Breast Cancer Awareness Month

This is my first October since joining Women of Mystery, and since October is Breast Cancer Awareness Month, and I am a survivor, I’d like to take this opportunity to blog about it. However, I am not a medical professional, and this is only one breast cancer survivor’s tale.

In 2004 at age 42, I was diagnosed with lobular cancer, a form of breast cancer I never heard of until the day the breast surgeon told me I had three malignant tumors that were five-and-a-half, three, and two centimeters in size. He said that ten percent of women who are diagnosed with breast cancer have lobular cancer; ninety percent get ductal; and a very small percentage get Inflammatory Breast Cancer (which, by the way, is a very aggressive form of breast cancer). You can read about the kinds of breast cancer here.

When my husband asked the surgeon what happened, since I’d be having mammograms for years due to family history, he replied, “lobular cancer is difficult to detect on mammograms and sonograms.” I asked him, “Do women know about this?” I always considered myself a fairly well-read individual, yet I wasn’t aware of it.

The sad part was that a few years earlier, I had complained to my gynecologist of a lump I detected; he sent me for a sonogram. It was allegedly “normal.” I was confused, since I felt something different, something hard -- what women are always told to look out for.

I did something no woman should ever do -- I gave up on breast self exams (BSEs). I had brought it to the doctor’s attention, it was supposedly “nothing,” and I thought I had to accept the fact that I had lumpy breasts, which many women do. I didn’t want to keep bothering the doctor, so I assumed that the mammograms I was having each year would detect an abnormality.

I was wrong.

How could I know there is a form of breast cancer that is not easily detected on a mammogram or sonogram?

The moral of the story is this: every woman must be her own best advocate. If she conducts BSEs on a regular basis, and one day she feels something hard, something different, she must be vigilant. She knows her body better than any doctor. Also, in my breast cancer journey, I learned a few things that I wish I knew ahead of time:

• Get mammograms at Breast Care Centers, not imaging centers where they also look at elbows, knees, etc.
• If a woman who conducts BSEs on a regular basis discovers something unusual in her breast -- something hard and different than she’s used to feeling -- she should see her gynecologist or even consider seeing a breast surgeon.
• If a sonogram or mammogram doesn’t reveal anything, a biopsy should be ordered. However, this is a catch-22. If the sono or mammo doesn’t pick it up, how do they know where to biopsy? (My first biopsy results were shockingly "benign." I needed an excisional biopsy to confirm the cancer.) It’s very expensive and may be difficult to get approval for, but an MRI can pick up abnormalities.
• I was unaware that birth control pills are estrogen-filled. My gynecologist prescribed these to regulate my period after I complained about irregular periods, without conducting any further tests. I had no idea that the birth control pills were feeding into my estrogen-positive cancer that I didn’t know I had. Had the doctor either consulted my chart or asked me directly if I had a history of breast cancer in my family, he would not have prescribed these pills.

I’ve known women who died when they were in their twenties and thirties from breast cancer, which is scary when the recommendation of a woman’s first mammo is age 40 (unless there is family history). Again, knowing your body and being your own best advocate is of the utmost importance.

Some books about breast cancer that I enjoyed:

• The Victoria Secret’s Catalog Never Stops Coming: And Other Lessons I Learned From Breast Cancer by Jennie Nash.

• Why I Wore My Lipstick to My Mastectomy by Geralyn Lucas.

• Lopsided: How Having Breast Cancer Can be Really Distracting - A Memoir by Meredith Norton.

I am a Reach to Recovery volunteer for the American Cancer Society, and I volunteered at the Survivor’s tent last Sunday during the American Cancer Society’s Making Strides for Breast Cancer walk at Jones Beach. The rain may have kept some walkers away, but I was touched when I saw an entire football team, a lacrosse team, teams of families (including multi-generations), the Suffolk County Association of Women Police (of which I’m a former member), survivors and their families, men walking in honor of the women in their lives, children walking for their moms, aunts, grandmothers, friends, and groups of friends, despite the wind and rain. Their spirits were uplifting. I gave out T-shirts to survivors and helped walkers fill out “In Honor of” and “In Memory of” signs to wear.

You can make a donation to the American Cancer Society in honor or in memory of a loved one by visiting here.

If you’re active on Twitter, why not consider participating in “tweets for boobs.” For this month of October, every time you tweet “#tweetsforboobs” you are making a $1 pledge for donation to the Susan G. Komen foundation. If you follow @tweetsforboobs, they will DM you with your total donation in November to mail.

I attended a wake last night for a member of my breast cancer support group who lost her battle. I’m attending her funeral this morning. She was a beautiful soul, only 44 years old. Rest in peace, dear Quinn. You will be missed.