Monday, February 17, 2014

Another Study, Another Dangerous Message

We breast cancer survivors are an opinionated bunch. There are the pinkers who believe in everything that is pink and the anti-pink people who abhor it as sappy symbol for a serious disease. There are the proponents of do-everything-you-can-to-kill-this and the we're-not-doing-anything women. No one is right, no one is wrong. It is your body. You can choose to deal with your cancer any way you can.

Another raging debate is on the value of mammography screening. Almost two years ago the US Task Force announced that women don't need mammograms until after the age of 50 and then only every two years. Readers of No Surrender are well aware of how I feel about this approach. Have I run my own study? Yes, in a way. Through the stories of the thousands of women I have met in Cancerland since 2001.

Last week, yet another study came out. It can be read HERE on the NY Time's site. This "study" states that mammograms not only don't work, but they are dangerous and find tumors that would be just fine if left alone. And if there is any doubt, give the patient Tamoxifen and she'll be fine.

Tamoxifen may help early stage breast cancers that are responsive to estrogen. But not all breast cancers are. When you are diagnosed with Triple Negative Breast Cancer, there is no magic bullet. There is nothing to do but get it removed from your body as soon as you possibly can and treat it as aggressively as you possibly again. Then, and only then, do you have a chance of beating it.

A young woman cannot walk around with a triple negative breast cancer tumor and be "safe." The tumors are more aggressive when you are young. If you wait too long, it may have had a chance to spread to other organs. Thirty percent of breast cancers are metastatic, which means they have spread to other organs, and it also means there is no cure.

My message to the people publishing these studies is personal. I was young. I had a whole life before me. I could have had children. I had no fear of cancer because it didn't run in my family. Cancer? Me? I was so stupid then. Eighty percent of breast cancers are found in women with no family history. I also didn't have a tumor that could be "controlled" with Tamoxifen, as this study dangerously suggests as a panacea.

Because I have a gynecologist who believes in early screening, he got me into the radiology office long before I turned 40, the age, back then, where women were told to get their first mammo. The radiologist found a shadow. She told me to wait six months and watch it. My gynecologist had me scheduled with a breast surgeon for surgery within three days. The biopsy was malignant. The pathology was triple negative breast cancer. It rated the highest score on Bloom-Richardson aggressiveness scale.  They removed it by lumpectomy and I endured six months of chemotherapy that I am, today, grateful for. Even though I spent the three days after each treatment on the bathroom floor I was so sick from it, I thank God for it.

Women don't walk away from triple negative breast cancer. You can't just "have" it and it can be managed, as this study suggests. The study only discusses estrogen responsive tumors. I had no history. I do not come from Ashkenazi heritage. I never smoked. I was young and I had the most aggressive breast cancer out there. If this study came out in 2001, I could have said to my doctor, "Hey listen, I don't need this for years. I'm not going for a mammogram."  And, today, I would be dead. It is interesting to note that my tumor back then only could be seen on mammogram, and wasn't detectible on sonogram.

On February 7th, I hit the seven year mark of my second breast cancer diagnosis. This one was responsive to estrogen. More surgeries, nine months of chemo, followed by more surgeries and estrogen blocking drugs for rest of my life were the result of that one. This was the kind tumor the study talks about. Estrogen responsive tumors, according to them, may not be dangerous and we are over-diagnosed, medicated and treated. Well, this harmless tumor spread to my lymph nodes. We found it just in time.

I beg you to not let these studies lull you into a false sense of pink security. There is so much insane cheerfulness surrounding the marketing of breast cancer today that all the pink cotton candy has camouflaged the women who are dying from this hideous disease. We've lost so many. We are losing 40,000 a year. But you wouldn't know it from reports like the one that just came out and all the cute Save the Bodacious Tatas frat party mass marketing of breast cancer. The woman dying isn't smiling. She isn't covered in pink. She has her family around her or she may be alone.  Are we going to add to 40,000 deaths because we are now telling women that mammography is unnecessary?

It's up to you. Tell my story. Tell your story. Read the No Surrender forum and tell their stories. People die from this disease. Some don't have to. Telling a woman to not be proactive about her health is one of the most dangerous messages out there. Step in to stop it.

Please read about our Before Forty Initiative which helps spread the word among African American women and their increased risk of developing triple negative breast cancer at a young age. Tell your friends. You may save their lives. You may save your own.

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