In the Clinic

On Cancer: Anxiety May Be Fueling More-Extensive Surgeries in Breast Cancer Patients

Pictured: Mary Jane Massie & Tari King Psychiatrist Mary Jane Massie (left) and breast surgeon Tari King

It used to be that doctors made treatment decisions on behalf of patients, often leaving them feeling helpless in determining their own care. Now in certain situations that sense of helplessness may be replaced by confusion, as patients are asked to make their own choices about a course of treatment. Emotional factors can play a big role in those decisions — and may sometimes outweigh scientific evidence.

Treatment for early-stage breast cancer is a case in point. Since the late 1970s, women diagnosed with early-stage tumors have had a choice of which course to pursue: removal of the tumor and a small portion of the surrounding breast tissue (lumpectomy) followed by radiation therapy, or removal of the entire breast (mastectomy).

Women concerned about developing a second cancer may also elect to have their other, healthy breast removed, a procedure called contralateral prophylactic mastectomy (CPM). Increasingly, many women are choosing this more-extensive option, despite its greater costs and evidence that it does not provide a survival benefit.

Studies Find CPM Rates Are Increasing

In 2007, the first study to look at data on this topic found that rates of CPM had gone up 150 percent between 1998 and 2005. Several subsequent studies have shown the rates continuing to increase. A 2011 study from Memorial Sloan Kettering breast surgeon Tari King found that only 13 percent of patients who chose CPM had a known risk factor for an increased risk of cancer in the other breast. (Those risk factors include mutations in one of the BRCA genes or a history of radiation therapy to the chest wall.)

“We found that women who have a family history of breast cancer were more likely to choose this option, even if they did not have a BRCA mutation,” Dr. King says. “We also found that women who are younger tend to choose CPM more frequently.”

“We know from other studies that most women significantly overestimate their risk of developing a second cancer, so it is very important that patients understand all the potential risks and benefits of this approach,” she says. “Removing the other breast increases the length of the operation and the risk of complications. And some women may be dissatisfied with the outcome of their reconstructive surgery, either on one side or both sides.”

Dr. King estimates that today, the rate at which women with cancer in one breast choose CPM is 35 to 40 percent.

A Changing Landscape

Dr. King believes there are several reasons for the increase. “One thing we found in our study is that women who had a breast MRI as part of their preoperative evaluation were three times more likely to choose CPM,” she says. MRIs may detect additional areas of breast cancer that are missed by mammography, but the rate of false positives is quite high. “If the MRI finds something that looks suspicious, many women say, ‘I would rather just have a double mastectomy than go through the process of having biopsies on my other breast,’” she notes.

“Another factor is the advances in breast reconstruction and the availability of immediate breast reconstruction,” she says. “There are certainly improved results for these procedures today compared to a decade ago.”

Another potential reason for the increase is “more public conversation about breast cancer and the willingness of people to talk about the choices they’ve made. Increasingly, that choice is CPM,” Dr. King says. “Whether it’s a famous person or someone who lives down the street from you, hearing about other people’s treatment can have an influence on your choices, potentially creating a sense of acceptance that more-extensive surgery is preferable or necessary.”

“We treat so many truly thoughtful, educated women,” adds Mary Jane Massie, a Memorial Sloan Kettering psychiatrist who specializes in treating women with breast cancer. “Every woman who comes here has heard a story about a woman who was told by her doctor that that she didn’t need a double mastectomy and then later had cancer in both breasts.”

“The anxiety and fear that patients feel in these situations is very real,” Dr. Massie says.

Empowering Women to Make Choices

“There can sometimes be a disconnect between the information that women are receiving from friends and family and the information they receive from their physicians,” Dr. King says. “The strongest point we can make to empower women to consider less-extensive surgery is that there is no survival advantage to CPM, and that removing a healthy breast is not better treatment.”

“It’s also important to recognize that mastectomy decreases the risk of a contralateral breast cancer by 95 to 97 percent. There is no 100 percent guarantee,” she says.

“Women need to feel supported in their choices whatever they decide to do,” Dr. Massie says. “It’s our job as doctors to teach patients, but it’s not always as simple as just showing them statistics.”

Current data show that most women with breast cancer have a very small risk of developing cancer in their other breast; only about 3 to 5 percent of those women will develop a cancer in their healthy breast over the next ten years. And Dr. King points out that this risk has actually decreased over the past decade thanks to advances in hormone therapy and other systemic therapies that patients often receive as treatment for their first cancer.

“We don’t want women to choose unnecessary surgery simply because of anxiety,” Dr. Massie concludes. “No two women are the same, and every woman needs to have a conversation with her doctor about what the risks and benefits are for her own situation.”

Comments

This is one of many articles saying that women are unnecessarily getting mastectomies. The focus should be on the individual woman's case and that every women should have a talk with her doctor about her particular circumstances. Because there are valid reasons to choose mastectomy. There are other reasons a woman may be considered high risk (not merely because she is BRCA+) such as LCIS, dense breasts (whether or not they cause cancer, they certainly make it harder to detect) or a strong family history. It is not surprising to read that younger women who have undergone MRIs are more likely to choose double mastectomies. Frequent biopsies are a cause of major anxiety (I've read they cause more anxiety than an actual cancer diagnosis, in Psychology Today). Taking time for the tests...waiting for the results...keeping the testing from your young children until you have an actual diagnosis. All very difficult. But a cancer survivor is on "high surveillance" so there is the great possibility of frequent and unnecessary biopsies. Interesting that unnecessary biopsies is one of the main reasons used by detractors of mammograms to support their anti-mammogram argument. Yet, when it comes to unnecessary biopsies on a breast cancer survivor who is on "high surveillance", this issue does not seem to matter. Never mind the anxiety caused by waiting for results. Young women with young families are busy and biopsies cause extra doctor appointments. As well, it is difficult navigating the biopsy roller coaster while trying to keep the information from your children until you know whether or not there is something to tell them -- this actually caused me the most anxiety. I weighed the pros and cons carefully. I did not allow my fears rule my decision making. I made my choice because quality of life was paramount. And, by the way, after the surgery, the pathology showed for the first time that I had LCIS, which gave me an increased risk of getting cancer in either breast.

I am struggling with this decision right now. I am 39 years old and I have 2 young children. I am currently under going chemo for IBC in my left breast and I will need a modified radical mastectomy on that side. I have no family history and I am BRCA negative. So I basically had a minimal chance of getting cancer to begin with. I've been told that I now have a 20% chance of developing breast cancer, in my life time, on the other side. I am in the medical field and I base all my patient counseling on statistics, research and risk:benefits. But now that I am a patient that is a lot harder to compute. I understand statistics and I know that this next statement is a little silly but 20% seems like a guarantee after not having much risk to begin with. The other thought that I have is what if I have some other risk factor that is unknown yet. Again something I would never consider with my patients to make decisions.

In 2007 I had a right mastectomy..stage one..triple negative..BRCA 2 no mutation..I am 50 now and even though I didn't need to have a mastectomy, I chose it for my own mental well being. Now, I question as to why I didn't remove both breasts. Recurrence is always on my mind and not only that, but I didn't chose reconstruction because everything happened so fast that I felt my choice of wearing a prosthesis would be fine. It has been but now I am tired of it. I am not a cosmetic person by no means and I was worried that reconstruction would cause an infection, that my body would reject it and I didn't go forward with it. I feel now I am ready but I have questions that need to be answered. First and foremost for me, it is the worry. I am tired of looking at the one breast and wondering when and if it will cause be to experience breast cancer again and I know that removing it doesn't mean 100% safety against it but for my own mental state, it would make a difference. It is a big decision to have to make at that moment but go with your gut feeling and make sure you think of the future and how you might feel down the road. It's an emotional journey that will be with you for the rest of your life whether recurrence takes place or not.

Mary Ellen,

Thanks for sharing your story and perspective.

"'Women need to feel supported in their choices whatever they decide to do,” Dr. Massie says. “It’s our job as doctors to teach patients, but it’s not always as simple as just showing them statistics.'"
I agree that it's not as simple as showing a woman statistics. Most people don't have a good grasp of what a statistic really means, anyways. However, I don't think its the physicians job to "support" a patient's choice. If a physician thinks that extra surgery is unnecessary, I don't think s/he needs to be disingenuous about his or her feelings. The physician can follow through with the patient's decision, but I don't think that means he or she has to be OK with it.

Thanks so much for sharing your thoughts!

Having been diagnosed with Stage 0 BC in 2009, I wanted a Bilateral Mastectomy. I let statistics and my doctors opinion convince me to have a lumpectony and radiation. In 2013 I was diagnosed with BC once again in my other breast. This time it was Stage 3. It was never detected on a mammogram or by physical exam. I underwent a Bilateral Mastectomy and immediate reconstruction. I needed to have a Latissimus reconstruction on my right breast because the skin had been damaged by the Radiation after the lumpectomy. Chemo and Radiation were needed after the latest surgery because of the size of the tumor and the number of nodes involved.If i have learned nothing else from this experience, you must make your own decision, listen to everything your doctor has to say, but ultimately it is you who have to live with the decision made. I have regrets that I didn't listen to my gut the first time I was diagnosed. Don't have regrets, do what you feel is the right choice for you.

Meg, thank you for sharing your experience and perspective.

I'm dealing with this decision now as well - as a 27 year old newlywed who was planning on having children and breast feeding in the next few years I'm having a really hard time figuring out what to do. They don't know what stage I'm in yet but they do know I 100% need to have a right breast mastectomy. The left breast shows no abnormal activity on the MRI, mammogram or sonogram - but they did say it was difficult to read the MRI with young hormonal breasts (they called them 'busy breasts!') and the tumor that we know is in my right breast did not show up on the mammogram, which makes me wary of what we can really see in advance anyway. There's so much information out there...and I don't want unnecessary surgery, and it IS a major plus that IF I'm even able to have kids after chemo I could breast feed with the left breast but I'm afraid the worry of cancer return will eat at me. I'm not a worrywort by nature, but then I got breast cancer at 27 so...any insight or advice into my situation/decision is much appreciated.

Marie, unfortunately, we cannot give medical advice to individuals on our blog. If you'd like to make an appointment with one of our doctors, you can call 800-525-2225 or go to http://www.mskcc.org/cancer-care/appointment to learn more.

Yes, it is an individual situation and decision. For me, I had a significant family history but was BRCA(-). Because of my history, I started my mammograms at age 27 and had them annually with sonograms every year but the years I was pregnant/breast feeding. I was diagnosed at age 42 as a Stage III because the lump I had never showed up on either the mammogram/sonogram. Yes, these tests are not 100% by any means, and the disappointment that I felt when I had been so vigilant cannot be expressed here. This was a major contributing factor to my bilateral mastectomies. As an aside, there was atypical hyperplasia all over the non-cancerous breast that showed up "clean" on the preop surveillance.
LOL!

Kathleen, thank you for sharing your experiences.

I find this often repeated point (always based on a study) about women getting unnecessary bilateral mastectomies somewhat patronizing, though I'm sure that's not intentional. It’s this idea that women are “emotional,” and that we are making our choice according to emotion. And if only we’d listen to the science! Then we’d all just get lumpectomies!! Plus radiation!

I felt my choice to have a CPM was rational. I full well understood, as my surgeon repeated, that CPM would not affect my “overall survival” chances from the breast cancer with which I was diagnosed and seeking treatment. But certainly CPM reduces local recurrence risk--in the same breast, or contralateral breast. Why is wanting to reduce that risk anything less than a wholly rational choice? I think the surgeon said the risk was 10% higher than average woman’s risk, but I think that was a generic bc statistic, and I’m not sure if it was a lifetime statistic (I was 45 at diagnosis) or just over the next 10 yrs…I also don’t know that the statistics were based on premenopausal women with underlying high risk conditions, like me. But even for argument's sake if this generic / breast cancer population recurrence risk of 10% was actually my personal risk recurrence-what’s wrong with wanting to reduce that to 1 or 2% with mastectomy? Isn’t that what so much post-adjuvant treatment aims to do for stage 1 patients?

I was someone who underwent MRI; I elected CPM. In my case the MRI detected the breast cancer – the regular mammograms missed it. MRis increasingly find breast cancers missed by mammograms. Perhaps this experience is another contributing factor as to why women who have had MRIs tend to choose CPMs in greater proportion?

The low cost screening option is unreliable (mammograms, Dr. Norton stated in one talk I attended, are ‘at best’ 80% - 85% accurate). If I didn't have a CPM, I’d have increased monitoring with MRIs in addition to mammograms -- along with the risks, costs, and to think of the unnecessary biopsies and additional call backs, time, energy, yes, expense, because of the higher surveillance like Helene, the first poster, said. MRIs aren’t cheap, I’d need them yearly for decades, perhaps. Or maybe my insurance wouldn’t allow them at some point. Who can say what one will be able to afford in the future, or what health insurance I’ll have, and what it will allow? I have no regrets about my course of action.

PS And I do think surgeons should support a patient’s choice. Of course, the surgeon doesn’t have to and shouldn’t just follow a patient’s whims. Recommend them elsewhere if you can't support them. If my surgeon didn’t support my choice, I’d want to find another surgeon. Because I’m not a hysterical woman, reacting emotionally and demanding unnecessary surgery. I have entirely valid rational reasons based on facts and my individual experience / life which inform my decision. General stats inform, but they are one part of it. Thank you to Dr. Massie for the respect and understanding you appear to give women who seek treatment at Sloan and make difficult choices. I hope in the future with ACA others continue to have such choices- it expands, not contracts as some ‘cost saver’.

Karen, thank you for sharing your experience and contributing to the conversation.

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