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Love Your Cancer Doctor? Get a Second Opinion

My ordeal began with an acute pain in my breast that I self-diagnosed as mastitis, an infection that usually affects breast-feeding mothers. But I hadn’t breast-fed in 18 months. After a visit to the emergency room and two rounds of antibiotics to reduce the pain and swelling, a lump remained.

I had noninvasive ductal carcinoma in situ, it turned out, and lots of it. Some consider this Stage 0 cancer, while others say it should not even be called cancer at all.

The diagnosis came just six weeks after my husband, two toddlers and I had relocated from New York to Los Angeles for my husband’s new career.

My general practitioner, who was new to me, recommended an oncology surgeon who would be able to see me right away. She was warm, sympathetic, smart and direct. I loved her immediately and knew she was the one for me. Based on my earlier ultrasounds and mammogram, she told me that a bilateral mastectomy would probably be the way to go, because I had breast cancer on both sides of my family. When I flinched, she said that if I preferred, I could have a lumpectomy within the week to be certain of what was growing inside me.

Whoa. It was a lot. But I loved her and I was starting to feel better. She ran additional biopsies to see if she could glean more information from the tangle of disease in my right breast. The results confirmed the original diagnosis: Stage 0, D.C.I.S.

I was encouraged that the surgeon told me I probably wouldn’t need chemotherapy or radiation, which in my mind were the boogeymen of cancer.

But I was about to lose both breasts. Was I supposed to get a second opinion? Do you have to if you trust your doctor and she has an incredible reputation? My surgeon was lauded all over the media and had even treated high-profile celebrities. She was by all accounts exceptional. One of the top doctors in Los Angeles, if not the country.

A few friends and relatives recommended the second opinion. My G.P. said I should do it if it would give me peace of mind and she recommended a second surgeon, who was also said to be an oncology rock star.

“You don’t want a doctor who doesn’t like that you’re getting a second opinion,” said my best friend’s husband, who is a reconstructive plastic surgeon. “She should encourage it.”

My husband and I made our way to the second surgeon a few days later. He was brief but not hurried. He took one look at my breast and said he thought there was “skin involvement,” which sounded scary. He wanted more biopsies. “Do you have to?” I asked. The other ones had been so painful. He said he did and that a radiologist would do them in a couple of days.

I felt much worse after the meeting. The doctor was not aloof, but cool. He was not comforting and his manner felt perfunctory. But I went with his suggestion.

A few days later I got the call: It wasn’t just a mess of D.C.I.S., the new biopsies showed. There was a small invasive tumor outside the milk ducts and it was positive for estrogen, progesterone and something called HER2. That last one is the doozy, the ingredient that made the tumor especially aggressive.

That was the bad news. The “good” news was that there was a targeted therapy to treat a HER2 positive tumor, but the Food and Drug Administration had approved it only for use before surgery.

I circled back to the first surgeon. “Well, that was a curveball,” she said. But she said the tumor was small enough that I still might not need chemo and that surgery soon would help determine exactly what was happening in there.

Gah! What to do. Doctor 1’s proposed path seemed cleaner, easier. Doctor 2’s was a nightmare of chemo, hair loss, all manner of side effects, followed by major surgery and possibly radiation.

I sat with it for a couple of weeks, and visited three medical oncologists to get their opinions. They all agreed that it was best to do chemo before, to avoid a major fight with the insurance company and to see how the tumor responded to the drugs. They all emphasized that the size was irrelevant with HER2 tumors since they are so aggressive.

I chose option 2. There followed many rough months of toxic drug infusions, quelled by acupuncture and (thank you, California!) medical cannabis.

My choice was validated when the giant tumor reduced significantly with chemo. D.C.I.S. does not typically respond to chemo, so there must have been far more “invasion,” as they call it, than the biopsies showed.

I still had to have a mastectomy because of how much D.C.I.S. remained after chemo (I chose to remove both breasts because of my family history; I didn’t want to have to wonder when it would occur on the healthy side). I also had to undergo radiation, so it was no cake walk, but I was able to enter each treatment phase secure in the knowledge that I had chosen the path that was right for me and held the fewest surprises.

Yes, I had cancer, but I now know how lucky I was. I had good health insurance and, not without some steep costs, could choose whichever doctor I wanted. So many women are hemmed in by policy and financial restrictions that make it difficult to find the very best oncologist for them. It’s heartbreaking to hear their stories. I’ve heard many of them in my cancer support group.

And many of those same women had similar misgivings about the second opinion: that they might offend the first doctor, or that they were simply too stunned or depressed to contemplate “shopping around” for doctors. And it was a slog, both exhausting and expensive. Once I got started, I pursued second or third opinions for my medical oncologist, plastic surgeon and radiation oncologist.

And I learned that when your life may be at stake, you may appreciate warmth and friendliness, but that is not what you’re shopping for.

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