Yes, it’s true –

Too many women are opting for prophylactic double mastectomies, even when unnecessary. Breast-cancer hysteria dominates our landscape and is often prompted by unfounded fears rather than sound medical advice.

But it’s also true that many women are making informed, educated choices about getting prophylactic double mastectomies and seizing the reins of their medical care.

I am one of these women.

Although I had a history of breast cancer, I was NED (No Evidence of Disease) at the time of my surgery. In addition, I tested negative for the BRCA1 and BRCA2 mutations.

Yet, in my case, the decision to undergo this surgery was still medically sound.

(I am not trying to persuade others to get double mastectomies. This is a deeply personal choice, and each woman must consult her doctor and make the best medical decision possible.)

I do understand medical professionals’ concerns that too many get this extreme surgery for no good reason. And I understand that there’s no such thing, really, as a preventive double mastectomy because we cannot prevent breast cancer.

I get it.

And I got it. Breast cancer, that is. The only kind I, as a patient, know.

The killing kind.

My First Choice: Breast Conservation

In 2001, I was diagnosed with cancer in my right breast a few months after a mammogram missed my tumor, thanks to my highly dense breasts. I found the tumor during a routine monthly breast self-exam.

My stellar surgeon presented me with choices: a single or double mastectomy, or lumpectomy with radiation. He was a breast conservationist, and so was I. We were on the same page: he explained that studies showed that a lumpectomy with radiation was just as effective a treatment as a mastectomy.

I wanted desperately to minimize surgery and keep my breasts. I made a sound decision: lumpectomy with radiation.

My surgeon tried to get clean margins, but my margins were dirty. A few weeks later, I had to get a re-excision, and he got clean margins. But the second major scoop taken out of my right breast left it quite deformed. Yet, I didn’t want any more surgery than I had to have, so I accepted this deformity – though I wasn’t happy about it. When my misshapen breast healed, I started my regimen of radiation and chemotherapy simultaneously.

I got followup mammograms and, because of my dense breast tissue, MRIs. As my oncologist said, “We don’t want you slipping through the cracks.” I thought I was done with surgery.

I was wrong.

The Road to a Prophylactic Double Mastectomy

It was 2006 when my oncologist called me with the MRI results that would change the course of my medical journey. When I first heard his voice, I expected him to tell me – as he always told me – that the MRI was negative. Instead, he sounded awkward and uncomfortable. He told me that the MRI picked up a significant mass in my right breast.

I can’t explain the terror. So I won’t.

My oncologist ordered an ultrasound of my right breast. I asked the doctor who evaluated the ultrasound what he thought this mass could be. His answer was telling. He said, “Your breasts are so dense, it’s impossible to see what’s going on there.” He pointed out that the lumpectomies made it even more difficult to assess what was going on in my right breast.

My surgeon ordered removal of the mass and a biopsy. The doctor performing the biopsy also remarked that my breasts were so dense, it was difficult to see what was going on.

The good news: the mass was scar tissue from a previous lumpectomy. The bad news: I felt I had time bombs attached to my chest. I already had breast cancer that a mammogram missed. And other test results and doctors couldn’t see what was going on in my breasts.

Scary, scary.

Oh, and the third “lumpectomy” gave my breast freak-show status.

My surgeon and I stopped seeing eye-to-eye. He seemed to think it was acceptable for me to live with a terribly deformed breast that was getting more and more difficult to read, even though that breast had a history of cancer. He thought it was acceptable for me to constantly live with a real risk of “slipping through the cracks” because of my unbelievably dense breasts.

So I thought it was acceptable to part ways with him.

I found surgeons who believed my decision for a prophylactic double mastectomy with reconstruction was, in their words, “medically sound.” So on December 1, 2006, I had my breasts removed with a DIEP flap reconstruction.

It was no walk in the park, and one of the most difficult things I’ve endured.
But the right decision for me: biopsy results on my supposed healthy left breast revealed, according to my oncologist, that my “left breast was filled with cells that like to become cancer.” He was ebullient, saying we had “done the right thing!”

I knew the risks going into the surgery. I knew that a double mastectomy was not 100 percent preventive, that I might have a recurrence. I knew that my right breast would turn out somewhat smaller than my left breast.

A few years and a prosthesis later, I’m doing as well as I can. I know breast cancer can metastasize, and I can still get cancer in my breasts. In addition, I have residual pain that acupuncture has been relieving. My torso has many numb areas. I can no longer run, but I swim and walk. I have body image issues, although they are no worse than the body image issues resulting from three separate lumpectomies – just different.

Breast cancer is complex, as is any surgical decision. There’s no such thing as a preventive double mastectomy, as breast cancer cannot be prevented. All we can do as patients is make the best medically sound decisions we can.

Feel free to share any surgical (or non-surgical) experiences – the good, bad, the ugly, and the beautiful.

Have you had trouble seeing eye-to-eye with any of your doctors? Did a good patient-doctor relationship go awry?