Once upon a time – back in Betty Ford days and earlier – a breast cancer diagnosis had one surgical option: mastectomy, the complete removal of the affected breast. There was no choice.
However longevity averages are not improved by mastectomy, single or double, for all but a small percentage of women. Today, breast conserving surgery, a lumpectomy, is usually recommended.
Writing in Critical Decisions, How You and Your Doctor Can Make the Right Medical Choices Together, Peter Ubel, MD, sets the historical stage with the most famous breast cancer patient of the 1970s, Betty Ford. Dr. William Fouty, chair of surgery at the National Naval Medical Center in Bethesda, MD, was her surgeon and had met with the President and First Lady before conducting the biopsy.
Shortly after Betty Ford’s surgery, a National Cancer Institute trial would show that the radical mastectomy did not protect the patient against cancer recurrence any better than the modified radical mastectomy, Ubel notes.
Eventually, the same would be said of the lumpectomy versus today’s mastectomy, which is more refined than the procedure of the 1970s. Cancer recurrence rate in the affected breast is 3% within the first five years; the annual risk of developing cancer in the other breast is less than 1%.
Nevertheless, some women choose mastectomy; sometimes mastectomy is recommended.
Who gets a mastectomy?
A unilateral (affected breast only) mastectomy might be your surgeon’s recommendation if your tumor is larger than 5cm; if the tumor is large relative to the breast tissue; or if there is more than one tumor.
A unilateral mastectomy might be your surgeon’s recommendation after a lumpectomy, if the initial surgery did not remove all of the cancer.
If your genetic profile reflects a high risk of developing a second cancer (recurrence), mastectomy may be recommended.
If you have had breast cancer and have a recurrence, the breast can no longer safely tolerate radiation therapy. In this case, mastectomy is the only surgical option.
In 2007 the American Society of Surgical Oncology suggested bilateral prophylactic (risk-reducing) mastectomy was an option in these high-risk patients:
- BRCA mutations or other genetic susceptibility genes;
- breast cancer in multiple first-degree relatives and/or multiple successive generations of family members with breast and/or ovarian cancer;
- histologic risk factors such as atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH) or lobular carcinoma in situ (LCIS); or
- a clinically dense breast that may make surveillance difficult.
My high risk two biopsies (LCIS and ADH) were taken in 2011, and I had dense breast tissue. But by then, mastectomy was no longer a recommended topic of discussion between doctor and patient with LCIS.
Why do women choose mastectomy?
Many women chose to remove both breasts when one has cancer. In 2016, a research report identified some reasons:
- Worry about recurrence
- A desire for symmetry (either with or without reconstruction)
- To forego the need for radiation (for patients with no lymph node involvement)
In a total mastectomy today, the doctor removes the entire breast and nipple; in a subcutaneous mastectomy, the nipple remains intact.
Since 2006, the rate of bilateral mastectomies has increased.
Why did I choose a bilateral mastectomy?
I have invasive lobular cancer (ILC) which is often described as “sneaky” (cancer does not have agency!) when the more accurate description is “ILC doesn’t show up well on mammograms.” My LCIS was found by accident in 2011, and my ILC was found by accident in 2017.
My cancer was not found early, and my initial lumpectomy was not clean (an edge had cancer cells). So I was going to need another surgery. I was tired of mis- or late-diagnosis and had no faith in technology to catch a recurrence. Of course, recurrence should be the the least of my worries, because my cancer had spread to lymph nodes (localized metastasis).
The second surgery discovered another tumor in the left breast as well as LCIS. So it’s possible that a third surgery might have been needed. Or that the second tumor would have been missed. My right breast was riddled with atypical hyperplasia (a risk factor) but no cancer or additional LCIS. Removing it still feels like the right decision for me.
Although lobular cancer is the most likely to appear in both breasts, bilateral cancer is an unlikely occurrence.
Going flat
Breast reconstruction is plastic surgery which creates a breast-like shape on the chest that is devoid of sensation.
Doctors, especially plastic surgeons, as well as almost every website devoted to breast cancer equate mastectomy (single or bilateral) with reconstructive surgery. But few websites provide much detail on the perils of reconstruction or the option of going flat.
Moreover, research regularly treats mastectomy and reconstruction like they go hand-and-glove:
Mastectomy plus reconstruction had two times the increased risk of any complication compared to lumpectomy plus radiation.
No mention of mastectomy without reconstruction.
A 2014 study found that about that 44% of women who had mastectomies did not have reconstruction. Recovering from a mastectomy with no reconstruction is faster than recovering from mastectomy with reconstruction; there are fewer surgeries involved and fewer complications.
But as Peggy Orenstein wrote in 2013, it’s not cancer in the breast that kills you. Breast cancer becomes deadly when it spreads to bones or other organs, when it metastasizes.
Until we understand what causes breast cancer and what triggers its deadly march out of the breast into the body, some of us will continue to voluntarily choose to minimize our risks with mastectomy.