When Plans Change: An Unexpected Radical Mastectomy
Sometimes plans change. I have been following the recent news about a study from Duke University that a lumpectomy with radiation might actually be more effective than a mastectomy in preventing breast cancer recurrence. The previous evidence suggested the two procedures were about the same, so women have been making their choice between these two procedures based mainly on personal preference for quite a few years now.
PJ Hamel has done a fine job of explaining the study and its possible limitations in her sharepost “First Don’t Panic, Do You Really Need a Mastectomy?” so I won’t review the details. Instead I want to discuss the reasons it is important to head into that all important talk with your surgeon with an open mind. The study snippets you see on television and the more in-depth articles you read at HealthCentral are about big groups of women. You may or may not fit the profile of the people in the study.
Better imaging techniques, the use of markers at the time of biopsy, and improved precision of radiation all make lumpectomy a wonderful breast-conserving procedure that many women want to try. But sometimes it doesn’t work out. The size of the tumor in relation to the amount of breast tissue may make a lumpectomy impractical. Sometimes the surgeon can’t get clean margins (a border of non-cancerous tissue around the tumor), and mastectomy becomes the best option.
One of the first things my surgeon said to me after my biopsy revealed that I had inflammatory breast cancer (IBC) was, “I’m sorry, but with this kind of cancer, breast-conserving surgery isn’t an option.” It was one of those self-evident things that didn’t really need a statement from my point of view. I didn’t know much about breast surgery, but I knew that to have a lumpectomy, you needed to have a lump. My mammograms and ultrasounds didn’t show any lumps. Instead, the cancer was diffused through the skin of my breast, so clearly the whole breast had to go.
Because IBC is already in the lymphatic system, it is treated with chemotherapy before surgery. KIlling any cancer cells that may have wandered to the lungs or liver is more important than removing the breast first.
I had plenty of time to read about mastectomies. I read about the barbaric old days when the dreaded Halstead radical mastectomy butchered women. Quite a few of the cancer activists I was reading weren’t happy with the number of surgeons who were still doing modified radical mastectomies instead of encouraging their patients to choose lumpectomy plus radiation, which by this time had been shown to be as effective as mastectomy. I began to understand why my doctor started by stating that I was not a candidate for breast conservation surgery. He probably had many women who were prejudiced against the mastectomy choice by the same articles I was reading.
When I talked to my surgeon about this, he assured me that he would be doing a modified radical mastectomy. I would lose my breast and most of the lymph nodes under my arm, but he would leave the muscles on the chest wall. Most of what I was reading about crippling breast surgery wouldn’t apply to me.
When I woke up from surgery, the pain and scar weren’t as bad as I had expected. But I could tell from their faces that both my surgeon and oncologist were shaken. It turned out that of the 24 lymph nodes the surgeon removed, 16 were positive for cancer. This was a major surprise because they hadn’t appeared swollen or diseased from outward physical examination. I also learned two tumors rested on my chest wall that had never shown up on the mammogram. Whether they had been there all along or had been growing from the time of my last mammogram in February until my surgery at the end of June was a mystery. However, I gathered that they had probably been there all along out of sight of the mammogram equipment.
My cancer was much more aggressive than anyone expected, and in the crisis of dealing with this problem, I didn’t ask many questions about my surgery itself. For the next several years when asked about my treatment, I told people I had a modified radical mastectomy. I was starting to realize that my surgery was more extensive than some other women’s. Finding clothes that didn’t show the concave area beneath my collarbone was a chore that other breast cancer survivors didn’t seem to have.
Still the words “barbaric, crippling” were so firmly coupled in my mind with the term “radical mastectomy” that it was more than seven years after my surgery before I acknowledged to myself that my surgeon did a radical mastectomy. I had finally gone to see a plastic surgeon about possible reconstruction. Before he examined me, he was pushing for implant reconstruction as the easiest and safest procedure. I explained that my original surgeon had told me I wasn’t a candidate for implants. The plastic surgeon clearly thought my cancer surgeon didn’t know what he was talking about. “We just slip the implant under the muscle,” he was explaining while I was thinking, “What muscle?”
When the plastic surgeon actually looked about my chest, I saw flash of surprise, horror and pity that he quickly got under control. He decided that implants would not work, and we talked about the risks and benefits of some other reconstruction techniques. I waited until I got out to the car before I started crying--not so much about the fact that reconstruction wasn’t a good option for me as about my realization that I had a radical mastectomy.
I was angry with my original surgeon for not telling me. My husband was surprised. “But he explained after surgery that he had to take everything to get clean margins because of those tumors on the chest wall,” he said. “Don’t you remember?”
Yes, that did sound familiar. Whether my surgeon used the term “radical” to describe my surgery or whether he expected that an informed patient like me would understand that “take everything” was synonymous with “radical mastectomy” I don’t know. I had moved a thousand miles away by the time I was putting the pieces together.
When I was looking up information about the current use of radical mastectomies for this piece, I could find very little information. Most of it described the procedure as “rarely done.” The exception--cases where the cancerous tumors are embedded in the muscles under the breast tissue. My surgeon did the right thing, and I am alive today.
No matter how carefully you and your surgeon plan, surprises can happen. That is why it is so important to find a surgeon with a good reputation, a surgeon you can trust to make decisions at the last minute while you are unconscious. The studies making the headlines give you information to take to your doctor. However, in the end your doctor knows your medical history and whether you fit the criteria used in the study. Ask plenty of questions. Tell your doctor your preferences. Then be flexible if plans need to change.