Gerri Smoluk is an AML survivor, diagnosed at age 56 in 2016. She is currently in remission following successful completion of two rounds of induction therapy and four rounds of consolidation therapy (high-dose chemo) in 2016. Since her recovery Gerri has been exploring “pretirement” working part-time as a freelance medical writer, traveling, volunteering and exploring what she wants to do in the next phase of her life. Gerri spent most of her career as a drug development scientist. Full bio here >>
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.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
October is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts. Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems like everything causes cancer” is on the increase. The danger is that when people believe this, confusion and misinformation about risk factors also increase. This can lead to unnecessary worry and can even hinder good prevention and treatment decisions. So let’s untangle the facts from the fiction by busting ten of the most common myths which persist about breast cancer.
Myth #1: Finding a lump in your breast means you have breast cancer
Fact: Most breast lumps are caused by benign (noncancerous) changes, cysts, or other conditions.
Breast tissue is changing all the time because of fluctuating hormone levels, especially during times of menstruation and breastfeeding. It’s important to be aware of how your breasts normally look and feel, and know what changes to look for.
Take Action: While most breast lumps will not turn out to be cancer, lumps that feel harder or different from the rest of the breast (or the other breast), or change over time, should always be checked by your doctor.
Myth #2: Feeling pain in your breast is a symptom of breast cancer
Fact: Most breast cancers do not cause pain in the breast (although some do).
Many women experience breast pain or discomfort in the week leading up to their period. The pain usually goes away after menstruation. Other breast conditions, such as mastitis (an infection of the tissue of the breast that occurs most frequently during breastfeeding), may cause a more sudden pain.
Take Action: If you have breast pain that is severe or persists and is not related to the menstrual cycle, you should be checked by your doctor.
Myth #3: Breast cancer is a hereditary disease
Fact: Only 5% to 10% of breast cancers are thought to be hereditary. The other 90% are largely due lifestyle and environmental factors.
The risk in a person believing this myth is that they might think there is nothing they can do to prevent breast cancer if it is already in their family. Genetic testing can help you understand your inherited risk and allow you to make choices about your future care.
Some high-risk women also choose to have a prophylactic mastectomy to decrease their risk.
Take Action: Cancer is a complex group of diseases with many possible causes, including lifestyle factors such as smoking, diet, and physical activity. Lower your risk of developing breast cancer by maintaining a healthy weight, exercising regularly, and limiting the amount of alcohol you drink.
Myth #4: Only women get breast cancer
Fact: While the incidence of breast cancer in women is significantly higher than in men, men can get breast cancer.
Many people don’t think of men as having breasts. In fact both men and women have breast tissue, although men have much smaller amounts than women. According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment.
Take Action: Know the signs of male breast cancer. Symptoms include a hard lump underneath the nipple and areola and color change in the surrounding area.
Myth #5: Breast cancer only occurs in post-menopausal women
Fact: While it is true that the older a woman is, the higher her breast cancer risk becomes, breast cancer does occur in younger women.
Although breast cancer in young women is rare, more than 250,000 women living in the United States today were diagnosed with it under age 40. In young women, breast cancer tends to be diagnosed in its later stages and be more aggressive. Young women also have a higher mortality rate and higher risk of metastatic recurrence (return of breast cancer in areas beyond the breast).
There is no effective breast cancer screening tool yet for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool.
Take Action: Being breast aware is very important. Become familiar with how your breasts normally look and feel and, if you notice a change, you should see your doctor as soon as possible.
Myth #6: Wearing an underwire bra causes breast cancer
Fact: Claims that underwire bras cause breast cancer have been widely debunked as unscientific.
According to the myth, wearing your bra every night or for too long daily prevents your pores from being able to breathe. Sweat accumulates and toxins build up which are believed to cause breast cancer. Another version of this myth is that wearing a bra which is too tight or sleeping in your bra can cause breast cancer. The American Cancer Society (ACS) states “we do not know of any epidemiologic studies published in scientific journals that suggest bras directly contribute to breast cancer.”
Myth #7: Deodorants can cause breast cancer
Fact: There is no evidence to back the claims that deodorants and antiperspirants cause cancer.
People sometimes worry about whether chemicals in common products such as cosmetics or toiletries could cause cancer, but there is no good scientific evidence to show that these products affect the risk of cancer. According to Breastcancer.org, even the strongest antiperspirant doesn’t block all perspiration in the armpit. Most cancer-causing substances are removed by the kidneys and released through urine or processed by the liver. Toxins are cleared by lymph nodes and not by the sweat glands.
Take Action: If you still have concerns about the link between antiperspirants and breast cancer, see the NCI fact sheet on Antiperspirants/Deodorants and Breast Cancer for more information.
Myth #8: Breast cancer is a single disease
Fact: Breast cancer is not one disease, but a complex group of different types of tumours.
Until quite recently, breast cancer was thought of as one disease, so everybody got much the same treatment, which led to overtreatment for some patients. We now know that at a molecular level tumors act and respond to treatments differently. Researchers have to date classified breast cancer into 10 different subtypes. Having a more detailed system of tumor categories can help tailor treatment to individual patients and predict women’s survival more accurately.
Myth #9: Stress causes cancer
Fact: The scientific evidence that stress causes cancer is not conclusive.
Despite studies which show weak evidence of an association between stressful events and a diagnosis of cancer, many people still hold the belief that stress is a factor in causing cancer. It’s unrealistic to think we can avoid stress completely. Everyone feels stressed at some point in their lives. But long periods of stress can cause mental health problems such as anxiety and depression and can contribute to physical health problems such as high blood pressure, heart disease, and ulcers. It makes sense then to get our stress levels under control.
Take Action: Adopt healthier coping mechanisms, such as learning stress-management techniques, taking the time to eat healthily and exercising more.
Myth #10: Mammograms cause breast cancer
Fact: While mammograms do involve radiation exposure, the dose used is extremely low.
A mammogram (an x-ray of the breast) currently remains the gold standard for the early detection of breast cancer. Mammograms can detect lumps well before they can be felt, and the earlier that lumps are caught, the better one’s chances for survival. While it’s true that radiation is used in mammography, the amount is so small that any associated risks are tiny when compared to the benefits.
Take Action: According to the National Cancer Institute, the standard recommendation is an annual mammographic screening for women beginning at age 40. Base your decision on your physician’s recommendation and be sure to discuss any remaining questions or concerns you may have with your physician.
To wrap up, certain myths about breast cancer, though inaccurate, can nevertheless seem to make sense when we hear them repeated often enough. While some risk factors for breast cancer are out of our control, knowing and understanding our risks will help us make the best choices possible for ourselves and our loved ones.
 Young Survival Coalition statistics on breast cancer in younger women.
For information on galactocele, please check out the blog What is a Galactocele, and What Can I Do About It? and 12 Breast Cancer Myths And Facts You Should Be Aware Of
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
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