, as well as Fallopian tube, peritoneum, pancreatic, and skin cancers. While almost 13% of women in the general population will develop breast cancer at some point in their lives, 72% of women who have inherited the BRCA1 mutation and 69% of women who have inherited the BRCA2 mutation will develop breast cancer by the age of 80.
  • Factors associated with an increased likelihood of having a harmful BRCA1 or BRCA2 mutation include: breast cancer diagnoses before age 50, cancer in both breasts, both breast and ovarian cancers in the same individual, multiple cases of breast cancers, two or more BRCA1 or BRCA2 related cancer deaths in the family, cases of male breast cancer, and being of Ashkenazi Jewish descent.
  • Currently, the USPSTF recommends that primary care providers screen women with a personal or family history of breast, ovarian, tubal, or peritoneal cancers or have an ancestry associated with BRCA 1/ 2 gene mutations with one of several screening tools for an increased risk in BRCA genetic mutations. The USPSTF recommends that women with positive screenings receive genetic counseling and if necessary BRCA genetic testing.

Preventive Medication

  • The use of medications to help reduce the risk of or delay the onset of cancer is called chemoprevention. The drugs tamoxifen, raloxifene, and aromatase inhibitors reduce primary breast cancer risk in postmenopausal women.
  • The USPSTF recommends that clinicians should discuss and offer to prescribe these risk-reducing medications to some women 35 and older who are at an increased risk for breast cancer and at low-risk for adverse medication effects. Women who are not at an increased risk for breast cancer should not take these medications.

Coverage and Utilization of Services

Most women with public and private insurance have coverage for breast cancer screening services, but the scope of coverage can differ based on the type of insurance plan, how they qualify for Medicaid, and in the case of Medicare, where they live. While there are programs to assist uninsured and underserved women, these programs only reach a fraction of eligible women.

  • Private Individual and Group Insurance Plans—The ACA requires most private group and individual insurance plans, including most employer plans, to cover all services rated by the USPSTF with an “A” or “B” without consumer cost-sharing, as well as preventive services for women recommended by HRSA. Plans must cover the full cost of mammograms starting at age 40, genetic screening for high-risk women, and breast cancer preventive medication for high risk women under this policy.
  • Medicaid— Women who qualify for Medicaid based on their state’s decision to expand Medicaid under the ACA are entitled to the same screening and preventive services as women who are covered by private insurance. For women who qualify based on other traditional eligibility pathways, breast cancer screening and preventive services are considered “optional” under traditional Medicaid programs and the scope of coverage is determined by the state. A 2015 state survey of Medicaid programs, however, found that most states cover breast cancer screening and prevention services under expansion and traditional eligibility pathways.
  • Medicare—Medicare Part B covers annual screening mammograms at no-cost for women 40 and over. Coverage for BRCA genetic testing is not required nationally, but may be covered in some regions based on local coverage determinations. Women enrolled in a Medicare Part D drug plan who are at high risk for breast cancer may have coverage for chemoprevention drugs, but there is no requirement for Part D plans to cover these drugs without cost sharing.
  • TRICARE—TRICARE, the public program for military personnel and dependents, covers screening mammography for women 40 and older, BRCA genetic counseling, and chemoprevention, but is not required to offer coverage without cost-sharing. Out-of-pocket costs for consumers vary by an individual’s specific level of TRICARE coverage and active duty status.
  • The National Breast and Cervical Cancer Early Detection Program (NBCCEDP)—The NBCCEDP helps low-income, uninsured, and underinsured women gain access to breast and cervical cancer screening, diagnostic services, and referrals to treatment. Uninsured and underinsured women are eligible for the program if they are at or below 250% Federal Poverty Level (FPL) and are between the ages of 40 to 64 for breast cancer screenings. Although about 10% of U.S. women are eligible for the NBCCEDP breast cancer screenings, the program only serves about 11% of those who are eligible. In 2017 almost 192,000 women received NBCCEDP funded mammograms.
  • The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA)—Passed in 2000, the BCCPTA gives states the option to extend Medicaid coverage to uninsured women under 65 who are diagnosed with breast or cervical cancer through NBCCEDP screening programs. Although all states adopted this option, states have different eligibility requirements. In 20 states and DC, women are only eligible for Medicaid coverage if their screening and diagnosis was paid for by NBCEEDP funds; in 14 states women are eligible for Medicaid if their provider receives NBCEEDP funds or the services provided fell within the scope of the NBCEEDP grant; and in 16 states women are eligible for Medicaid coverage for treatment regardless of where they were screened as long as they meet the other eligibility criteria. In 2013, almost 57,000 uninsured women with a breast cancer diagnosis gained Medicaid coverage through the BCCPTA.
  • While many women now receive no-cost coverage for mammography services, women who get diagnostic mammograms, those who get preventive services out-of-network or who are in grand-fathered plans may be subject to co-payments, cost-sharing or deductibles. In the 2017 Kaiser Women’s Health Survey, 16% of women with private insurance reported paying out-of-pocket costs for a mammogram, compared to 3% of women with Medicaid coverage and 11% of uninsured women.

Appendix Table 1

Appendix Table 2

Appendix Table 2: Mammography Rates by State, 2014-2016


Percent of women ages 40 and older who report having had a mammogram within the past 2 years

StateAll WomenWhiteBlackHispanicAsian & Native
Hawaiian or Pacific Islander
American Indian/
Alaska Native
United States73%73%78%72%72%67%
Alabama73%71%79%n/an/a68%
Alaska79%79%83%70%n/an/a
Arizona75%71%79%67%n/an/a
Arkansas76%75%80%77%77%n/a
California75%73%81%60%72%n/a
Colorado78%76%n/a79%79%n/a
Connecticut61%62%n/a47%n/an/a
Delaware73%73%79%72%n/an/a
DC67%67%73%69%n/an/a
Florida74%74%80%73%n/an/a
Georgia63%62%n/an/an/a68%
Hawaii71%72%74%57%n/a63%
Idaho74%74%76%n/an/an/a
Illinois74%72%78%73%n/an/a
Indiana77%77%n/an/an/a60%
Iowa78%77%84%77%69%71%
Kansas81%81%81%83%82%n/a
Kentucky75%75%79%72%78%n/a
Louisiana76%77%75%72%59%69%
Maine68%67%71%n/an/an/a
Maryland69%68%77%79%n/an/a
Massachusetts68%68%n/a54%n/a66%
Michigan69%70%70%55%n/a56%
Minnesota68%67%69%70%70%n/a
Mississippi78%78%n/an/an/an/a
Missouri75%74%80%79%71%n/a
Montana65%65%n/a66%n/a64%
Nebraska74%74%77%79%67%63%
Nevada76%76%78%62%n/a71%
New Hampshire72%73%n/an/an/a67%
New Jersey73%72%78%70%n/a88%
New Mexico70%70%76%67%61%63%
New York68%67%70%62%n/a72%
North Carolina69%70%n/a62%n/an/a
North Dakota72%72%76%69%n/an/a
Ohio81%81%75%80%n/an/a
Oklahoma72%71%77%58%n/an/a
Oregon75%75%n/an/an/a71%
Pennsylvania72%72%78%n/an/an/a
Rhode Island69%69%72%66%73%64%
South Carolina67%68%n/a61%n/an/a
South Dakota66%66%72%n/an/an/a
Tennessee73%73%n/an/an/an/a
Texas75%75%84%70%61%n/a
Utah71%71%75%64%73%62%
Vermont72%72%75%n/an/an/a
Virginia75%76%76%n/an/an/a
Washington63%64%n/a60%n/an/a
West Virginia76%77%83%74%76%n/a
Wisconsin64%67%n/a74%64%n/a
Wyoming79%n/an/a79%n/an/a

Breast Cancer Treatment and Side Effects

This was originally published by breastcancer.org here.


In recent years, there’s been an explosion of life-saving treatment advances against breast cancer, bringing new hope and excitement. Instead of only one or two options, today there’s an overwhelming menu of treatment choices that fight the complex mix of cells in each individual cancer. The decisions — surgery, then perhaps radiation, hormonal (anti-estrogen) therapy, and/or chemotherapy — can feel overwhelming.

Breastcancer.org can help you understand your cancer stage and appropriate options, so you and your doctors can arrive at the best treatment plan for YOU.

In the following pages of the Treatment and Side Effects section, you can learn about:Planning Your Treatment What types of treatment are available, the most likely sequence of treatments, treatment options by cancer stage, and fitting treatment into your schedule.Getting a Second OpinionReasons for getting a second opinion about your treatment plan, how to go about getting one, and what to do once you’ve got it.SurgeryBreast-conserving surgery (lumpectomy), mastectomy, and lymph node dissection, and what to expect from each. Also included: Prophylactic surgery and breast reconstruction.ChemotherapyHow chemotherapy works, who should get it, different types and combinations, and side effects and how to manage them.Radiation TherapyHow radiation therapy works, who it’s for, advantages, side effects, and what to expect when you get it.Hormonal TherapyThe link between hormones and breast cancer and how different groups of drugs — including ERDs, SERMs, and aromatase inhibitors — can affect that link. Also covered: Side effects of hormonal therapies.Targeted TherapyHow different drugs work, who should get them, how they’re given, side effects, and major studies.ImmunotherapyWhat is immunotherapy, different types of immunotherapy, and who it’s for.Complementary and Holistic MedicineHow complementary medicine techniques such as acupuncture, meditation, and yoga could be a helpful addition to your regular medical treatment. Includes research on complementary techniques and ways to find qualified practitioners.Drugs for Treatment and Risk ReductionA reference list of drugs used to treat and reduce the risk of breast cancer, including how they work, to whom they are typically given, and side effects.Treatments for PainWays to treat cancer- and treatment-related pain, including types of medications and tips on talking to your doctors about pain.Treatment Side EffectsA reference list of side effects and ways to manage them.LymphedemaAll about lymphedema, including who is at risk, what to watch out for, how to reduce risk of lymphedema flare-ups, and how to find a lymphedema therapist.Clinical TrialsWhat clinical trials are and how they work, why they’re important, and how to find trials that may be appropriate for you.

A New Standard of Care for HER2-Positive Metastatic Breast Cancer?

This podcast was originally published by Dr. Rashmi Murthy on December 11, 2019 on breastcancer.org here.


Dr. Rashmi Murthy, assistant professor of breast medical oncology at the University of Texas MD Anderson Cancer Center in Houston, discusses the results of the HER2CLIMB study that she presented at the 2019 San Antonio Breast Cancer Symposium showing that the experimental medicine tucatinib offers benefits to people diagnosed with HER2-positive metastatic breast cancer and may be a new standard of care.

Listen to the episode to hear Dr. Murthy explain:

  • A summary of the study results
  • Why this study included people with brain metastases
  • The side effects of tucatinib
  • Why she thinks the results are practice changing

5 Things Newly Diagnosed Breast Cancer Patients Should Know

This was originally published by Cynthia Demarco on April 19, 2019 on MD Anderson Cancer Center here.


If you’ve just received a breast cancer diagnosis, you probably have a lot of questions: What type of breast cancer do I have? How advanced is it? Do I qualify for any clinical trials? Can my doctor provide the treatment I need?

Before you start making treatment plans and scheduling appointments, here are five things to know.

Get an accurate diagnosis before starting treatment

Not all breast cancers are the same, so it’s important to get an accurate diagnosis right from the start. This is particularly true if you have a rare or very aggressive form of the disease, such as inflammatory or triple-negative breast cancer.

That’s because the type of breast cancer, as well as its stage and location, can determine the types of treatment you’ll be offered, as well as those you’re not eligible for.

“We offer precise treatments based on precise diagnoses,” says Lavinia Middleton, M.D. “That’s why I believe everyone should get a second opinion. A second opinion can be a game-changer. About 25% of our patients will see a change in their diagnosis.”

Where you go first for breast cancer treatment matters

All patients who come to MD Anderson will have their diagnoses confirmed by our doctors. This ensures that your cancer is both correctly identified and accurately staged — two crucial steps in determining which treatment plans you’ll be offered.

“Your first shot is your best shot at beating cancer,” says Makesha Miggins, M.D. “So, when patients come to us after they’ve already been elsewhere, their cancer treatment is often more challenging. That’s why I tell people to come to MD Anderson first.”

“If my cancer had been just a little more advanced, it would have been considered stage IV, and my care would have been palliative instead of curative,” adds Jenée Bobbora, an inflammatory breast cancer survivor. “But my doctor insisted that my cancer was at stage IIIc, not IV, so my treatment included chemotherapy, a double mastectomy and radiation. And I’ve shown no evidence of disease since 2003.”

Seek out the experts for your breast cancer diagnosis and treatment

It’s also critical to choose a cancer center with extensive experience in treating your particular type of breast cancer.

MD Anderson sees thousands of breast cancer patients annually, and has entire teams of specialists focused on specific types of breast cancer, such as triple-negative and hereditary cancers.

“Not only can we identify rare types of cancer with confidence, we can also keep women from having invasive diagnostic procedures for conditions that are not cancer,” says Therese Bevers, M.D.

“Breast cancer can have so many different variables,” adds Kelly Hunt, M.D. “And each one influences our treatment recommendations, because each one can significantly impact a patient’s response to different therapies. It’s critical to know these things before leaping in, because often by doing chemotherapy or targeted therapy first, we’re able to shrink the tumor and eradicate cancer in the lymph nodes involved. That means we can do less surgery and still have excellent long-term results.”

Consider clinical trials for your breast cancer treatment

Clinical trial options exist for virtually every type and stage of breast cancer. But some clinical trials for breast cancer are limited to patients who have not yet begun treatment. That’s why it’s important to discuss your options with your physician as early as possible.

Over the past few years, clinical trials at MD Anderson have allowed our breast cancer patients to avoid double mastectomieshave tumors removed painlessly without general anesthesia, and explore more personalized treatment options.

“My trial was unique because I was able to start with traditional chemotherapy and move on to other treatments only if that didn’t work,” says breast cancer survivor Barbara Lewis, of the immunotherapy clinical trial she participated in. “Only seven months after diagnosis, there were no traces of cancer in my body. That’s about the best result you can get.”

Make multidisciplinary care mandatory

No matter what type of breast cancer you have, it’s crucial to seek treatment at a cancer center that offers multidisciplinary care. This approach, which was pioneered here at MD Anderson, brings together all of the specialists you’ll need for your care — such as oncologists, surgeons, radiation oncologists, etc. —  to formulate your treatment plan.

Coordinating patient care as a team ensures that every aspect of an individual’s situation is taken into account from the start. It also makes it easier for your care team to adapt and make changes to your treatment as it evolves.

“It’s all about preserving options,” Hunt says. “I see patients all the time who were treated elsewhere with surgery first, when that might not have been the best approach. Now, they need more surgery or other treatments. And they’re painted into a corner, because they have fewer options. Our comprehensive approach means patients don’t have to go through multiple procedures to get the best results.”

Multidisciplinary care also gives patients easy access to any additional support services they might need, such as social work counselorsdietitians, physical therapists, lymphedema specialists and support groups.

“My gynecologist gave me the name of three Houston oncologists to choose from, but it was up to me to check them out,” adds Helen Vollmer, on the challenging start to her breast cancer journey. But once she got to MD Anderson’s Breast Multi-Team Clinic, “It was all confined to one, incredibly caring place with a team who talked to each other and, more importantly, to me.”

Examining the Link Between Gestational Diabetes and Breast Cancer

Approximately 12% of all U.S. women will develop invasive breast cancer during the course of their lives. There are a number of common risk factors associated with breast cancer, such as excessive alcohol consumption, obesity, genetic mutations like BRCA1 and BRCA2, and a family history of breast cancer.  In recent years, the link between diabetes, and particularly gestational diabetes, and cancer has been examined more closely to determine whether this group of women are especially at risk. A better understanding of gestational diabetes and its long-term effects make it significantly easier to understand its link to breast cancer.

What exactly is gestational diabetes?

Gestational diabetes develops during pregnancy and can, when untreated, cause health complications for mother and baby. When a woman has gestational diabetes she will display high blood sugar levels that typically return to normal after the pregnancy. Although any complication during pregnancy can be alarming, it is important to note that gestational diabetes can generally easily be controlled through a healthy diet, regular exercise, and in extreme cases, medication. While gestational diabetes does not necessarily result in serious complications, it is important to be aware of the risks for both mom and baby.

The link between gestational diabetes and breast cancer

Although women with gestational diabetes do not present an increased risk of breast cancer according to studies that have been conducted, it does increase their risk of contracting type 2 diabetes later on. In fact, up to 10% of all women who had gestational diabetes will develop type 2 diabetes according to the National Institutes of Health. This can occur anywhere from within a few weeks after delivery to months or even years later.

Type 2 diabetes proven to increase breast cancer risk

The risk for developing breast cancer is significantly higher among women with type 2 diabetes according to findings published in Diabetes Care. Postmenopausal women above the age of 50 are most at risk with a 27% increased risk of breast cancer. Type 2 diabetes triggers a number of changes in the body such as high insulin level, high glucose levels, and increased inflammation that may increase breast cancer risk. The connection between type 2 diabetes and breast cancer may also be a two-way street as breast cancer survivors could be at an increased risk of developing diabetes following chemotherapy.

Despite gestational diabetes not having a direct impact on breast cancer risk it can, in a more indirect way, increase the risk. By following a healthy lifestyle after a gestational diabetes diagnoses it is possible to reduce the risk of type 2 diabetes later in life which has directly been linked to the onset of breast cancer.

Ten Things I Wish I Had Known When I was Diagnosed with Breast Cancer

As soon as the first golden leaves of autumn appear on the trees a feeling of sadness starts to descend over me. I’m catapulted back over the years to a late September day. A day that’s etched forever on my mind. The day I was diagnosed with breast cancer.

In the weeks that followed my diagnosis, I became enveloped in a sea of pink as Breast Cancer Awareness Month took place. But when October came to an end and the pink ribbon wearers disappeared, I was left wearing the everyday reality of the disease. Over a decade has passed since then and yet I still feel a sense of sadness when I think of that time and all I had yet to learn and go through. I can’t help wondering how much my experience might have been different if I had known then what I know now.

One thing I now know is that we owe it to those who come after us to share our hard-earned wisdom. So in that spirit, here are ten things I wish I had known back when I was a newly diagnosed patient.  I hope sharing these lessons may make the path towards recovery that little bit smoother for others who are new to this journey.

1. Everything in your life is about to change

Once you’ve been baptized in the fire of cancer your life as you knew it will be irrevocably changed. The apparent randomness of a cancer diagnosis can shake your sense of identity to its very core and afterwards nothing will ever feel certain again.   Cancer invades not only your body but every other area of your life, including your relationships, family life, friendships, finances, career, and even your sense of self. You may be surprised to find the people you thought you could count on disappear from your life. At the same time, you will be surprised to find support can also come from unexpected sources.

2. Online support is real

Among those unexpected sources will be the people you meet online. Online communities may be virtual but they are no less real in terms of support and advice. On Facebook and Twitter you can find patient communities which will be an invaluable source of information and support to you. Check out the #BCSM Twitter chat – a weekly chat for breast cancer patients and their caregivers.

3. You will feel fearful and anxious

One of the most common emotional and psychological responses to the experience of cancer is anxiety.  Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer pathway. Anxiety is a natural human response that serves a biological purpose. It’s the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. All of these signs indicate that sympathetic arousal of your nervous system has been activated, preparing you to stand your ground and fight or take flight and run away from danger.

Try this coping tip. When we are fearful and anxious we tend to breathe more shallowly.  Shallow breathing, which doesn’t allow enough oxygen to enter our bodies, can make us even more anxious. Practice taking some slow deep abdominal breaths.  Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.

4. You are your own best health advocate

Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available.  In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

5. Your will experience brain fog

Cognitive impairment, to a lesser or greater degree, can affect you both during and after your treatment. You may have the feeling that your cognitive abilities are slower and less acute than before – almost as if your brain is shrouded in a fog. We call this the “chemobrain” effect and the effect may persist for months or even years after treatment ends.  A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking.

PCCI symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. However, there are several things that you can do to help you cope with its symptoms. Read this article for more information.

6. You will experience bone-crushing tiredness

We all know what it’s like to feel tired – physically, mentally, and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough.  You experience a persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease.

A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you. Read How To Cope With Cancer-Related Fatigue for more tips and information.

7. You may be surprised by feelings of guilt

Cancer-related guilt is a complex emotion. You may feel guilty and worry that your lifestyle choices somehow contributed to a cancer diagnosis. If you learn that you carry the BRCA1/2 gene, you may feel guilty that you could pass this gene mutation on to your children.  Or you may feel guilty that your cancer was diagnosed at an earlier stage than a friend or family member who has a worse prognosis.  These feelings of guilt may surprise you, but it’s a perfectly normal reaction to a traumatic life event like cancer. Read How Do You Deal With Cancer Guilt to learn more about this topic.

8. You will feel pressured to stay in a positive frame of mind

I admit I caved in at the beginning to pressure to stay strong and positive when I was first diagnosed with breast cancer. I did it because it reassured the people around me.  While I accept that for some people maintaining a positive attitude is a valid coping mechanism, for myself and many others, the pressure to always show our sunny side is a denial of our pain, anger, grief, and suffering. I now believe by promoting this attitude in the face of cancer, we create unfair expectations and deprive patients of an outlet for their darker fears. This is my personal viewpoint, and it’s one that I don’t expect everyone to share. However, I mention it here so that those who are newly diagnosed don’t feel they have to always present a smiling face to the world. It really is ok to express your fears, your sadness, your anger, and your grief too.

9. You will need time to grieve

While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part of the experience. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life.   

10. Cancer doesn’t end when treatment does

I wish I had been better prepared for how I would feel when cancer treatment ended. I just assumed I would pick up where I had left off and get on with my life as if cancer was no more than a blip. I wish someone had told me that cancer doesn’t end when treatment does.    Sometimes, there can be a code of silence surrounding the aftermath of cancer treatment.  There is an expectation that when you walk out of hospital on that last day of treatment, your cancer story has ended. But in many ways it’s only just beginning.

I now know that cancer is more complicated than simply being disease free and that a physical cure doesn’t mark the end of the healing process. Adapting to changes in energy and activity levels, adjusting to altered relationships at work and in your personal relationships, coming to terms with a changed body image, and managing pain and treatment side effects are some of the things you will face in the post-treatment phase of recovery. Be compassionate and gentle with yourself as you move through this stage of your cancer journey. Don’t judge yourself or feel pressured by others to try to hurry this stage along.

Wrapping Up

Being diagnosed with cancer is a life-changing event. You will go through many emotions and experiences throughout the roller-coaster ride of diagnosis, treatment, and beyond. Each person will experience it in their own way. While there’s no right or wrong way to go through the experience, it’s important that you don’t ever feel as if you have to go through it alone. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.

Breast Cancer Before 40: How Can I Preserve My Fertility?

Breast Cancer Before 40: How Can I Preserve My Fertility? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente discusses fertility preservation in breast cancer patients under the age of 40 and the potential for pregnancy following treatment.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: What You Should Know


Transcript:

Dr. Stephanie Valente:

So, another issue that is really important for young women is discussing fertility preservation. And this really needs to happen at the time of their diagnosis. So, we know that the cytotoxic agents that we can give females just through chemotherapy can decrease the ovary and the ability for these women to have menstrual periods after chemotherapy. So, the ability for them to get pregnant naturally.

As well as some of the medications. So, somebody who has a breast cancer that is estrogen positive, the recommendation is for these women to be on hormone suppressant medicine for five to 10 years after their breast cancer diagnosis and treatment, therefore not being able to be pregnant while on these medications. So, talking with young women when they get diagnosed about their family planning and their fertility options up front before they have surgery or chemotherapy is really beneficial.

And whether or not they need to see a fertility preservation specialist. If they want to consider IVF. Or if they have a gene, looking at genetic testing for their future offspring. So, these are all conversations that really need to happen before these women begin chemotherapy if they need it.

And the good thing is that at the young women’s clinic, these fertility specialists are embedded in the clinic. So, they are able to get an appointment with them right away. And a lot of times if these women do want to undergo fertility preservation, that can happen within 10 days of seeing the specialist. So, it really doesn’t delay their care. And we do know that it is safe even with the breast cancer diagnosis.

The other thing is that we do offer a medicine which is a GRNH agonist which will kind of essentially shut down the ovaries during chemotherapy to help protect them so that when a young woman is done with chemotherapy, it helps the ovary kind of get back to normal a little bit sooner.

So, it sounds good in theory. Unfortunately, it’s not something that is covered by insurance companies right now. And so, fertility preservation is expensive. And so, the good thing is there are a lot of groups that put together packages and stuff for these young women to be able to afford it. But it is pretty pricey. So, for those that can afford it, it is a great option. And a lot of them do take advantage of it. I think there are a lot of misconceptions about it. Number one is that patients don’t really know if it’s safe.

Number two, they are scared about their overall diagnosis and a potential delay and 10 days might make some of them afraid that doing that is a good option. Another thing is when these women come in with a diagnosis of breast cancer, they see a surgeon, a medical oncologist, a radiation oncologist, a plastic surgeon.

And so a lot of times an extra appointment at that point in time is just really overwhelming for these women. So, our goal is to kind of refocus and say, “Hey, the good news is that with our modern therapies you’re going to be here for a long time. So, let’s plan for the future now so that in the future you’ve got options.”

Breast Cancer Before 40: What You Should Know

Breast Cancer Before 40: What You Should Know from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente reviews key information for women under the age of 40 with breast cancer, including risk, treatment approaches and the role of genetic testing.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: How Can I Preserve My Fertility?


Transcript:

Sure. So, when we talk about breast cancer in young women, usually we are referring to women under the age of 40. And the prevalence for breast cancer in general is one out of eight women. For women under the age of 40, it’s about a seven percent incidence of breast cancer. So, it’s about a seven percent incidence in the general population in the United States. So, that’s about 12,500 women per year are diagnosed under the age of 40 with breast cancer.

So, the prevalence has pretty much been the same over the years. We used to think that women diagnosed at a younger age had a more aggressive breast cancer. But the more we look at things, the more we realize that women under the age of 40 usually are diagnosed at a later stage because it’s not something that somebody in their 20s or 30s is thinking that a breast lump equates to cancer. So, these women unfortunately present at a later stage.

Many times, it’s because they are pregnant, breastfeeding or just not having any family history where the first thing they think of when they get a lump is that they actually have breast cancer.

So, the first thing is women under the age of 40 usually present at a later stage, meaning that they have larger cancers, and the cancers because they are larger have had more time to spread to the lymph nodes. So, these women they don’t necessarily have more aggressive breast cancers than older women, it’s just that it’s found at a later stage.

So, the treatment options are the same for young women with breast cancer. So, depending on the size of the tumor and the size of her breast, women are given the option for a lumpectomy which usually is follow by radiation versus a mastectomy. And studies have shown that either surgical choice is a good option for women. And that one surgery doesn’t make a young woman, or an older woman live any longer.

That the survival for breast cancer is based on stage not the choice of surgery that they pick.

So, one of the first things is that women under the age of 50 – the average age for breast cancer in the United States is between 64 and 68.

So, if you are under the age of 50 or under the age of 40 there’s a higher chance that maybe these women carry a gene that would increase the risk of getting breast cancer. And so nowadays, we test over 21 genes. But these genes can increase their risk of getting breast cancer not only in the breast they have the breast cancer in, but in their other breast as well. It also increases the risk for other types of cancers such as ovarian cancer. And they could potentially pass this gene on to their kids.

So, sometimes women – and this is the great thing about academic medicine. Everything is changing so quickly with the modern research. So, a lot of times a woman who is triple negative, which is an estrogen receptor negative breast cancer.

If they are genetic positive for the BRCA gene, they qualify for certain medications or chemotherapy that we know targets specifically that type of cancer and their gene. So, that’s why it is important for some of these women to get genetic testing to see if the certain chemotherapy regimens or medicines that we have would benefit their type of cancer.

So, one of the things for any woman diagnosed with breast cancer at a young age is to offer those women genetic testing. And sometimes it can be a relief or sometimes it can be very challenging for these women to think, “Oh my gosh. I have this gene. I’m at increased risk for more cancers.” And that potentially they could pass that on to their children.

So, having the women who come in meet with a genetics counselor to go over the risks. And the reality is that of all the women under the age of 50 that test for the gene, only 10 percent actually carry the gene.

So, the good thing is that 90 percent most likely don’t have the gene. But it still is an anxiety provoking thing for these women to go through.

Another thing is that these women a lot of times are younger. So, they have either two things – young children to take care of which is extremely difficult to mange an already stressful motherhood. You throw in a diagnosis of cancer, whether or not there is a dad involved or a father that needs to help out with these kids. A lot of times their families need to help out. So, we have a psych oncologist that’s part of our team. And it’s really great. How do you tell your kids you have cancer? And how do you manage kind of day-to-day life with going through this? So, that’s another great program that is offered. And importantly for a woman who doesn’t have children but maybe desires to have children or even to have more children than the ones that she has,
looking at fertility options for young women is huge.

So, we know that some of the chemotherapy that we give breast cancer patients decreases their ability to have children in the future. So, the chemotherapy can shut down the ovaries. So, sometimes women – and this is the great thing about academic
medicine. Everything is changing so quickly with the modern research. So, a lot of times a woman who is triple negative, which is an estrogen receptor negative breast cancer.

If they are genetic positive for the BRCA gene, they qualify for certain medications or chemotherapy that we know targets specifically that type of cancer and their gene. So, that’s why it is important for some of these women to get genetic testing to see if the certain chemotherapy regimens or medicines that we have would benefit their type of cancer.

So, the one thing is that I tell these women that breast cancer takes a good year between chemotherapy if they need it, surgery, radiation of they need it and the whole process of recovery. That is really takes a good solid year before they are kind of done going to their doctor’s appointments. But the reality is that for an early stage breast cancer, studies have show for young women the overall survival is over 92 percent. So, I say, “This is going to be a tough year. We are going to get through this together. And the good thing is that you are going to be alive in five, 10, 15, 20 years. And so, our goal is to get you the best quality of life not only now but in the future.”

As far as hope for young women with breast cancer, things are changing so fast. The medicine that’s out there – we’re doing these studies where women are getting chemotherapy and by the time they get to surgery about 40 to 60 percent of the tissue that I take out has no residual cancer. That’s phenomenal. That means that the medications that these women are getting are working really well for their cancer. And so, the hope is that in 10 years I don’t have a job because the medicine that they are getting works so well that the cancer can be removed without needing surgery. And so, I think in our lifetime we will find either a cure or a complete resolution of breast cancer.

Notable News July 2019

So much for the dog days of Summer. July was a super active Notable News month full of information. There are risks and recalls to be aware of, along with some very encouraging news about exciting new research and treatments. So, while you may not want to hear that you should probably consider getting a colonoscopy ASAP, you’ll be relieved to learn that some cancers may have much less invasive diagnostic tools on the horizon. Oh, and there are a couple links to some really interesting (although alarming) longer reads; just in case you’re embracing the dog days, and need some reading material, this summer.

Increased Cancer Risk

Colon cancer is on the rise for people younger than 50, reports cbsnews.com. The rate has increased over the past decade from 10 percent of all cases to about 12 percent. While there is no concrete explanation as to why colon cancer is increasing among the younger age group, one possibility is that it is linked to modern diets and the gut microbiome. Conversely, colon cancer rates are declining among those 50 and older, largely because of colonoscopy screenings which detect polyps before they become cancerous. Find out more below.

Breast implants that have been linked to cancer are being recalled, according to nytimes.com. The textured implants were banned in Europe late last year and are now being recalled in the United States by the Food and Drug Administration (FDA). The implants are linked to anaplastic large-cell lymphoma. It is a rare cancer of the immune system that develops in the tissue around the implant. Removing the implant and scar tissue around it is effective in curing the cancer in most cases, but if it is not found early it can spread and be deadly. Symptoms are swelling and fluid around the implant, and patients should have symptoms checked by their doctor. More information about the implants can be found below.

There is a link between radioactive iodine (RAI) treatment and cancer deaths, says cancer.gov. RAI has been commonly used to treat hyperthyroidism since the 1940s. An association between the dose of RAI treatment and long-term risk of death from cancers, including breast cancer, has been found in a study led by researchers at the National Cancer Institute. More research is needed to better understand the risks and the benefits of the treatments, but in the meantime, the information will help patients discuss hyperthyroid treatment options with their doctors. More information about the research can be found below.

Treatment and Detection

Immunotherapy may work in treating brain cancer, says medicalxpress.com. Researchers have found a way to make the CAR T immune therapy more effective against glioblastoma, the most common and most deadly form of brain cancer. Previous research showed that not all of the tumors could be targeted by the T cells. So, in order to more strategically target the tumors, researchers used a bi-specific T-cell engager, or “BiTE”, that makes it possible for CAR T cancer-killing cells to be sent to specific targets, making the treatment more effective. Learn more about the complicated, but promising, process below.

There may be a better, non-invasive way to detect bladder cancer, reports medicalnewstoday.com. Researchers in Spain have proposed using electronic tongues. The devices can detect or “taste” soluble compounds by using software and sensors. The tongues, used to analyze food, water, wine, and explosives, can also be used to detect diseases by testing samples of biofluid. Using the tongues to test urine samples could be an easy and inexpensive way to detect bladder cancer in the early stages. Learn more about the proposed tongue testing below.

Researchers may have found a new way to treat ovarian cancer, according to medicalnewstoday.com. Researchers have identified an enzyme known as IDH1 that encourages the growth of high-grade serous ovarian cancer, the most common form of ovarian cancer. The cancer is difficult to detect in early stages and hard to treat because it often develops a resistance to chemotherapy. Researchers found that when they blocked the IDH1 enzyme, the cancer cells were unable to divide and grow. The research also suggests that blocking the enzyme works on the cancer cells that have spread to other parts of the body as well as where the cancer originated. More information about this encouraging research can be found below.

Cancer-Causing Toxins

If you’ve never heard of ethylene oxide, you might want to consider reading the article ‘Residents Unaware of Cancer-Causing Toxins in Air’ from webmd.com. Ethylene oxide is an invisible chemical with no noticeable odor. It is used to sterilize medical equipment and make antifreeze, and it is on the EPA’s list of chemicals that definitely cause cancer. It is also an airborne toxin in areas that have been flagged as high-cancer risk, but many of the residents of those areas have no idea they are being exposed.

Another article worth reading this month can be found at huffpost.com. A new plastics plant is planning to come to an area in the middle of Louisiana’s “Cancer Alley”, and the residents, tired of cancer-causing chemical pollutants, are fighting back. Read about their path to empowerment below.


Resource Links:

cbsnews.com

Colon Cancer Study Finds Colon Cancer Rates Rising for Patients Under 50

nytimes.com

Breast Implants Linked to Rare Cancer Are Recalled Worldwide

cancer.gov

NCI study finds long-term increased risk of cancer death following common treatment for hyperthyroidism

medicalxpress.com

Immune therapy takes a ‘BiTE’ out of brain cancer

medicalnewstoday.com

‘Electronic tongues’ may help diagnose early stage bladder cancer

Could targeting this enzyme halt ovarian cancer?

webmd.com

Residents Unaware of Cancer-Causing Toxin in Air

huffpost.com

A Community In America’s ‘Cancer Alley’ Fights For Its Life Against A Plastics Plant

Notable News – June 2019

It’s official! The nation’s cancer mortality rate continues to decline, says cancer.gov. The finding was revealed in this year’s annual report regarding the status of cancer in the country. The report shows that cancer death rates have continued to decline in men, women, and children from 1999 to 2016. Specifically, lung, bladder, and larynx cancers are decreasing, which is attributed to the decline in tobacco use. Conversely, cancers related to obesity are increasing. The highest overall cancer incidence rates occurred in black men and white women. The lowest rates were among Asian/Pacific Islander men and women. In addition, researchers looked specifically at cancer trends among those aged 20 to 49. In this group women had higher cancer and death rates than men, which is the opposite of the data among all age groups. Breast cancer, thyroid cancer, and melanoma were identified as the most common cancers on the rise among 20 to 49 year old women. The report, published last month in the Journal of the National Cancer Institute, is put together by the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), the American Cancer Society (ACS), and the North American Association of Central Registries (NAACCR). Find more detailed information about the annual report here.

The decline in cancer deaths just may have a lot to do with the amazing strides being made in understanding cancer and its risk factors, ways to diagnose it, and ways to treat it. Researchers at Yale have made a discovery about how metastasis, the spread of cancer, occurs on the molecular level that could lead to new ways of treating cancer, reports medicalexpress.com. While the study focused on renal cancer, understanding metastasis on the molecular level could lead to new testing and treatment for all types of cancer. Find more information about the study and the metastasis process here.

It’s important to know if you are at risk for certain cancers and having children through IVF may be one of them, reports thesun.co.uk. A 21-year study analyzing over 600,000 Danish women suggests that women who have had children using IVF are more likely to develop breast cancer. In addition, women who had their first child through IVF when they were 40 or older, were 65 percent more likely to develop breast cancer than women of the same age who conceived naturally. The drugs given to women during IVF to stimulate the ovaries may be the culprit. They increase levels of estrogen, a known factor in the occurrence of breast cancer. Make sure you are staying on top of your breast cancer screenings if you had children using IVF, and learn more about the study here.

Also reported by thesun.co.uk, is good news about early detection, specifically for prostate cancer. Scientists have developed a simple urine test that could show signs of prostate cancer five years early. The test, which could be available in as few as five years, looks for changes in specific genes. If the changes are noted, further testing is done. The process would mean that some men would not have to have invasive testing procedures and others would know of their prostate cancer risk earlier. Learn more about the promising new test here.

Finally, of interest this month is an article by theatlantic.com regarding the two technologies that are changing the future of cancer treatment, and the way in which oncologists are looking at treating the disease. The article points to immunotherapy and CAR T-cell therapy as kindler, gentler approaches to cancer treatment. Chemotherapy, which is the most successful treatment to date, as the article points out, can make the treatment process brutal. Oncologists are turning to the new therapies to treat cancer without the harsh side effects that come with chemo. The article is a quick read and it provides hope for anyone who is or may be affected by cancer. That means all of us. Check it out here.

Patient Profile: A Follow Up with Meredith Cronin

Meredith Cronin

Breast Cancer

You may remember Meredith Cronin from our three-part breast cancer series in October. She shared her experience of being diagnosed with and treated for breast cancer seven years ago at the age of 37. She had three young children at the time and remembered being grateful that she was so busy with her family that she didn’t have time to become weighed down by her illness. “Attitude is everything,” she told us. Meredith wanted as much time as possible with her family so she did everything she could to combat the cancer and make sure it wouldn’t come back. She had a double mastectomy, she did chemotherapy and radiation, and she got a second opinion from a research hospital. When her treatments wrapped up, her doctors told her they didn’t expect her back. She was cancer free.

Coincidentally, the same week Meredith shared her story, she had surgery to investigate a lump she’d found under her arm. The lump was malignant. Her cancer came back. Needless to say, her doctors were all very surprised. The lump was in a tricky area near blood vessels, nerves, and scar tissue. She had a second surgery to make sure the margins were clean and then she began, what will ultimately be, 30 radiation treatments. The radiation is precautionary and preventive. “The doctor says I’m cancer free at this time,” she says, but Meredith and her doctors want to be sure the cancer is gone for good this time and doesn’t come back again. She goes for treatment every day and twice on Fridays so she can have it finished by the end of this month.

Despite the intense radiation, Meredith says she is feeling good. She doesn’t have a lot of fatigue and her skin is holding up. Her two youngest children have even been able to come to treatments with her. She says it helps them to see that she’s okay so they feel better about what’s going on. Her recurrence was pretty upsetting for all of them, but they’ve been able to keep a positive perspective. She says her husband summed it up pretty well when he said, “The short term sucks, but the long term looks good.” And, so far the kids all seem to be focusing on the long term and supporting their mom. “They like to wear their pink,” says Meredith.

Much like her first round with cancer, Meredith is being thorough and aggressive in her treatments. In addition to radiation, she is eating well and working out every day. This week, she is going to a research hospital for a second opinion on whether or not she should add more therapies to her current treatment. “The second opinion is more about doing chemo or if they have another suggestion,” says Meredith. Her doctors now aren’t recommending chemotherapy due to the risks associated with it. Long term effects of chemotherapy can include lung, heart and kidney problems as well as the risk of developing a second cancer.

Meredith has also started taking injections to force menopause as another preventive step. Once in menopause, she’s able to take a more effective medication than the one she has been taking. She says she doesn’t know what to expect from menopause, but she’s willing to do whatever she has to in order to keep the cancer from coming back. She’ll do the injections until maybe spring 2019 when she’ll have a hysterectomy and possibly an oophorectomy, where both ovaries are removed. That’s always been part of her preventive plan someday. “I’ve been putting it off for years,” she says. “I’m kind of kicking myself now.”

Vigilance about staying on top of your health is the message that Meredith most wants to share. Even when you’ve been told you’re cancer free, you have to check out every lump, every change that comes along. “Stay on top of it. Keep following up with it,” she says. Meredith says she’s learned that even though her cancer is gone, she still has a lot to do to make sure it stays that way. She’s cancer free, but not necessarily free from cancer. “I’m just going to keep doing what needs to be done,” she says.

You can find the three part series on breast cancer featuring Meredith and five other women on the Patient Empowerment Network blogPart IPart II, and Part III.

Notable News: October 2018

How tall are you? Do you eat breakfast cereal? What’s your blood pressure? Oh, and, moms, how old were you when you had babies? The answers to these questions just might be an indicator of your cancer risk. Sounds strange, doesn’t it? Well, if October’s Notable News teaches us anything, it’s that strange is not so unusual, especially when it comes to cancer risks.

The mysterious workings of the human body continue to offer up surprises, and appropriately enough for October, the latest surprise is about breast cancer, according to medicalexpress.com. For some time, scientists have known that women who have babies before the age of 30 have a reduced risk of getting breast cancer later in life, but now they know the specific week in which the risk reduction occurs. Women who have babies after 34 weeks averaged a 13.6 percent lower risk of developing breast cancer than did women who had no children. The risk reduction if the pregnancy ended just one week earlier was only 2.4 percent. Researchers don’t yet know what magic happens in the 34th week, but they do know that women must be under the age of 30 to benefit from it. More information can be found here.

While we’re on the subject of breast cancer, let’s talk about men because they get breast cancer, too. As Patient Empowerment Network blogger and breast cancer survivor Marie Ennis-O’Connor noted in her October 19 post, Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other, breast cancer is not gender specific. While men make up less than one percent of all breast cancer occurrences, says breastcancer.org, an estimated 2,550 men in the United States have been or will be diagnosed this year. And because men are not routinely screened for breast cancer, they tend to be diagnosed when the disease is more advanced; therefore, it’s important for men to know the risk factors, which can be found here. While breast cancer awareness still focuses mainly on women, more attention is beginning to shift toward men, even making it’s way to primetime television. The series premiere of the new ABC drama A Million Little Things introduces a main male character who is a breast cancer survivor. More information about symptoms, diagnosis, and treatment of breast cancer in men can be found here. Please, take the time to find out if you, or the men you love, have any of the risk factors.

There’s a new risk factor to be mindful of…your height. That’s right. Your height. As reported by the guardian.com, the taller people among us are more likely to get cancer simply because they have more cells in their bodies. More cells means more opportunity for mutation. Apparently, it’s true for dogs, too. Bigger dogs, bigger risks. In humans, height seemed to cause an increased risk for 18 out of 23 cancers, including melanoma, which had a stronger link to height than researchers expected. Since there’s not much you can do about your height, researchers suggest that you focus on other risk factors instead, by maintaining a healthy weight and not smoking. Learn more about how height affects your cancer risk here.

You might want to consider breakfast cereal, too, reports freep.com. There is a chemical called glyphosate, the active ingredient in the weed killer, Roundup, that is showing up in products that are made with “conventionally grown” oats, which includes a lot of breakfast cereals. The International Agency for Research on Cancer says glyphosate is probably carcinogenic for humans, but Monsanto, the maker of Roundup, maintains the product is safe. While some experts say the information isn’t cause for hysteria, it is a good idea to pay attention to where your food comes from and what might be affecting it. You can find more about the glyphosate content in foods and which foods are affected here. It’s best to stay informed about the potential risks and use your best judgement.

The same holds true for those of you taking blood pressure medication. medicalexpress.com reports that some blood pressure medications might be linked to an increased lung cancer risk. The drugs are angiotensin converting enzyme inhibitor drugs (ACEIs), and the risk is elevated for people using the medication for five years or more. Overall, the risk is low, but is notable because of how widely ACEIs are prescribed. ACEIs are very effective at treating blood pressure and, if patients have concerns about any potential cancer risks, they should consider the risks and benefits with their doctors. There is still a lot more to be learned about ACEIs and their connection to lung cancer. You can find out more here.

Whether you’re a tall person who eats breakfast and has high blood pressure or you have some other strange cancer risk, the main thing to remember when it comes to risk factors is to stay informed, because when you have knowledge, you are empowered and that’s what it’s all about.

Patient Profiles: Breast Cancer Part III

This is the last installment in our three-part series profiling breast cancer survivors. In Part II, the women gave insight into the importance of their mental health and their own attitude as critical components of care. They also shared some of the ways in which they coped with cancer. Today, the women talk about the possibility of recurrence. So, we pick up with the final stage of Shannon’s preventive measures. Based on her history, she knows her cancer can come back, but she wanted to do everything she could to prevent it.

Shannon’s treatment didn’t stop at reconstruction. She opted to have an oophorectomy, which meant she had her ovaries and fallopian tubes removed. Remember, her moms’s cancer had returned and been terminal, so Shannon wanted to take every preventive measure she could. “My fear and my worry is that hers came back 16 years later and she died at 65. If the same thing happened to me, I would die before I’m 60,” says Shannon. Her breast cancer diagnosis meant she was at higher risk for female cancers and she wanted to do whatever she could to have as much time as she could. “I’m relatively young,” she says. “I wanted to give myself as long as I could.” In order to have the procedure, Shannon had to take medication that would put her into menopause and the side effects that came with menopause affect her quality of life, so she says she goes back and forth on whether or not she would do the oophorectomy, if she had it to do all over again.

Although she did have melanoma a couple of years ago, Tina has been 27 years without recurrence of breast cancer. “I didn’t really feel safe until five years out,” she says, but adds that you never really know if it’s coming back, and that you should always be vigilant about checking for lumps. There is a risk of late recurrence, i.e. breast cancer that comes back more than five years after diagnosis and treatment, and it is more likely if it was later stage when first diagnosed, and if the cancer was HR positive.

Like Tina, Betty also had a second cancer. Her colon cancer was discovered in 2009 and her doctor estimated that it had been growing for ten years, but because of where it was growing in relation to the colon wall, the tumor was able to be cleanly removed and no treatment was required. Because her breast cancer was ductal and not in the tissue, and her doctor was able to get very clean margins, Betty says she doesn’t worry about it returning. “I’m more afraid of the colon cancer returning,” she says.

Diana has been nine years without recurrence, but she says, “My guard is always up.” Maybe it’s because her mother and grandmother both had breast cancer, and, despite being BRCA negative, she believes her cancer is hereditary. Shannon feels the same way and says she believes 100 percent that her cancer is genetic. The genetic testing available is limited compared to the number of genes in the human body so, Shannon says, “There’s a long way to go.” And, while it’s early for Shannon to think about recurrence, she can’t help but consider it. “I don’t want to spend every day thinking about cancer. I don’t want that to be my life,” she says, “but it is in the back of my head.” Not knowing how the cancer might come back makes Shannon especially uneasy because she doesn’t have a plan for it.

When Meredith finished treatment, her doctor said he didn’t expect to see her back for recurrence. The odds were in her favor that she would remain cancer free. Meredith, like Betty, says she got the best cancer to get if you’re going to get cancer, but unlike the other ladies, Meredith was not expecting to get cancer. She didn’t have the same family history. Her only red flag was that she had an aunt that had ovarian cancer and she thought maybe her grandmother had breast cancer when she was 90. Meredith was young, she had three small children, and breast cancer was not on her mind. In fact, she was so sure she didn’t have it, that she took her 18-month-old daughter with her when she got the results from her lumpectomy. But, Meredith, who is also BRCA negative, did have cancer, and while her cancer was ductal, it was bigger than it should have been, and there was also a spot on her other breast that needed to be watched. Wanting to be proactive Meredith opted for a double mastectomy with reconstruction. She also had chemotherapy, because the cancer was found in a lymph node, and she lost all her hair. While she possibly could have gone without radiation, she opted for it. Again, she wanted to be aggressive and as proactive in her treatment as possible. She wanted to make sure her cancer was gone.

About a month ago, Meredith found another lump under her arm. She had a scan that was all clear except for the spot where the lump is located. She and her doctors are hoping it is just scar tissue, but she’ll have a lumpectomy this week and then she’ll wait for the biopsy results, which she is guessing will take several days. “The waiting is the worst,” she says. Liz, as a caregiver, felt the same way about waiting, “The worst part of all of it was waiting for the results.”

Tina, who also had young children at diagnosis, recalls that she just wanted to live long enough to raise her children. She says she found it difficult to accept the idea that she might die before her kids were grown. That thought is clearly on Meredith’s mind as well. “I remember saying, ‘Just give me five more years,’ and now it’s been seven years, and I’m saying, ‘Just give me seven more years,’ but no amount of time is enough,” she says. You can hear in her voice that she’s trying to be brave, and she says, “Hopefully, it will all be fine,” but it’s scary because, even though Meredith got the best cancer you can get if you’re going to get cancer, it is still cancer.

Anxious to hear Meredith’s results? We are, too, and as soon as she gets her results, she’s promised to follow up with us. We’re hoping for good news, and we will let you know as soon as we can.


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient Profiles: Breast Cancer Part II

In the first part of of this three-part series, you were introduced to Betty, her daughter, Liz, Shannon, Tina, and Diana. You learned that women who are diagnosed with breast cancer are not really all that surprised to get a diagnosis. They are often expecting it. Having breasts is a risk factor, and women have breasts. In today’s installment, you’ll meet Meredith. She wasn’t expecting to get breast cancer. But, before we meet her, we’ll pick up where we left off in part one: the matter of hair loss and chemotherapy.

Whether or not a survivor lost her hair during cancer treatment, it’s one of the first things she says about her experience. Shannon even lost her eyelashes and they never came back. She says she knows it’s a little thing, but it still bothers her. Betty, didn’t lose her hair. Like a growing number of women, she did not have to have chemotherapy. She says avoiding chemo made a huge difference in her experience. At the time, Betty was receiving treatment at a research hospital, and there was a test available to her that would determine how beneficial chemotherapy would be in treating her cancer. She was told that if she scored between a one and a 19, she would not need chemotherapy. Betty scored an 18. While she had to pay for the costly test out of pocket and wait for insurance to reimburse her, she says it was worth it. “It was so helpful,” she says. “Because of what chemo does to your body, you don’t want it unless you need it.” Side effects from chemotherapy can include anemia, diarrhea, fatigue, fertility issues, hair changes/loss, memory loss, neuropathy, menopause and menopausal symptoms, mouth and throat sores, nausea, vaginal dryness, vomiting, bone loss/osteoporosis, heart problems, and vision problems. The test Betty had is now being more widely used and, as you may have read on the Patient Empowerment Network blog in the June Notable News here, researchers have learned that 70 percent of women don’t need chemotherapy when they have the most common type of early-stage breast cancer, with low and moderate risk of recurrence. The test looks at cells from a tumor biopsy to determine what is known as a patient’s recurrence score. Patients are scored between zero and 100, with zero being the lowest risk of recurrence. Researchers now know that women who score less than 25 do not necessarily need chemotherapy.

Betty also did not need to have a mastectomy. She had a lumpectomy followed by intraoperative radiation therapy, a 30-minute procedure that involves surgically placing a ball of radiation in the spot where the tumor had been. The procedure meant that Betty only had to have a single radiation treatment, and it helps reduce the side effects of radiation. Betty was eligible for that form of radiation in part because of the size of her breasts. She says she told the doctor, “I’ve been lugging around these big things my entire life and they are finally paying off.”

The intraoperative radiation was another benefit of being at a research hospital. At the time of Betty’s treatment, the procedure wasn’t being widely used and wasn’t available through her local doctors. Receiving treatment at a research hospital also made a difference in Diana’s care. She recalls going in to her local doctor’s office for her test results, and no one in the office would make eye contact with her. Then, when the doctor came in to see her, he told her she had breast cancer, that he wanted to treat it right away, that he’d see her next Tuesday, and then he left the room. Diana says she was left there shaking. “He has a heart, but he didn’t show it,” says Diana, who then went to a research hospital for a second opinion. Her new doctor was much better, she says, and adds that the shoulder of his lab coat was always dirty from the smudge of make up left behind after his patients hugged him.

The importance of good doctors that you are comfortable with seemed to be one of the critical components of care to all the women.They all talked about how much they liked and appreciated their doctors. “A really good physician realizes psychological and spiritual care are just as important,” says Tina, who sought the services of a psychologist after her treatment. She was struggling with anxiety and depression and found that the counseling really helped her to work through her emotions about having cancer, which emphasizes another, perhaps the largest, critical component of care during treatment: emotional and mental support and health. Diana says she found support online and emphasized the importance of staying positive through treatment. “Count your positives,” she says. “That is the key.” Along the same line, Betty says, “The number one thing is attitude.” Actually, she and Liz say “attitude” in unison, and Betty adds, “I think attitude is a big piece of it.” Meredith Cronin who was diagnosed at age 37, says “Attitude is everything.” Meredith, who had three children under the age of six when she was diagnosed, says she understands how easily you could get depressed as a cancer patient. “I always say that I felt blessed that I was young and so busy that I didn’t have time to be depressed.”

Shannon, who was accused of being negative because of her detailed planning to get breast cancer before she actually had breast cancer, says she wasn’t negative; she was realistic and it was that take on it and her preparation and planning that helped her maintain emotional balance.“It didn’t affect me emotionally as much as I think it would have,” she says. Shannon coped through research and attention to details, and she describes her experience in the kind of detail that makes you think she’d just had it done yesterday rather than three years ago. Betty used a different method of coping and says she’s been able to let a lot of the experience go. “I don’t dwell in that place,” she says. She and Liz also found a lot of humor in the experience. The clickity-clack of someone’s shoes, Betty’s preoccupation with cutting out recipes from a magazine, or the ridiculousness of what must have been an excruciating procedure, were all fodder for coping. It’s not that Betty doesn’t take cancer seriously, but she was better able to cope with the diagnosis by finding humor in the situation. “We laughed through our tears,” she says. Liz says that early on in the experience, they imagined the worst possible scenario, which made handling what really happened more doable. The ways of coping with cancer are as varied and vast as are the treatment options.

Next time, in Part III, recurrence.


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2