CancerGuide: Inspirational Patient Stories
I consider myself to be a survivor. Not a cancer survivor - my growth was benign, thank God. But a survivor of the callousness and close-mindedness of the medical practitioners I met along my journey. Rather than acquiesce and submit to a procedure I viewed as barbaric, I listened to my heart and challenged the establishment until I was able to find a team of physicians who were willing to listen to me...work with me...treat me as a human being, not just a source of revenue. This is my story...
I live in a small town in Southern California. In August of 2002, an annual mammogram revealed a small, deep mass in my right breast. An ultrasound showed that the mass was solid. My primary care physician arranged for a confirmation ultrasound and possible lumpectomy in a larger town nearby. This was the first time my heart told me to slow down, take charge of my own health care. Just because my physician referred me to one of her colleagues did not mean that her referral was the best nearby option. I did some research and was appalled to learn that this new physician only performed 35 lumpectomies a year. The town I live in is only 2.5 hours from Los Angeles, so I broadened my search and found a well-known breast center in Los Angeles that was in my network, so I took control of my health care and changed the appointment. I met with the head of the Oncology Department and was told that the mass needed to be removed. She called the procedure a needle/wire localization excisional biopsy. For those of you who are not familiar with the procedure, let me explain it...
A radiologist zeroes in on the mass using either a mammography or an ultrasound. After locating the mass, they use a local anesthetic - lidocaine - to numb the breast. They then insert a 4-6 inch needle in your breast, stopping at the mass. The needle is hollow and has a wire in it. They leave the wire in your breast so the surgeon can use it as a guide-wire in locating the mass for removal. This is all done while you're awake. Then you are transported from radiology to the surgery center with either one or two wires sticking out of your breast, where you wait until your scheduled surgery.
This procedure sounded barbaric to me. I asked the surgeon if I would be sedated for the procedure, and her response was: "We don't sedate in radiology! It is a simple, relatively pain-free procedure, don't worry about it. The mass needs to come out soon. Let's schedule this for ten days from today." I was in shock. Had she just told me that she thought I had cancer in a very roundabout way? I scheduled the surgery and left.
When I got home, I couldn't get the visual of this upcoming procedure out of my mind, and the thought of being awake for it terrified me. So I got on the phone with the head of the radiology department at this facility and asked if I could be sedated for the procedure. He explained to me that if the mass could only be identified using a mammogram, sedation was out of the question because I would have to sit or stand while the radiologist positioned my breast in the mammography equipment, and if I was sedated that was not possible. I breathed a sigh of relief and told him that my mass was identifiable using an ultrasound - thinking that he would then accommodate my request. To my shock, I was told that this accommodation was not possible. The dialogue went on for a few days, and to be frank, I got the feeling that it was internal politics or a refusal to think beyond current practices that was driving their insistence that the procedure be handled the way they had described.
But I was not okay with that. To me, my request seemed reasonable. My mass could be located using an ultrasound. I didn't have to be awake for the procedure - we have the technology to accommodate this simple request. I got busy researching...which facilities had the level of experience with this procedure that met my comfort level and were in my network. Thankfully, there were many facilities in California that had lots of experience with this procedure. So I got on the phone, searching for one that would accommodate my request. The problem I ran into is that this request was not common. I would be a rich woman if I had a dollar for every time I heard: "This procedure is not that painful - just do it." How dismissive! It wasn't the pain that concerned me, it was the emotional trauma I feared I would suffer following the procedure - having been forced to be awake and seeing them impale my breast! They weren't listening. Or maybe more accurately, all they heard was my panic and wrote me off as an hysterical, irrational woman. Maybe my concerns were unfounded. That's irrelevant. My request was not out of line - we have the technology. Why were they so resistant to accommodating my request?
What I learned is that in most of these facilities, radiology and surgery are in different and often remote locations. Accommodating my request was inconvenient for them, and it was easier to dismiss me as a lunatic than to consider thinking outside the box... asking themselves: "How can we do this? If offered as an option, how many women would prefer this approach? What's in the patient's best interest?"
During the course of my research, I found a facility in Wisconsin that is set up as a true full-service breast center - Health South Oak Leaf Surgery Center, Eau Claire, WI. By "true" I mean that they had combined radiology, anesthesiology and surgery in one facility. Provided the mass could be located using ultrasound, they would be able to accommodate my request without worrying about inconveniencing any of the participating specialties. What a novel concept. I breathed a sigh of relief. At the very least, I could travel to Wisconsin and have the procedure done the way I wanted it to be done. That knowledge gave me a sense of calm. The only thing that was bothering me was the tone of urgency in the oncologist's voice when she said the mass must come out soon.
To this point of my story, one week had passed. I called head of the radiology at the renowned breast center in Los Angeles. Upon my request, he reviewed my ultrasound and mammogram slides. The next day, he called to tell me that although he felt my lump should be removed and biopsied, he did not believe it was as urgent as I had been led to believe. In fact, he had called the surgeon and challenged her urgency. Are you ready for this? Her urgency was inspired not by my condition, but by her protocol. That's right - I was nothing more than a source of revenue for her - get them in, cut them, and send them on their way. That's all I needed to hear - I cancelled my procedure and continued my search for a California facility that would accommodate my request. The head of radiology encouraged me to stay true to myself - keep looking until I found a facility that would accommodate my needs. He was very compassionate and sincere.
I called over forty facilities up and down the coast of California, and found only three that would accommodate my request. For those women who would like this as an option, those facilities are:
Now some may say that my request was unusual, after all, sedation does have risks. But the fact of the matter is sedation is used for the lumpectomy, so why not for the needle/wire localization as well? To the many physicians, nurses, and radiologists who dismissed me saying that this is not a painful procedure, I challenge you to ask your patients following the procedure: "How could we have made this a more comfortable experience for you?" During the course of my journey, I spoke with many women who have had this procedure. Some agreed with the rhetoric spewed by the many physicians I spoke with, however most said that the lidocaine did not numb them fully and it was a painful procedure. When I asked them if sedation had been offered as an option to them, all said no. When I asked them if they had been given that option would they have chosen sedation for the needle wire localization procedure, more than half said yes.
Sedation for the needle wire localization is not an option for all women. For those whose mass can be detected by an ultrasound, doesn't it make sense to give them the option? That's all I'm asking. Let's remind our medical communities that we are not lambs who should follow them blindly to the slaughter - we are their customers. Just because you've always done it that way doesn't mean that you've been doing it right all along, does it? For the women who are facing the procedure - insist that the facilities meet your needs, challenge them to think outside the box. Caveat Emptor - Buyer Beware.
My procedure was performed on October 22, 2003 at the Henry Mayo Newhall Memorial Hospital. My surgeon was Dr. Gregory M. Senofsky. He coordinated the efforts of the radiologist - Dr. Daniel Kirsch, and the anesthesiologist - Dr. John V. Watkins. They brought a portable ultrasound to the surgery center, sedated me, performed the needle/wire localization procedure and the lumpectomy. My mass was benign.
2012 note: For more information on sedation for needle wire localization procedure, see Jane's story.
This CancerGuide Page By Cathy. © Cathy
Page Created: February 22, 2004, Last Updated: January 15, 2008