01/06/2012 11:26 am ET Updated Mar 07, 2012

What Your Mammogram Won't Tell You

The madness started at the end of August when I discovered a lump in my breast. It wasn't the typical small lump that I have had before; this one was big, much bigger. I was a year late for this checkup, but wasn't concerned, as my last checkup was perfect. I made an appointment to have a diagnostic mammogram. What's the difference between a diagnostic mammogram and a traditional mammogram? It's not always covered by insurance and you need a physician's prescription for it, but it can save your life so don't even think about that.

After arriving at the doctor's office in uptown Manhattan, I explained to the technician that I discovered a lump at 3 o'clock in my left breast. After a physical check, she said she didn't feel a lump. How's that possible? I feel the lump. Well it wasn't possible; you know your body better than anyone. After re-taking images three times, the doctor arrived. She told me the mammogram doesn't show a lump. Normally, I would have been thrilled to get this news, but the problem is, I have a big lump. My diagnostic script allows for an ultrasound in addition to a traditional mammogram, and I wasn't leaving until I had one. Sounds funny? The doctor tells me I don't have a lump and go home! As easy as it could have been to get up and leave, I knew I couldn't.

Minutes later the ultrasound confirmed a large lump -- left breast, 3 o'clock. The doctor told me I would need a needle biopsy. I told her I would call back for an appointment and left. I wanted a second opinion to be sure of what kind of biopsy to have. Within days I got an appointment with one of the best at Cornell. I offered her my history of prior films that I brought with me, but she just went on to the physical. Guess what she found? Nothing! She didn't feel any lump. She sent me for an ultrasound. The radiologist confirmed the lump and said it was nothing to be concerned about. The lump looked normal and saw no need for a biopsy. Whew! As I got dressed, I looked down at the files of my history I brought with me. I offered them to the radiologist and she took them. They enter them into a program to see any changes in your breasts. She assured me she was not concerned and I will likely not hear from her again.

She called the next day and told me I needed a core biopsy. There was no pain with the biopsy, only the torture of waiting for the results. The doctor had me come in to explain it was a benign papillary lesion. Although the areas they had biopsied were benign, it's possible that other parts of it could be malignant. I now needed a lumpectomy. During the two weeks prior to my surgery, the lump appeared to be getting larger, but I was assured it was my imagination.

I went in for surgery early October. So much time had passed since the end of August, when I first discovered the lump. Now, I was finally getting rid of it. I tried to stay strong during the last couple months, but as I was wheeled to surgery, I couldn't stop the tears from falling. A few days later I went for the results.

I was misdiagnosed. I have a rare Phyllodes tumor; it's benign, at least for now. If you've never heard of Phyllodes, you're not alone -- many doctors haven't, either. Phyllodes tumors are rare breast tumors that develop in the stroma (connective tissue) of the breast and account for less than 1 percent of all breast tumors. The majority of patients present a palpable mass of about five centimeters, with a history of rapid growth. By the time my mass was taken out it was around five centimeters -- and yes, it had grown. There is little research on Phyllodes, but one thing I have read over and over is that they can grow back from benign to malignant. The best way to prevent that from happening is to take a large margin of the surrounding tissue where the tumor is removed. The problem is when they removed my lump, they thought it was a papillary lesion so they didn't remove the recommended margin. The doctor says I don't have enough tissue to go back for more, which is why some women go back for mastectomies even with a benign tumor like mine; others will watch and wait.

If the right margin is taken, the chances are slim of it coming back. But what if they don't? There is not enough research to know, but there are women like me who had benign Phyllodes tumors whose tumors came back malignant. More women than makes me comfortable. Phyllodes tumors cannot be treated with radiation or chemo, which means if they come back malignant, chances are you're going to die sooner rather than later, which is why some choose to have a mastectomy even when it is benign. In fact, some organizations consider all Phyllodes tumors, even benign ones, a form of breast cancer because they can't be treated. Phyllodes tumors can only be identified by complete removal of the lump and then biopsied in a very specific way. Otherwise, your doctor cannot be sure, and that means you can't be sure.

Some doctors believe some Phyllodes tumors may be misdiagnosed for fibroadenoma (the most common benign tumor you may be familiar with, since most lumps are diagnosed as this). Make sure you feel confident with what you are being told. I am speaking with a doctor at Sloan next week to be sure I shouldn't take out more tissue or even something more drastic. In the end, I want to be sure. You know your body better than anyone. Be persistent. Knowing can save your life.

For more by Loren Ridinger, click here.

For more on breast cancer, click here.