“You have breast cancer.” Those four words change the lives of nearly 300,000 women each year who are diagnosed with breast cancer. According to the Breast Cancer Research Foundation, there are more than 4 million breast cancer survivors in the United States today. Each of these survivors has their own story about how they beat cancer. For Karen Young, AFMC’s Medicaid Management Information System Trainer and Program Developer and 14-year breast cancer survivor, her recovery started by trusting her body and learning to maintain persistent communication with her doctor.
It's Karen’s story, so I’ll let her tell it to you as she told it to me.
“My story began when I noticed a lump in my breast in early October 2008 while I was taking a shower. I didn’t worry about it much because I had my annual Pap smear scheduled at the end of the month, so I planned to mention it to my doctor at that time,” Karen says. This went against everything that Karen knew from her work as a BreastCare rep for the Arkansas Department of Health.
“We would tell women all the time to go have a mammogram, perform self-breast exams, and that if they felt or saw something abnormal, to have it checked out as soon as possible. For one reason or another, I didn’t do that.”
“I went to my doctor, and during my exam, he said he could feel what I was talking about, but I shouldn’t be concerned. The lump was probably due to my under-wire bras. To ease my mind, he asked if I would like him to send for a mammogram. I agreed.”
Karen had her ultrasound appointment the same day. “The tech also said she could feel what I was talking about, but nothing was showing up on the mammogram. She called in the radiologist to double-check, and he said he couldn’t see anything either. He also thought it was nothing to worry about and that it was probably because of my under-wire bra, as my doctor had said.”
The radiologist recommended that if Karen was still worried, she could go see a breast surgeon. However, because her radiologist did not make a formal referral, it would be an out-of-pocket expense for Karen to see the surgeon. She elected to wait instead. “I’m thinking, if my OB/GYN, the mammogram, the ultrasound, and the radiologist all say it’s nothing, then it must be nothing.”
If my OB/GYN, the mammogram, the ultrasound, and the radiologist all say it's nothing, then it must be nothing. But how can something be nothing?
In March 2009, Karen began to be concerned again about the lump she felt. Back in September 2008, she began a rigorous workout routine at the gym six days per week, and she could still feel the lump in March, over six months later.
“I decided that I needed to have a complete physical, so I scheduled a physical with my primary care physician. At the visit, he did complete the physical, but he asked if there was anything else that I needed or if I had any concerns. I hesitated, but I went ahead and mentioned the lump to him. He said he would be happy to check it. He felt what I was talking about. I told him about what the OB/GYN and radiologist had said to me as well as what the results of the mammogram and ultrasound were.”
“My primary care physician said (and I will never forget this), ‘If they’re telling you it’s nothing, but I can feel something here, how can something be nothing?’ He immediately referred me to a breast surgeon to put a name to what I was experiencing.”
“We made an appointment with the breast surgeon, and…that nothing was a big something: I had stage 4 breast cancer. The surgeon told me if I had waited until my next OB/GYN visit in October, I wouldn’t have made it.”
If I had waited until my next OB/GYN visit, I wouldn't have made it.
Karen underwent a double mastectomy, six months of chemo, three months of radiation, and reconstructive surgery after her diagnosis. She lost all of her hair and missed nearly a year of work. Karen will celebrate her 15-year cancerversary in June, a mark of the incredible journey she undertook and the trust she had in herself to continue getting checked out, regardless of what the machines and doctors said.
Know the statistics. Debunk the myths.
There is a lot of misinformation about breast cancer, resulting in myths and misconceptions that circulate throughout the world. Make sure you know the statistics and learn the truth behind these common misconceptions. Only you know how you feel. Make sure that you know your body and that you take time to communicate your concerns with your doctor.
Myth: If you have a family history of breast cancer, you are likely to develop breast cancer, too.
While women with a family history of breast cancer are in a higher risk group, most women who have breast cancer, including Karen, have no family history. Only about 10% of breast cancers are related to an inherited gene mutation.
Myth: Breast cancer only affects middle-aged or older women.
Most cases of breast cancer occur in middle-aged or older women. However, you can be diagnosed with breast cancer at any time. In fact, according to the CDC, around 9% of new breast care cases in the United States are found in women under age 45, and these cases are more likely to be found at a later stage.
Myth: Bras with underwire can cause breast cancer.
Bras do not cause cancer, no matter what type you wear. There is no evidence to support that underwire bras (or any other type of clothing) restrict lymph fluid. There is also no evidence to support that going braless reduces the risk of breast cancer.
Myth: Finding a lump in your breast means you have breast cancer.
Only a small percentage of breast lumps are cancerous. However, you should never ignore a persistent lump, especially if the breast tissue changes. It is important to see your physician for a routine clinical breast exam. They can refer you for imaging and other tests to determine if the lump is a concern or not.
Open communication is good practice.
There is a good chance Karen would not be here if she had not remained persistent in her communication with multiple health care experts. As providers, it’s also important that we listen to our patients and do everything we can to alleviate their concerns. “I don’t blame the doctors who I saw,” Karen says. “When my charts don’t show anything, they don’t show anything. But you have to know when something isn’t right and keep being an advocate for yourself. Learn to express your concerns properly.”
Karen says it’s also important for providers to understand that not every patient can schedule an appointment with a specialist on their own. “You must believe in your patient as a health care provider and refer them to the right specialists who can help them. Some patients don’t have a lot of money to pay for a specialty appointment, so it’s important that you go ahead and refer them, so they pay low out-of-pocket costs or have it covered on their insurance.”
Know when something isn't right and keep being an advocate for yourself. Learn to express your concerns properly.
Cultivating a good relationship with your primary care provider is the key to taking control of your own health. “Even if you think you’re going to ask a stupid question or you’re going to sound crazy, ask your doctor anyway,” Karen says. “And if you’re having trouble communicating with your doctor, change doctors! You don’t have to stay with the same primary care provider if they’re not the right fit for you.”
Tell your story.
Since her treatment and recovery, Karen has spoken at several community events promoting breast cancer awareness. “I have been a part of fairs with the BreastCare program, modeled for the Runway to the Cure, and participated in the annual Susan G. Komen More than Pink Walk.
Karen also hosts cancerversary parties to celebrate every year of her cancer survival. “I bring in experts in cancer research and care, and we eat food and recognize those who have lost their lives from breast cancer.”
Most recently, Karen has shared her story at nursing homes, women’s clinics, and other community-based organizations, encouraging people to trust their bodies, talk to their doctors, and schedule breast exams regularly. Every woman who has been diagnosed with breast cancer has a story to tell. It’s important that we listen to these stories and continue to advocate for those who are fighting the battle against breast cancer.
Bookmark these helpful resources about breast cancer and talk to your doctor about the warning signs and risk factors.
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Karen Young is the Training and Program Developer for the AFMC/Medicaid Management Information System (MMIS) Team. She has been with AFMC since August of 2018. She has 33+ years of experience with Arkansas health care contracts, equipping her with the knowledge and skillsets to educate providers on important Medicaid informatoin and updates. Karen's personal experience with breast cancer, including the burden of high treatment costs, has inspired her to help others understand their rights as Medicaid beneficiaries.
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