Never Stop Asking Questions
by Nancy M. Fee, RegalLady99@aol.com
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.
Well, as you know I wouldn't have a story to tell if we had stopped there. My husband was so upset by the lack of logical answers we'd received thus far, and the unwillingness and superior attitudes we'd encountered, he made more phone calls. He was given a name of a radiologist at ORHS who would speak with us 'off the record.' In meeting with him at ORHS, he answered most all our questions and to our relief, we found out we weren't crazy after all. After reviewing my x-rays, he told us the less invasive procedures that we had been asking about could indeed be performed on me. He said he himself could perform the procedures but his hands were tied, as the radiologist who had refused me these same procedures was his superior. He stated my x-rays had been passed around the department and no one there would touch my case. He mentioned that a recent lawsuit lost by one of his colleagues in the amount of $5.4 million might be why the radiology staff at ORHS is not willing to perform these procedures. He also stated that the technology was available there but not readily used and suggested I go outside ORHS if I wanted these less invasive procedures performed.
Now we were faced with a whole new set of questions that needed answered. What to do now? Was the radiologist correct? Could I safely have the procedures done and if so, by whom? Would our insurance pay for these procedures if performed at another facility? Our insurance coverage was good only at ORHS. Again my husband was on the phone, this time with a customer service representative from our insurance company explaining our situation. He was told that if I changed my Primary Care Physician (PCP) to one who belongs to The Florida Hospital System (the other major hospital in greater Orlando) that I would be covered at Florida Hospital. He also obtained another surgeon's name from within ORHS. His office was located at a Woman's Cancer Center here in Orlando and has specialized in breast cancer for more than 20 years. Although I didn't give much hope in seeing yet another surgeon within the same system, it was our belief that if by some miracle he agreed to these less invasive biopsies, I wouldn't have to change my PCP. I very much liked my existing physician and gynecologist, which I had been with for nearly ten years. We felt it was worth a try.
We have a neighbor who works as an ultrasound technician at Florida Hospital. She gave us the name of a radiologist whom she believed to be excellent in her field and who was willing to meet with us anytime. We soon had two more appointments scheduled. The first appointment was to meet with the cancer specialist. The second appointment was with the radiologist at Florida Hospital the following day. We would pay money out-of-pocket for the consultation at Florida Hospital. We believed a consultation with an outside source would truly be worth it. We needed to know what someone outside the ORHS system had to say and then, and only then, would we make our decision. The cancer specialist was truly a caring individual. He spent two full hours with us reviewing my case, asking us questions about what had happened prior our meeting, examining my x-rays, giving me a breast exam and just plain talking with us. His first diagnosis, however, was open surgery. But after asking him our usual set of questions regarding alternative procedures, he too agreed that the stereotactic procedure and percutaneous core needle biopsy would be feasible. He said he had recommended these procedures for other patients on several previous occasions. He was visibly surprised to hear that the radiologist in question had declined to meet with us and asked if he could keep my x-rays as he wanted to consult with her in person that afternoon. As my appointment at Florida Hospital was the following morning, I could not leave my x-rays with him. He then proceeded to phone her from his office with us being present. After only a two minute conversation, she informed the doctor these procedures could not be performed on me as the microcalcifications may be too small for the stereotactic procedure and deemed that the mass in my left breast was too close to my breast cavity. All this she stated without the use of my x -rays. Now for the first time we heard a reason as to why these procedures may not work in my case. The doctor also mentioned the recent lawsuit and speculated that it might be one reason why ORHS was taking the more conservative and most traditional method. This, however, was not what I wanted.
At 8:00am the next morning we met with the Florida Hospital radiologist. After only a five-minute wait she met with us in an empty examination room. She spent a considerable amount of time with us reviewing my x-rays, both years 2000 and 1999, (which we believe she was the only doctor who reviewed my 1999 films), discussed my case, answered our questions and gave me a breast exam. She was aware we had seen several doctors prior this appointment. When she asked us about their findings, we told her we would discuss their recommendations in detail with her only after we had heard what she had to say. We apologized for our response to her question but so wanted to hear her opinion first as our recent history with doctors had been so overwhelming and our stress levels were at an all time high. She was very gracious and totally understood our hesitation.
She was wonderful! She conducted herself professionally answering all our questions directly yet she was very charming with a warm bedside manner that put us very much at ease. The first thing she recommended to us was a stereotactic Mammotome biopsy for my microcalcifications. She expressed more concern with this area than with the left breast mass as the microcalcifications had been present on my 1999 mammogram x-rays, small but present. This was the first time we had heard this. She continued to explain that if we chose the stereotactic biopsy and if there should be logistical difficulty during the procedure (that the calcifications would be too small to be seen on the monitor), they would automatically remove the calcifications and a small amount of tissue surrounding that area. We fully understood, and in her words, "why not give it a try first." If we chose! Those were the three most beautiful sounding words to our ears. We were actually being given choices, options . . . hallelujah. She then told us she could do an image guided core biopsy of my left mass, or I had the option of having it surgically removed. There was never any mention that the mass was too close to the breast cavity.
The next was my palpable mass that she could feel during my breast exam. Again, her first response was that it was probably nothing. That women who normally have a lot of fibrous tissue within their breasts can commonly get fibroadenomas as they get older. She indicated that my previous biopsy result of that area had verified that it was normal breast tissue. We were still very leery regarding that area based on the concerns of the previous doctors and asked if there was anything other than surgery that could be done to verify for sure that this was truly fibroadenoma. She described two methods from which we could choose, a Miraluma test or a MRI to determine if the palpable mass was cancerous, neither method required cutting. Don't you just love that word, choices?
So that we would have something to take home with us that day, she personally wrote down the different choices she had discussed with us knowing they would help with our decision making process. She said she would be happy to perform the biopsies herself if that was what we decided.
Although I still faced the biopsies, we were so pleased by what we had heard. I had available to me their advanced machines, technology and trained, caring staff. What a breath of fresh air. For the first time in this long process, we now had choices as to what I wanted done for my own body. We discussed a lot of things on the way home, but the decision as to where I wanted the procedures done was a no-brainer. I knew I wanted the Florida Hospital radiologist and professionally trained staff to perform the biopsies, first to determine whether or not I had cancer and then, if any malignancies were detected, I would proceed accordingly.
Now to get the ball rolling, we began making the necessary phone calls needed. My husband called our insurance provider and gave them the name of the new PCP I had chosen. I then called to schedule an appointment with the new doctor for consultation and a referral to a recommended surgeon. I then scheduled an appointment with the surgeon to review my films and reports. He had already spoken with the radiologist at Florida Hospital and was in agreement with her findings and recommendations. We also discussed with him the difference between the Miraluma test and a MRI. Again the choice became a no-brainer as he told us that the MRI is 100% accurate. I was then given the referrals I needed to have the biopsies of my choice performed. It was 58 long days from my mammogram and ultrasound to my first scheduled biopsy procedure. I cannot convey to you in words the mental toll this played on myself and my family throughout this time.
My first procedure was the MRI. My husband was sitting by my side the whole time talking and laughing with me. He helped to pass the time and we were soon on our way home. The entire procedure was painless, no cuts or punctures and lasted less than an hour.
The stereotactic procedure and needle-core biopsy, although performed in different rooms, were performed on the same day. Both procedures, including the follow-up discussion with the radiologist, were over within four hours. Each procedure required only a one-quarter inch cut for the insertion of the needle. I had no pain, no stitches, very little bleeding and minimal bruising which dissipated within days not weeks. Two days later we had the results. I'm blessed to say our story has a happy ending. All three masses were benign and I have both breasts fully intact; no surgery required.
It's now been six months and I have just completed my follow-up mammogram and ultrasound. I was given a clean bill of health and have absolutely no scaring on either breast. I don't go back again until next year when I will resume my annual mammograms.
In conclusion, I can't say enough wonderful things about our Prudential HealthCare HMO Provider. From the doctors who took a personal interest in my health, even though it might mean loosing a loyal patient, to the referral secretary who kept those faxes coming, we owe a huge thanks. Also to the Prudential Insurance Customer Service Representatives, who on a day-by-day basis faxed us the paper work we needed in order to make the necessary changes. They made the process painless, moving so quickly on all our requests that we often received the faxes that same day. And to the caring, professional and knowledgeable staff at Florida Hospital, we owe our sincere gratitude for letting us take an active role in what could have been a life-threatening outcome. They acted professionally before, during and following the procedures, explaining everything they were doing or about to do every step of the way. Both my husband and I could view monitor screens and x-rays with full explanation as to what we were seeing. Their concern for us was demonstrated many times over.
I'm going to leave you with but a few of the numerous websites available today regarding breast cancer and procedures. Some websites not only give full explanations but also show actual mammography pictures. Women's health websites are numerous. Read as much as you can on a particular subject before you journey to any operating table. My husband and I would like you to know that any health related information you need (for men and women alike), whatever your health concern may be, is readily available to you if you just look for it, either through the Internet or your Public Library.
PLEASE TAKE THE TIME TO KNOW WHAT'S AVAILABLE TO YOU. DO YOUR HOMEWORK AND TAKE CHARGE OF YOUR OWN BODY. REMEMBER, SURGEONS GET PAID TO PERFORM SURGERY. ASK QUESTIONS, AND IF YOU'RE NOT COMFORTABLE WITH WHAT YOU HEAR, KEEP SEARCHING UNTIL YOUR QUESTIONS HAVE BEEN LOGICALLY ANSWERED AND YOU FEEL COMFORTABLE WITH YOUR TREATMENT. GOD BLESS AND NEVER STOP ASKING QUESTIONS.
Some of website references we used were:
http://www3.healthgate.com/, http://www.imaginis.com/, http://medscape.com
Editor's note: The following story was submitted by an Imaginis.com user without solicitation from Imaginis. As such, Imaginis does not endorse or take responsibility for the medical accuracy or opinions expressed by the author. The author, physicians, hospitals and insurance providers mentioned in the article are not affiliated in any way with Imaginis.
Updated: July 2006
