Hi, my name is Cindy and I am a 55-year old teacher. My story is a long one, so please hang on! Over the years, I have undergone several lumpectomies to remove nearly a dozen fibroadenomas in both breasts. In 2001, a large benign phylloides tumor was diagnosed in my left breast. It, too, was surgically removed with a lumpectomy. I asked my surgeon about a mastectomy at that time, but the surgeon did not recommend anything beyond a lumpectomy. In retrospect, I wish I had not listened to her!
The tumor returned, as a malignant phylloides, in December 2005. It showed up on my mammogram and ultrasound. I had a needle biopsy that yielded inconclusive results, so a lumpectomy was performed. The pathology was then sent away to Vanderbilt University to a breast cancer pathology expert who confirmed it as being malignant, low to medium grade. The pathology report indicated a very narrow surgical margin posterior. At that time, I opted for a double mastectomy. In fact, I insisted on it. I read that until the 1970's the standard procedure, even for a benign phylloides, was mastectomy. I think they had it right back then.
Several factors entered into my decision. First of all, I took into consideration my extensive family history of all kinds of cancer, not just breast cancer. My mom and several relatives had breast cancer (a different kind from mine.) My dad died with primary liver cancer. To top it all off, a week after I was diagnosed with malignant phylloides, my only sibling, a sister, was diagnosed with thyroid cancer. After her treatment for thyroid cancer, she had a seizure and was diagnosed with a second, primary brain cancer. She is having chemotherapy and is doing well.
Anyhow, back to the double mastectomy. When the pathology reports came back from the double mastectomy, the pathologists found a borderline malignant phylloides, in the other breast, that had been missed in all the ultrasounds and mammos!!!! Thank God, I opted to undergo the double mastectomy!! Apparently, it is very, very rare for phylloides to be malignant, let alone bilateral, but I did have phylloides in both breasts. I am not telling you this to scare you. I know my situation may be different from yours. But I figured: why combat this nasty little thing by hitting it with a feather when I could attack it with a sledgehammer? I wanted the sledgehammer!
After my diagnosis, I did my homework and consulted with 2 oncologists who specialize in breast cancer here in Atlanta. One of them, Dr. Ruth O'Regan, has appeared on Good Morning America and heads up Emory University's breast cancer research. Both breast oncologists tell me no chemo or radiation is normally recommended for this kind of cancer. I had a chest x-ray, and a colonoscopy, both of which I passed with flying colors. I have blood tests. While a mammogram is obviously no longer applicable for me, I have had a CT scan of my chest. It is my understanding that MRIís of the chest can be helpful in future diagnosis, as well.
At the same time as the double mastectomy, I had decided to have immediate reconstruction with tissue expanders. Following the surgery, I became infected. One of the tissue expanders had to be removed within a month of the surgery. I also became infected in the other side. It was then that I switched plastic surgeons. The new plastic surgeon was amazing and did everything possible to help me keep the other tissue expander. We worked with an infectious disease doctor, and I had 42 home IV infusions of an antibiotic, vancomycin. However, the second tissue expander remained infected and had to be surgically removed, as well.
I am finally cancer free and free of the infection. Whew! My current plan is to give this time and perspective and to consider reconstruction (or not) at a later date. It is alarming how little is known about phylloides. There is not a great deal of research out there. From what my doctors have indicated, and from what I have read and experienced, phylloides can recur and may possibly become more aggressive; changing from benign to borderline or malignant. I am not an expert or a healthcare professional. I do not wish to be an alarmist, but I would advise anyone with phylloides to stay vigilant and not let any follow-ups slide. Be proactive and insist on a second opinion if you feel that you need it. Change doctors if you are getting poor results. Do your homework.
Good luck to all, and God bless.