Never Stop Asking Questions
by Nancy M. Fee, [email protected]
My husband and I find a desperate need to share our story in hopes that it will help other woman know of the numerous options available today in the field of breast biopsies and treatments. According to an October 1, 1998 report released by the National Association of Breast Cancer Organizations (NABCO), the majority of women who undergo breast biopsies are not informed that newer, less-invasive biopsy techniques are available. The nationwide survey of 250 women who had undergone breast biopsies in the last three years showed that 80% received a traditional open surgical procedure and only 20% received a less invasive, percutaneous (through the skin) biopsy procedure. Fully two-thirds of those polled had been unaware of the new minimally invasive biopsy methods, and said their doctors did not discuss different biopsy options with them. Although that report was released more than a year ago, we found it to be true today.
You will read the words us, our, and we throughout my story. I must first tell you how very much my husband is a vital part of this story. From the three-hour doctor appointments to the final biopsies themselves, he was with me every step of the way. In addition, he spent hours surfing the Internet for as much material as he could find for us to read on breast cancer, biopsies and procedures. I truly am blessed to have such a loving husband who was always there for me, and I know if not for him I would not have a story to tell.
I was a 50-year-old homemaker from Orlando, Florida. On April 20, 2000 during my routine physical, my gynecologist felt two suspicious areas in my breasts and ordered a mammogram and ultrasound. On May 9th, these two tests were performed. It turned out that I had a 1.1-cm long oval mass in my left breast that was detected only by the ultrasound, and a close cluster of microcalcifications that was detected only by the mammogram. I also had a large, hard palpable mass (a mass which could be felt) in my right breast, which seemed to be of immediate concern. Needless to say, we were very concerned about these findings. I've been getting an annual mammogram now for the past five years as I have a large amount of fibrous tissue in both breasts. Until this year, however, I had not been aware of any abnormalities. That night we began researching the Internet for information on breast cancer, biopsies and procedures. The information we found was enormous. We read of minimally invasive techniques, which involve removing less tissue, yield less scarring and pain, involve only local anesthesia and can be done on an outpatient basis. Since 80% of biopsies are benign, removing the entire suspicious area is not necessary in the majority of cases. Minimally invasive techniques have been available since the early 1990s. There are multiple peer-reviewed studies establishing that these newer techniques are just as accurate in diagnosing breast cancer as the older traditional surgical methods. Years ago our mothers and grandmothers didn't have the choices we have today. Isn't new technology great? We were excited by what we had read and wanted to educate ourselves on the terminology before speaking with the doctors.
Our first step, however, was to research surgeons' backgrounds and medical history through the Net from a list of names available to us through our insurance company, then have my personal care physician (PCP) write the referral. We first made an appointment with a young woman surgeon whom we believed would be up-to-date on the new, less invasive procedures as she herself would surely prefer these methods. Upon her review of my x-rays and having performed a breast exam on me in her office, her immediate response to us was for me to have needle localization (open surgery) of all three areas. She explained the procedure to us as using two long needles inserted diagonally and placed opposite each other until they almost meet. She then would use the ends of the needles as a pointer to the area being removed. The cut would be approximately two inches long. She would remove the mass and surrounding tissue then would close with stitches which had to be removed at a later time.
We were shocked. We had read that open surgical biopsies remove considerably more tissue than minimally invasive biopsies and generally lead to more complications than the new minimally invasive techniques. Open biopsies are generally performed under general anesthesia, which carries more risks, and involve more post-operative bleeding and infection. They also may require an overnight (inpatient) hospital stay. We began asking her questions about alternative, less invasive biopsy procedures which we had read about. She reluctantly (and with an attitude I might add) agreed to discuss a stereotactic procedure (machine imaging to help guide the needle) for my microcalcifications and a percutaneous core needle biopsy (removes only small samples of tissue) for the oval mass in my left breast with the radiologist at Orlando Regional Healthcare System (ORHS), one of only two major hospital systems in greater Orlando. Please take note, unless trained on the equipment, surgeons do not perform these less invasive procedures. These procedures are usually performed by radiologists and trained staff thus, does not require the services of the surgeon.
The surgeon suggested she do a needle biopsy on the palpable mass that day in her office. She stated she could have the biopsy results back within two to three days and would leave the other procedures to the radiologist. Even with all we had read, this was new territory for us. We had only been looking for consoling answers to questions and good medical advise, but ignorantly agreed to the needle biopsy. I can't begin to explain how grotesque she was in performing that procedure on me that day in her office. From the terrible struggle she had inserting and removing the needles six separate times, forcefully pulling and ripping tissue with each removal, to the rough pressure of her hands while trying to locate the mass for placement of the needle with each insertion. Her procedure was most uncomfortable, mentally disturbing and resulted in a large amount of bruising which lasted for weeks thereafter.
Within two days the result of the biopsy was in: "Benign Fibroadipose Tissue, no Atypical Hyperplasia or Malignancy identified." Great news, right? Not for the surgeon, she stated she didn't feel comfortable with the amount of tissue that was biopsied and still believed it should be surgically removed. She also informed us that the radiologist would not perform the procedures that she had requested. When we asked her why they could not be performed, her only explanation was that the radiologist was in agreement with her original recommendation. At that point, the only thing she would do was needle localization on all three areas. She did tell us however, that we were welcome to go elsewhere and find a doctor who would perform the procedures we wanted done. She suggested we might find someone in the Tampa area, 70 miles from our home.
So once again we researched surgeon's names and their history on the Net and found one who seemed very versed in this field with many years' experience. But after waiting in his office for nearly two hours, we were met with arrogance in place of answers. He stated he had reviewed my x-rays then immediately recommended I have all three areas surgically removed. He had a copy of my biopsy results that had been faxed to him from the first surgeon's office. It was notably apparent he had not reviewed the results of my biopsy prior to our meeting in his office, neither did he review any of the written documentation I had provided for him. When asking him about less invasive procedures, he could not discuss them with us knowledgeably as he himself did not know the answers to our questions. He suggested we call ORHS and make an appointment to speak with the radiologist in which he believed to be the best on staff.
Before leaving his office, we asked him to describe the surgical procedure in which he would perform on me if I had the surgery. He explained to us he would make three separate two-inch cuts, remove the areas in question and their surrounding tissue and close with surgical stitches. In asking how much tissue would be removed, he specified each area removed would be approximately the size of a golf ball.
I was devastated. He wanted to remove three golf ball size masses from my breasts, which equated to 133 times the size of my left mass alone. We didn't even know if l had cancer. When we asked why remove so much tissue versus having a biopsy, he stated that this was routine. Routine for whom? He also informed us that if the tissue findings came back cancerous, he would suggest going back in and removing what would equate to an area the size of an orange or possibly a partial mastectomy. He told us too, that if he knew for sure that the palpable mass which had previously been biopsied was fibroadenoma (a dense growth of fibrous tissue and ducts), that we would not have to worry about it, as they are never cancerous. Once again, however, he suggested I have surgery to remove all three areas and informed me I really wouldn't notice much of a difference afterwards. Not much of a difference! I was going to be one golf ball size smaller in my right breast and he didn't think I'd notice. We left his office more upset and with more questions than we had when we arrived.
The first thing I did when I arrived home was to call to schedule an appointment with the radiologist at ORHS. I explained the reason for my call to the receptionist. She said she would convey my message and call me back. That day I received a call back from an associate within the department. She said she had spoken with the radiologist. The radiologist response to our request was that she does not make outside appointments, but would meet with us the day of the surgery to answer any questions or concerns that we may have at that time. The associate suggested she might be able to answer my questions on the phone, as she herself was very knowledgeable on the subject. Although she was very polite, most all of the questions I had required the examination of my x-rays and documentation in order to be properly answered, and waiting to receive answers until the day of the surgery was totally out of the question. How were we to make a knowledgeable decision as to what procedures can and should be performed on my breasts without the proper knowledge first?
Okay, this was my second opinion. Maybe we were wrong. Was this the only choice I had based on my x-rays and test results? Did I have to undergo surgery and tissue removal? How would I know for sure? My thoughts took me back to a statement made by the second surgeon. He stated that if we knew for sure the palpable mass which had previously been biopsied was nothing more than fibroadenoma, we wouldn't have to worry about it as they're never cancerous. A light bulb came on in my mind. I immediately telephoned the surgeon's office to request a second biopsy. Why go under the knife and have a golf ball size mass removed until we knew for sure that it wasn't fibroadenoma? My conversation was with the surgeon's nurse who was also present the day of my office visit. She informed me that the doctor had already said he wanted to remove that area and didn't believe he would change his mind, but she would check with him and call me back. She phoned back within 20 minutes stating she had spoken with the doctor. He said that I had already had one biopsy performed on that mass and that he would not perform a second one. She did inform me, however, that there was no law that stated I could not get five or six separate opinions if I so chose, knowing I would be referred to other surgeons of their peers within the same ORHS system. Our belief was that the surgeon had already made up his mind to perform surgery on me before we even walked through his door. Later, yet another doctor told us that all surgeons within the same hospital system know and periodically speak with each other regarding certain patients. He also stated that out of some sort of professional courtesy or loyalty they usually don't overstep one another's call, which helped to confirm our original belief.
