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Fibrocystic Breast Disease: My Story

Updated on April 26, 2012

What Is Fibrocystic Breast Disease?

Fibrocystic Breast Disease is a condition directly related to the hormonal changes of the menstrual cycle. Cysts and/or tumors develop in the breasts or armpits during ovulation and then disappear during the menses or vice versa. With the onset of menopause, the disease tends to go away. Fibrocystic Breast Disease also tends to be hereditary.

Women who have the disease tend to be at a lower risk of developing breast cancer. As my surgeon explained it to me, many breast cancers are linked to hormonal changes. Women with Fibrocystic Breast Disease go through hormonal changes every month that they have a period. Therefore, the changes that occur with the onset of menopause are not that drastic to the body. He explained that although living with the disease can be frustrating, the risk of breast cancer is significantly reduced.

My Experience

I was 15 years old when I found my first tumor while bathing. Two weeks later I was admitted to the hospital to have it surgically removed. When my mother and I went for my check-up following the surgery, my surgeon explained to us that I had Fibrocystic Breast Disease. He explained what it is and told us what I could expect - cysts or tumors every month for remainder of my child-bearing years. He informed me that most of the cysts and tumors would go away each month, but the ones that didn't reduce in size would need to be checked. I would need to do breast exams regularly to stay on top of the disease. He said that the older I got, the more frequent the troublesome ones would become.

When I was 23 I had a line of lumps from my armpit down to the side of my right breast. They were all cysts. After removing those, my surgeon (I had the same surgeon for all of my surgeries) informed me that I would need to come in every 2 years for a breast check-up. At age 27 I had a bilateral (both breasts) breast biopsy surgery. That was my third surgical procedure to remove cysts in one breast and a tumor in the other. My doctor suggested that I started coming for annual check-ups at that point.

Two years later I was in a car accident and shattered my left arm. I had to have a weighted cast to pull the pieces of bone apart and the cast had a sling that went through it to go around my neck. I could not wear a bra during that time. My arm was still in the cast when my appointment date came. I had noticed that the lumps I got those couple of months were significantly smaller than I had experienced before the accident. My doctor also noted that my breast tissues were a lot smoother. He said that the difference was most likely because I was not able to wear a bra at the time. He suggested that I refrain from wearing a bra or to at least not wear one that was snug or tight. He suggested a bra that was one cup size larger or else wear a camisole if not wearing a bra at all was out of the question. Having small breasts, I chose not to wear a bra anymore except when necessary. He also suggested that I not have mammograms due to the pressure that they put on the breast tissues. That was 33 years ago and I have not had any more lumps or surgeries. I also have not had any mammograms and have successfully made it through menopause with no problems.

Like Mother, Like Daughter

When my daughter was 15 she found her first breast lump. I took her to my surgeon, he removed it, and diagnosed her with Fibrocystic Breast Disease. He made the same suggestions to her about not wearing snug bras. Having larger breasts than me, she was not comfortable going bare-breasted. Instead, she wears a bra that is one cup size larger. That was her only surgery and she has had no further tumors or cysts, and is now 36 years old.


Self-Exams Are Key to Early Detection

Regular self-examinations of the breasts are key to early detection of cysts and tumors which can be or become cancerous. Any pain in or around the breasts or leakage from the nipples, whether lumps are detected or not, should be brought to your doctor's attention immediately. Early detection of cysts, tumors, leakage, or pain can make a big difference in diagnosis and treatment. Breast self-exams should be discussed at the onset of menses as a precaution. Awareness and early detection can be life-saving.

The self-exam can be done in the bath or shower, or lying down. Lumps can be more easily detected by placing the hand behind the head of the side to be examined with the elbow pointing out away from the ear. Use the other hand to make small circular motions on and around the breasts and up to the armpits. Repeat the same technique on the other side.


Most everything I have read about Fibrocystic Breast Disease suggests that there may be a link between caffeine and the disease. I cannot speak for other sufferers of the disease but I drink at least five cups of coffee every day and have for more than 30 years. My daughter drinks at least a half gallon of tea everyday and started drinking it as a young child. So, in our cases, caffeine has not seemed to be related to the disease at all. Just saying.


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      6 years ago

      That's really interesting that your physician said the risk of breast cancer is lower with Fibrocystic Breast Disease, because everything I've read said the risk is a little higher. I know that many people with the disease can get lumps that can lead to invasive procedures. Take care, Kelley


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