What Your Doctor Really Thinks About You

I am a delightful, pleasant, well-oriented, alert, elderly lady. So say my doctors. And, interestingly enough, those doctors I trusted most were those who were the most likely to speak well of me. The doctors I least liked defined me by negatives like elderly—I was 60 at the time! My favorite doc called me delightful. Back at you, Dr. McB.

I discovered this all when I asked my surgeon for my complete file in preparation for writing a book about hormone negative breast cancer. Amazing reading. Why doctors feel they need to make personal comments about patients is beyond me. If I were depressed or confused, OK. But otherwise, what is the point?

Whatever the reason, these comments told me a lot about my relationship with my doctors.

Doctors, whether they know it or not, are human, and they like some people more than others, so it is not surprising that some of my doctors were more fond of me than others. What’s important, though, is that whether a doctor likes or dislikes you can affect your care. So says Jerome Groopman, M.D., in How Doctors Think. Doctors who like you are more apt to listen to your complaints and take them seriously, rather than jumping to conclusions based on generalities that may or may not apply. Worse, not listening may mean they miss or misdiagnose important symptoms. These feelings can be even more pronounced in the seriously ill, Groopman says, noting research by social psychologist Judy Hall. Some doctors have problems dealing with patients with poor prognoses, Hall says, because it makes them feel powerless and frustrated.

I went through a slew of oncologist during and after treatment. I was an active participant in my care, so if a doc was disappointing, I moved on.

Here’s Oncologist #1,a brusque fellow who first told me rather mercilessly that I had hormone-negative breast cancer, which was aggressive and lethal and, because of that, I would need chemotherapy. “Unfortunately, this lady has an aggressive form of cancer,” he wrote afterward. This lady? Unfortunately, indeed. How warm and cozy. I went to him once and left devastated. I did not need that. I liked him as much as he apparently liked me. He also wanted to overtreat me—with four dense doses of Adriamycin and Cytoxan followed by four doses of Taxol. I had a small tumor—1.1 cm and my disease had not spread to my lymph nodes, so the Taxol was not necessary.

Oncologist #2 made no comments about my personality, but did note that I had gained some weight. In fact, I had lost weight—intentionally, through exercise and healthy eating. Shows how much he paid attention. Also, my blood work from him lists me as male. So…. He was my primary oncologist and I am secure in the treatment he gave me—four doses of AC. I fired him after treatment because he was habitually late or absent. One day, he was an hour and a half late. This was for my pre-chemo appointment, so it meant I had to wait another hour and a half for chemo, which sort of blew the good vibes I had developed through my acupuncture session that morning. Plus, the office increasingly filled with his other patients and was ultimately packed with many very ill people. It was a horrible environment and I ended up in tears. I told him this. He shrugged it off. When treatment was over, I shrugged him off.

Oncologist #3 was a woman and I thought maybe that might help, so I tried her for follow-up care. Sexism bites. She insisted I take tamoxifen, even though I was ER-negative and it wouldn’t help. She scheduled me for an unnecessary bone scan even though I had no symptoms. And she called me elderly. I could call her a few things, but I did not call her back for an appointment.

My radiation oncologist was a doll. I truly loved visiting her. She was upbeat, encouraging, and told me my prognosis was excellent—something the others didn’t feel necessary to consider mentioning. And, she called me delightful. We talked a lot about medicine and some about art and about hiking Colorado’s mountains. I went to her for follow-up care until she got a better job and moved south. Our loss. Big time.

My surgeon is a prince. I feel incredibly secure being in his capable hands. I know he took out all the cancer—with good, clear margins. He called me pleasant, which I think I normally am. He also said I was alert and well-oriented, which sort of damns me with faint praise: Patient found her way to my office; does not drool. Still, I know this was meant as a positive in his mind. I will soon graduate from his care and will miss him. The radiologist who first found my cancer called him meticulous. He is and I value that.

So, what does this mean in finding and working with the right doc?

1. Trust your gut. If you don’t like the doc, he just might feel the same way, and that could affect your treatment.
2. Get the best care you can afford. If this means heading out of town, do it. Cancer is a big deal; it deserves the best docs. US News and World Report lists the top 50 cancer centers here.
3. Do your research. On the left, I have listed some top websites for breast cancer information. Spend some time with these excellent resources--you'll learn a great deal.
4. Ask questions. A good doctor will take time to answer them. My radiation oncologist even drew a picture for me, explaining how radiation works. More evidence that she was good. She spent more than an hour talking about all types of treatment with me and my husband. And she treated me like a smart adult who could understand her.
5. Write down the answers. I still consult my treatment notebook, in which I wrote what the doctor said—direct quotes in quote marks, journalist that I am. This comes in handy for follow-up research.
6. Call back with questions. This is your life. If things aren’t making sense the way they should, ask.
7. Respect even the worst doctors. First, respect breeds respect. Second, these folks spend their lives around cancer, so they deserve a break. That said, if they are not serving you well, go elsewhere.
8. Find a patient advocate. If you cannot wrap your head around this information, don’t try to go it alone. Better yet, go to a center that has a Nurse Navigator program—these people are trained to help you make sense of treatment. They ask the questions you don’t know to ask, and they understand the answers.
9. Get copies of all your reports, especially your pathology reports. This is how I found out what doctors said about me.

Oprah's Article on Triple Negative

O, the Oprah Magazine, ran an article on triple negative breast cancer a while back:

The Breast Cancer Nobody Is Talking About
By Mary A. Fischer
One virulent, fast-acting type of breast cancer attacks 

more than twice as many young black women as all other women.

In May 2006, as she was getting dressed for work, Lori Booker felt a small lump in her left breast. Only 32, she was concerned but thought it was probably just a cyst and made an appointment to see her gynecologist. With a demanding job as a computer teacher at a Chicago public high school, Lori missed a couple of appointments, and two months later, when she finally had her first mammogram, the lump had doubled in size. A biopsy came back with grim results: She had aggressive, advanced-stage breast cancer. Crying, Lori thought the lab must have made a mistake. "I'm too young for this," she sobbed. more.

TAC Improves Disease-Free Survival for Triple-Negative Breast Cancer

What type of chemo works best for triple negative breast cancer? If it’s early stage but has progressed to the lymph nodes, docetaxel, doxorubicin, and cyclophosphamide (TAC) was the most effective according to research published in the March 2009  Journal of Clinical Oncology.

TAC also worked well for those with luminal B who also took tamoxifen.

(Most patients know doxorubicin as Adriamycin and cyclophosphamide as Cytoxin.)

Researchers assessed different types of breast cancer to determine their value in evaluating patients’ prognoses and their responses to adjuvant chemotherapy (chemo after surgery). The types they studied:

• triple negative (estrogen receptor [ER]–negative, progesterone receptor [PR]–negative, HER2/neu [HER2]–negative).

• HER2 (HER2-positive, ER-negative, PR-negative);

• luminal B (ER-positive and/or PR-positive and either HER2-positive and/or Ki67high);

• luminal A (ER-positive and/or PR-positive and not HER2-positive or Ki67high);

 
They studied 1,350 patients from the Breast Cancer International Research Group (BCIRG) 001 trial. Of these:

•14.5 percent were triple negative, with a three-year disease-free survival (DFS) of 67 percent;

• 8.5 percent were HER2, with a three-year DFS of 68 percent;

• 61.1 percent were luminal B, with a three-year DFS of 82 percent;

• 15.9 percent were luminal A, with a three-year DFS of 91 percent.

Source:

Judith Hugh, John Hanson, Maggie Chon U. Cheang, Torsten O. Nielsen, Charles M. Perou, Charles Dumontet, John Reed, Maryla Krajewska, Isabelle Treilleux, Matthieu Rupin, Emmanuelle Magherini, John Mackey, Miguel Martin, Charles Vogel, “Breast Cancer Subtypes and Response to Docetaxel in Node-Positive Breast Cancer: Use of an Immunohistochemical Definition in the BCIRG 001 Trial,” Journal of Clinical Oncology, 27 (8 ), 1168-1176. 2009.

Consider Signing Up for a Breast Cancer Clinical Trial: Here's How

Breastcancer.org, one of my favorite sites, has important information on clinical trials for breast cancer:

Clinical trials are research studies in which people agree to try new therapies (under careful supervision) in order to help doctors identify the best treatments with the fewest side effects. These studies help improve the overall standard of care.

Today, fewer than 5% of breast cancer patients receive treatment for their disease in a clinical trial. Why? One factor is that information about current trials and how to enroll in a trial are often not well understood. In this section, you can learn more about what clinical trials involve and how to join one. more. 

Cases of Hormone-Negative Cancers Decreasing

Good news for our daughters and granddaughters:

Women are increasingly more likely to have the less aggressive form of breast cancer, hormone-receptor-positive (ER-positive and PR-positive), with smaller tumors, according to research published in the March 2009 British Journal of Cancer.

Scottish researchers compared 420 tissue samples from 1984 and 1986 with 653 from 1996 and 1997. In that ten-year span, they found that the proportion of estrogen-positive cancers rose from 64.2 percent to 71.5 percent. More grade one tumors were also diagnosed.

The good news here is that these cancers are easily treatable, offering a more positive prognosis than estrogen-negative cancers.

Why?

Lifestyle changes could be one influence, as could better screening.  As usual, doctors say more research is necessary.   

Source: 

Brown, SBF, Mallon, EA, Edwards, J, Campbell, FM, McGlynn, LM, Elsberger,B, and Cooke,TG, “Is the biology of breast cancer changing? A study of hormone receptor status 1984–1986 and 1996–1997, British Journal of Cancer (2009) 100, 807–810. doi:10.1038/sj.bjc.6604934 www.bjcancer.com

Urine test can show spread of estrogen-receptor-negative breast cancer

Breast cancer spread—especially of estrogen-receptor-negative, including triple negative—can be detected through a urine test. 

This is according to research published online in Proceedings of the National Academy of Sciences February 23.   The urine test can detect tumors that are about to metastasize because they go through a process also seen in the development of human embryos, called epithelial to mesenchymal transition (EMT).  Phew!   A protein called lopcalin 2 (lcn2)  triggers the EMT in breast cancer and can be detected in urine. So a simple urine test for lcn2 could potentially predict the spread of cancer.  Women whose cancer has spread have especially high levels of lcn2.

“Lcn2 is among the genes most highly associated with estrogen receptor-negative breast tumors,” researchers Marsha Moses, Jiang Yang and colleagues at Children’s wrote.

Lipocalin 2 has been licensed to Predictive Biosciences,  in Lexington, Massachusetts for development of clinical use, which means the test may eventually be available for consumer use, although the process from laboratory tests to doctors' use can be slow and cumbersome.

Source:  

Jiang Yang, Diane R. Bielenberg, Scott J. Rodig, Robert Doiron, Matthew C. Clifton, Andrew L. Kung, Roland K. Strong, David Zurakowski, and Marsha A. Moses. Lipocalin 2 promotes breast cancer progression. Proceedings of the National Academy of Sciences, 2009; DOI: 10.1073/pnas.0810617106