A Young Nurse Tells Her Story of Breast Cancer Misdiagnosis and Survival

Type of breast cancer: 5cm Ductal Carcinoma In situ (DCIS), 4mm invasive HER2 positive, ER negative
Lymph Node Status: positive, first node and for isolated tumor cluster
Tumor Description: grade 3 for 4mm HER2 positive invasive cancer
Treatments: lumpectomy, mastectomy, sentinel node biopsy, CMF chemo, 9 weeks of Herceptin (late treatment)
Survivor for: 7 Years

Q: You are a registered nurse, a health-aware person, married to a medical internist physician. When you discovered your breast lump, how did you react?

A: Like many women who find a breast lump, particularly young women, I was shocked. Terrified, I turned to trusted and experienced physicians for consultation, assessment, and guidance. I trusted these doctors because my husband -- a doctor -- recommended them. My lump originally was about a quarter of an inch. My clinical breast exams, mammogram, multiple breast ultrasounds, and breast biopsy did not reveal breast cancer. My doctors told me many times that I did not have breast cancer. They said my lump was only a cyst.

Q: It seems like your doctors followed proper procedure. Did you have any follow-up studies scheduled?
A: I was referred to a surgeon for long-term monitoring for a year. I went to all my follow-up exams, only to be repeatedly assured by my surgical doctor that my breast lump was benign fibrocystic condition, even after a fine needle breast biopsy was done.

Q: During the time your surgeon saw you and your lump didn't fade away, what happened?
A: When I first saw the breast surgeon, I had another breast ultrasound and clinical exam and was assured the lump was benign fibrocystic breast condition, nothing to worry about, and that a lot of young women have breast lumps.

I was also scheduled for follow-up in three weeks, and when that appointment arrived, I was again reassured that my lump was benign. When the cyst started to enlarge, three months later, I saw my breast surgeon again, and he said that breast cysts could harmlessly increase in size in pre-menopausal women like me.

Then he did a fine needle aspiration for the enlarged lump, removed some fluid, and assured me that my lump was only a cyst. A pathologist also rendered an opinion on the fine needle aspiration biopsy, declaring it was benign. About six months later, I returned to the same breast surgeon, informing him that the lump seemed larger and that I was worried, especially since my grandmother had just died of breast cancer. The surgeon did another breast ultrasound and assured me once again that my lump was benign and that second-degree relatives, like grandmothers, would not increase my risk for breast cancer.

Q: How were you finally diagnosed?
A: I went back to the surgeon a year and a half after finding the original lump as my lump was very large and uncomfortable, and I had a repeat fine needle aspirate biopsy, alarmingly learning that I had breast cancer.

Q: Your diagnosis was delayed by 17 months. Since it grew so large in that time, that must have affected your treatment decisions. What treatments did you have?
A: Finally, my surgeon removed my lump, which had increased in original size from a small quarter inch lump to about 7 cm in diameter.

Due to the large size, it ultimately required a mastectomy, nodal dissection, sentinel lymph node dissection and an additional excisional surgery to clear the extending margins of the untreated cancer. Furthermore, I had chemotherapy, because my cancer was found to have spread to my lymph node. I ultimately required Herceptin for my aggressive cancer subtype, HER2 positive and hormonal negative, often found in young women.

Q: You were initially misdiagnosed with a cyst or benign fibrocystic condition. It seems to me that fellow medical professionals would have taken extra care to give you an accurate diagnosis. But being a health professional didn't protect you?
A: No, it did not protect me. This was one of the most mismanaged medical cases that I have ever known about. Despite having several doctors with years of medical experience, excellent credentials and past records of good performance assess my breast lump, my breast cancer diagnosis was ultimately delayed for almost a year and a half, resulting in many more treatments and a worse prognosis. Nothing in my years of training as a nurse prepared me to be able to see through and dodge my breast cancer misdiagnosis. Nor was my husband, a medical internist physician, able to guide me from avoiding my misdiagnosis, as he literally could not see through the mistakes that my assessing physicians were making.

Q: After your rigorous treatments and taking time to recover, how did you start solving the mystery of your misdiagnosis?

A: I had several physicians give second, third, and even fourth opinions on my mammogram, breast ultrasounds, and breast biopsy results. Through these opinions, I ultimately discovered that there were multiple errors in my breast diagnostic testing and that my surgeon over-relied on a needle aspirate biopsy rather than doing a more definitive core needle or excisional (surgical) biopsy.

Additionally, I learned that my initial breast biopsy was misread and was positive for pre-cancer, ductal carcinoma in situ or DCIS. Unfortunately, due to my delayed diagnosis, my DCIS or precancer got so large that it spread, an event that does not usually occur in DCIS, if caught early enough. I did eventually file a medical malpractice lawsuit and settled out of court, and I filed a complaint with the Office of Professional Conduct in my state against my negligent radiologist, surgeon, and pathologist who misdiagnosed me.

Q: Your story sounds unusual. Is this kind of misdiagnosis uncommon?
A: My story is not uncommon! At least 10,000 women per year are misdiagnosed with breast cancer and most of these women are young! Physicians commonly misdiagnose young women due to age bias where breast cancer is not expected in a young woman, as the median age for a breast cancer diagnosis is 63 years old.

As a result, often physicians do not do all the correct tests and aggressive procedures to adequately rule out cancer, thinking cancer is not possible in a young woman. This is particularly unfortunate as young age is a negative prognostic factor in breast cancer diagnosis, where cancer is often more aggressive, and a delayed diagnosis may gravely impact on prognosis.

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