March 27, 2007
Washington Post

Uphill Fight for a Second Opinion

'Wait and See' Was Not Her Plan After a Worrisome Mammogram

By Marla Brin

I have a lump in my breast. I know this because I had a mammogram, and there it was. . . a white spot where it was not supposed to be. A white spot that did not appear on my mammogram two years earlier. The radiologist advised me to wait four to six months and have another mammogram.

No way was I going to do that. What I wanted was a second opinion, and fast.

I knew that was the right thing to do because, as a child of the middle class, I grew up with kids who became doctors and accountants, and I happen to have a friend who is an oncologist in another city who was willing to share some of her professional expertise. I mentioned to her that the radiologist had said my lump could be a "lymph node that migrated." My friend the oncologist told me that lymph nodes may get larger or smaller but they do not migrate and that a second opinion was in order. And that I should get an MRI of my breast as well, to make sure that the lump found by the mammogram was the only lump in my breast and that no smaller lumps were hiding. Then we would know what to do about a biopsy.

A study published in December in the journal Cancer confirms the importance of getting an impartial second opinion. Even better, according to the study, is getting a "multidisciplinary" second opinion. That is, a second opinion rendered by several specialists from different areas, such as radiology, oncology and pathology. In the University of Michigan study, researchers examined the effect of such a consult for a group of women with breast cancer diagnoses. The consult resulted in changed treatment recommendations for 52 percent of the women whose records were reviewed.

In spite of its importance, getting a second opinion turned out to be harder than I ever imagined. Though I am educated, I hadn't the slightest idea how to go about arranging it. For a broken bone, I would go to an orthopedic surgeon. But for a mammogram? Should I look under "breast" in the Yellow Pages?

My friend the oncologist explained that doctors who read mammograms are called breast radiologists and that I should arrange a consult with one.

Unfortunately, my new gynecologist, who took over when my old one retired recently, did not think I should get a second opinion. Or, rather, she felt that, although she is not a breast radiologist, she could read my mammogram and serve as my second opinion. And in her opinion, I should wait six months and see what happened. And not get the MRI. And not get a biopsy.

I have never been a willing participant in mammograms. Though I am 46, I have had only three in my life. I had figured that there was no need to radiate my breasts and perhaps risk giving them something they did not have.

I arranged this mammogram, the one that found the lump, only because I had had a dream -- a dream that I had breast cancer. In the dream there was a black seed in my left breast. It looked somewhat like a watermelon seed.

There was only one seed, but in the dream it could open up like a dandelion and then I would have little black flecks all through my breast. Call me superstitious, but I went in for the mammogram, just in case.

After we found the lump in my left breast, I told my gynecologist about the dream. I said that I probably would have wanted a second opinion anyway but that given the radiologist's "migrating lymph nodes" remark and my dream, I definitely wanted to pursue a second opinion, just to be sure.

She said that she once had a dream that her nanny poisoned her two children but that she did not fire her nanny, because she could tell the difference between a dream and reality.

Try Again

She clearly was not going to be very useful in responding to my need to make sure the lump was not cancer. I turned to a high-powered lawyer acquaintance of mine whose breast cancer was diagnosed last year. She pointed me to a breast radiologist who was both clinically skilled and would treat me with dignity. High-powered lawyers don't tend to take unkindness or disrespect lying down.

But when I called to request a consultation, I discovered the breast radiologist would not look at the mammogram films and render an opinion if the request did not come from another doctor, instead of just from me.

I deliberately have a PPO, not an HMO, so that I can choose which doctors I see, and yet something as basic as a second opinion was starting to seem out of reach. Luckily, I see a family practitioner, and she gave me the permission I sought. Well, half of it. She didn't think it was a bad idea for me to have an MRI, but writing me a prescription for one was out of her area of expertise.

Strangely, the very afternoon of my discussion with both the breast radiologist's office and my family practitioner, I tripped over a magazine interview with Sheryl Crow. She said her breast cancer diagnosis, six months or so before my suspicious mammogram, also had followed a routine annual mammogram, which showed a change. The diagnostician told her not to worry -- to come back in six months. She was initially fine with that -- until her OB-GYN questioned that counsel and advised Crow to have a biopsy. She did, and it was cancer.

Concluded Crow: If a woman has dense breasts, as she does (and as I do), and they find something new on a routine mammogram, and they tell you to come back in six months, don't wait! I felt like I was meant to read that. It also really struck me that she is rich and white and famous, and had people to call and ask, and no one denying her access to medical care or testing.

This journey has really opened my eyes. Even with all my advantages, I still have had to fight for the health care I have been told is best for me.

The Right Friends

What if I were uneducated? What if I were poor? What if I grew up with more people who became firefighters or police officers or home health aides than doctors, so I had no doctor friend to call and explain things to me -- to tell me that lymph nodes don't migrate? What if I did not have health insurance or the money to pay for my own tests if the insurance did not cover them? What if I did not know that I could fight for the health care I believe is best for me?

It seems clear to me now why poor people are reported to die from treatable illnesses in higher numbers than those in the middle class. To navigate the health-care system, in addition to having health insurance, you need to know the players, you need to know your rights, you need to have good advice available to you from people who are both medically educated and interested in your well-being, you need to have money to pay your way, and you need to be willing and able to advocate for what you need.

I see that I am lucky. I have all those things. And I am lucky for another reason.

As a result of obtaining the second opinion and a more definitive test, we discovered that mine was a false alarm. Turns out the "new" spot -- a lymph node, according to the newest findings -- had been there the whole time. The first radiologist had failed to read both of my earlier mammograms for comparison, and the one she did read was poorly done; it did not show the entire breast area, and so the "new" spot had not been evident.

Thanks to the second opinion, I can go back to a once-a-year schedule of mammograms, instead of waiting to see, every four to six months, if the "new" spot would grow larger. Thankfully, I had the resources to insist upon a second opinion and a further test.

What about those who are not so lucky??