Stephanie Watson

Fear of breast cancer recurrence prompting women to choose prophylactic mastectomy

Living through the physical and emotional toll of breast cancer is so traumatic that some women can’t bear the thought of doing it again. That’s why a growing number of women who have already been diagnosed with cancer in one breast are taking the drastic measure of having both breasts removed (a procedure called prophylactic mastectomy).

Yet a University of Michigan study presented last week at the American Society of Clinical Oncology’s Quality Care Symposium showed that nearly three-quarters of women who had this procedure were actually at very low risk of developing cancer in the healthy breast. In other words, many women are unnecessarily exposing themselves to the potential risks of a double mastectomy—including pain, infection, and scarring. The researchers concluded that most of the women in their study who chose prophylactic mastectomy didn’t have a good medical reason for doing it and were “not expected to benefit in terms of disease-free survival.”

Clearly these women are making what they feel is the best decision to protect their health. The new study suggests that more and better information about breast cancer recurrence—and the risks and benefits of prophylactic mastectomy—are needed as women consider this procedure.

A growing choice

More and more women are turning to prophylactic mastectomy. A 2010 report in the journal Current Oncology Reports showed that the use of prophylactic mastectomy doubled between 1998 and 2005, and is likely still rising. Fear seems to be one of the main drivers of this increase. In the University of Michigan study, for example, 90% of women who had a preventive double mastectomy said they were “very worried” about their risk of cancer recurrence.

Other possible reasons for the rise in prophylactic mastectomy are more sensitive breast cancer screening methods, which diagnose breast cancer at earlier stages, and improved breast reconstruction techniques. High-visibility celebrities with breast cancer who have chosen to have prophylactic mastectomies are also an influence. “I have a number of people come into my office and ask about how their situation compares to that of Christina Applegate or Giuliana Rancic,” says Dr. Laura Dominici, a breast surgical oncologist at Brigham and Women’s Hospital and assistant professor of surgery at Harvard Medical School. (Allyn Rose, a 24-year-old Miss America contestant, recently announced her plans to have a prophylactic double mastectomy—not because she’s had breast cancer, but because she’s genetically at risk for the disease.)

The real risk

Many women who’ve been diagnosed with breast cancer believe they’ll be safer and spare themselves the stress of future treatment if they have both breasts removed—even if their surgeon isn’t recommending it, says Dr. Judy Garber, director of the Center for Cancer Genetics and Prevention at the Dana Farber Cancer Institute, and professor of medicine at Harvard Medical School.

The average woman diagnosed with cancer in one breast has a less than 1% risk of developing cancer in the second breast. Women are considered at high risk for a second breast cancer—and are therefore what surgeons would consider good candidates for prophylactic mastectomy—only when they test positive for the BRCA1 or BRCA2 gene or another gene that significantly increases breast cancer risk, or they have at least two close relatives (mother, sister, daughter) who have had breast or ovarian cancer.

It’s also important to keep in mind that prophylactic mastectomy won’t guarantee a cancer-free future. “I think it is very important that women understand that, although the procedure reduces risk for future new breast cancers, it has absolutely no impact on their risk of cancer recurrence,” says Dr. Dominici.

Important decision

Women considering prophylactic mastectomy often make this important decision during a very emotional period. “You hope women will take the time to make a good decision and not just have surgery at a time when their fear is the greatest,” Dr. Garber says.

A better strategy may be to delay decision making until after cancer treatment has ended, when a woman may have a different perspective or be in a better frame of mind to make a decision. “Women electing to have both breasts removed when diagnosed with a cancer in one breast need to be sure that they understand the prognosis from their current cancer, as well as their risk of a future cancer,” says Dr. Dominici.

Prophylactic mastectomy isn’t the only way to help prevent breast cancer recurrence. Other options include taking the drug tamoxifen or making lifestyle changes such as exercising and cutting back on alcohol.

“Women shouldn’t feel that having a bilateral mastectomy is going to be the only thing that’s going to save them. It isn’t. There are other ways to approach this,” Dr. Garber says.

Related Information: Living Through Breast Cancer

Comments:

  1. Susan

    Bravo Mary for weighing your options and having such great docs who didn’t try to panic you into have chemo or mastectomy for your Stage 1 dcis. There’s definitely a lot of overkill and overtreatment for dcis in particular when a lumpectomy would be sufficient. I, for one, cannot understand why any woman would opt for a “preventive” mastc on a healthy breast. The fact that this procedure has continued to rise is proof that doctors are not doing a good job of informing patients, and patients are being panicked by the pink lobby and other groups who gain from the fear factor. Let’s focus on the medical facts – the 1% of patients who have recurrence in the healthy breast – rather than making the situation look worse than it is, Let’s stop pandering to fear. This article contained very good and balanced advice for women to consider. Apparently even when surgeons and docs tell women that a double mastect. is not necessary, women still do it. That really needs to stop, maybe the Susan Komen group can help with the problem somehow? Otherwise, the panic will continue. So glad you are still doing well 10 years later Mary, that’s great!

  2. Dr. James Meschino

    Hi,
    A significant number of experimental and clinical research studies suggest that certain dietary practices and the use of specific nutritional supplements may be of value in help to prevent recurrence or progression of certain cancers.

    Thanks
    Dr. James Meschino

  3. Virginia Sparrow

    Many women today are celebrating because they survive from the breast cancer. We may prevent this by observing our body and doing regular check ups. Thank’s for sharing all of your story.

  4. Rosario

    I feel fortunate to have a Cancer Center in Milwaukee, WI.
    The team of doctors treated me like a queen.
    I did express to them the fear of having cancer in the other breast but they explained the issue in very simple words:
    We see two buildings: they are very different from each other.
    I appreciate the help I had. Chemo, surgery and radiation went well. I spent one hour dancing salsa before going to the hospital during treatment. Never felt nausea only the feeling to go to bed early to rest and be ready for the following day. Always gave thanks to the Lord for allowing me the privilege to spend one more day in this wonderful place called EARTH.

  5. Lynn

    My sister had a breast cancer and a mastectomy. Because we both have a history of childhood radiation to our tonsils, she elected a mastectomy, chemo and no radiation. Six months later she chose a second mastectomy because she hated being lopsided (she was large breasted) and because she didn’t want to worry about a tumor in the other breast and having a lot of monitoring. She has been perfectly happy with her decision. Don’t downplay the anxiety associated with follow-up. I know patients need to fully understand the odds but the docs need to fully understand the anxiety associated with living and waiting for the other shoe to drop.

    • Mariella

      Hi Lynn, I love your sister’s story, she’s so brave! I think that if I had breast cancer I would also go for elective mastectomy. After all, nowadays you can have a breast reconstruction… that’s awesome! Regards.

  6. Catherine ~ FacingCancer.ca

    It’s a huge fear to have cancer reoccur – and many women struggle with the emotional side of cancer after diagnosis. I was never offered the option of a bilateral mastectomy. . . and I’m glad to have kept the healthy breast. But it’s given me panic attacks more than once.

    I guess I’m simply saying this is an emotional time, and the choices for surgery have huge fears associated. Whoever is guiding the patient through their decision making, please do so with patience and compassion. Explaining tht bit about the 1% can’t hurt either. ~Catherine

    • Mary

      I had a lumpectomy for stage 1 in situ ductal carcinoma 10 years ago. At the same time, I underwent experimental bone marrow testing for cancer cells. The purpose was to determine if there were tests that could potentially predict the chance of re-occurrence. The lumpectomy was performed 2x (no clear margins the first time). I underwent radiation and took tamoxifen 4.5yrs. My mother had breast cancer in 1971 and survived 30+ yrs with a radical mastectomy so I understood what that option entailed. My pathology report indicated estrogen positive tubular cells (very slow growing, non-aggressive) and clear lymph nodes. What threw a whole monkey wrench into the evaluation was the bone marrow test – it was POSITIVE and showed 1 cancer cell per million. So what to do? I spoke to my oncologist, radiologist and surgeon. At the end of the day for me it was a statistical evaluation / decision. Patients need to fully understand the odds and what’s contributing to them. I decided to NOT undergo chemo, and NOT have a mastectomy. Two out of three doctors felt that the single cancer cell could be treated as an outlier, as we all have normally occurring mutated cells in our body. Over 10 years later I am cancer free. I also had BRCA 1/2 testing performed because I was very concerned about ovarian cancer and tested negative. The chances of cancer re-occurring were said to be 4%. It did not make sense (to me) to have chemo, or mastectomy for an additional 1 to 2 percentage points of certainty. I may have cancer again, but it won’t be due to the 2001 occurrence. As Catherine mentioned above, helping patients understand the probabilities inherent in the treatments would be helpful. I’m happy to have preserved my breast.

  7. Tom Macek

    very nice comment about pain management Thanks.