Tuesday, November 22, 2011

The challenge of being your own advocate

I am caught in a web of conflicting medical paperwork. At issue is whether or not I need a follow-up mammogram based on something that was probably nothing on my last mammogram; the doctor who originally said I needed a follow-up has changed his mind, while the one who said I did not need a follow-up has also changed his. So they have essentially both flip-flopped. And, meanwhile, only one appears to be looking at the proper document to assess the situation.


Here’s the deal. Last May, I had a mammogram—I was five years past diagnosis, so this was a big deal. The radiologist told me all was well and sent me to the surgeon. The mammogram gets sent digitally to the surgeon immediately, so he sees it before he sees me. He looked at it, and noticed that the radiologist suggested I have a follow-up in six months because he saw a shadow on my right breast.

The surgeon was royally annoyed. This is nothing, he said. They caught part of a node, and there is no sign of disease. I have looked it over extremely carefully. I know this is nothing.

Still, he said, because the radiologist said I needed a follow-up, I needed a follow-up. Medical protocol and all. But the surgeon, bless his heart, did not want me to worry for six months, so he set up an appointment for a new mammogram and ultrasound within the week.

The next day, the surgeon’s nurse called me to tell me I needed neither test. The radiologist had looked over my mammograms through the years—I had been getting them for 40 years at the same place. Turns out that shadow was truly nothing—it popped up every now and then over the decades and, sure enough, as my surgeon thought, it was a node.

Case closed.

Or not.

This fall, I got a note from the radiology office saying I needed a follow-up. I called the surgeon’s nurse and reminded her that she had told me I did not need the test. She had no record of that conversation and, not surprisingly, no memory of it either. She suggested I have the test.

So I called the radiology office to schedule the test and they said there was an addendum to the report that said I did not need the extra test because the shadow had shown up in previous tests for decades and the radiologist was assured it was nothing.

So, the surgeon had said I only needed the test because the radiologist insisted. Now that the radiologist said I did not need it, certainly I would not need the test.

Not so. Now my surgeon and my primary care physician are both insisting I get the test done, despite the advice from the person who actually started this whole thing rolling.

I, of course, cannot talk to the doctors. I talk to their nurses, who are wonderful people. But the facts are getting filtered through so many lenses that nobody seems to remember anymore who is on first and what is on second.

I do know, though, that this is my body. I have been checking that spot carefully for six months when I do my breast exams—and even in between. There is no lump there, and I discovered my cancer myself by feeling a lump, so I am confident that I would feel another lump, if it were there. Plus, the follow-up test is based on a recommendation that has since been recinded.

If I really felt I needed the test, I would not hesitate. But I do not need radiation because of a paperwork snafu.

To repeat: Aurghhhhhhhhh!!!!!!

Friday, November 18, 2011

FDA: Avastin No Longer Approved for Breast Cancer

An FDA panel voted unanimously to pull approval for the use of Avastin (bevacizumab) in breast cancer, an extension of its June ruling in which the agency began the process of withdrawing approval of the drug for metastatic breast cancer. It is still approved for use in colon, lung, kidney, and brain cancer.

FDA Commissioner Margaret Hamburg, MD, said the risks of the drug far outweighed its benefits. In a statement from the FDA, Hamburg said:

This was a difficult decision. FDA recognizes how hard it is for patients and their families to cope with metastatic breast cancer and how great a need there is for more effective treatments. But patients must have confidence that the drugs they take are both safe and effective for their intended use. After reviewing the available studies it is clear that women who take Avastin for metastatic breast cancer risk potentially life-threatening side effects without proof that the use of Avastin will provide a benefit, in terms of delay in tumor growth, that would justify those risk. Nor is there evidence that use of Avastin will either help them live longer or improve their quality of life.

The drug's manufacturer had argued that the drug be continued for metatastic triple-negative breast cancer, which has few options. That option was dismissed by the FDA. Commissioner Hamburg did encourage more research on the drug's effectiveness for advanced breast cancer. In December, 2010, when the FDA first considered pulling the drug, I argued:

More research is needed specifically on Avastin and triple-negative. This requires a change in focus, but that focus might ultimately yield enough evidence to demonstrate the drug's effectiveness--or lack thereof--for this important and specific subgroup.

Complementary/Alternative Therapies Conference

The Annie Appleseed Project is sponsoring its 5th Annual Evidence-Based Complementary and Alternative Medicine for Cancer conference in West Balm Beach, Florida March 1 through 3. Check the group's site for more information. Early registration is $209, going up to $239 after December 10 and $279 after January 10. Hotel rooms start at $139. Some scholarships are available. People with cancer, family, friends, and advocates are invited.

Monday, November 14, 2011

Want to start a cancer support group?

Thinking of starting your own cancer support group? That could be a great way to meet other people walking the same journey, and is often a source of lifelong friendships.

First, check with your local hospital or clinic to see what is available there. And look into local cancer organizations—Breastcancer.org offers ideas on finding nearby resources.

If you have checked out local support groups and haven't found what you need, it might be time to consider starting your own. It takes time, commitment, and organization. But it can be well worth it.

Some support groups are more structured than others. Some things to consider:

How often do you want to meet? And for how long? Monthly usually works well—the first Tuesday or something like that, so people can remember. A couple of hours is usually enough.

Will you have the same structure for each meeting? You can plan something loose—first a speaker or a presentation, then some organized discussion.

What local speakers are available? A dietitian at the local grocery chain can be a great speaker on diet. An oncology nurse or a nurse navigator can talk about follow-up treatment. A psychologist or social worker can speak about managing fear of recurrence. And women who have gone through the cancer journey themselves can be powerful motivators.

How do you keep the discussion on topic enough, but loose enough to allow people to talk and share? This is probably the trickiest. Groups can too easily devolve into negativity, and dominant personalities have to be managed. So you really need to have a moderator who introduces a general theme of discussion and allows people to speak but not dominate. The moderator needs to know that she is there to help others discuss—not to blabber on herself (a common problem with beginning moderators.)

And always try to end on a positive note. Have somebody in charge of a final comment—a poem, a quote, a short anecdote—that leaves people hopeful. Too many people leave too many support groups sad and depressed. They'll not want to return for more of that--nor should they.

If you need help starting a group, or are looking for a speaker, contact me. I have managed many, many, many groups in my career and have spoken on diverse topics--diet and nutrition, writing as therapy, maintaining a positive attitude, taking care of the Entire You. I'd love to help.

Tuesday, November 8, 2011

Test May Help Determine TNBC Prognosis

Human breast cancer tumors that grow after being grafted into mice are usually those that are likely to metastasize, or spread in the body, leading to lowered rates of survival, according to research at the University of Utah. This simple procedure might lead to a test to determine which cancers are the most aggressive; this can be especially important in evaluating which cases of triple-negative need aggressive therapy. The full research is in Genetic Engineering & Biotechnology News.

Herpes Virus Can Kill TNBC

In lab studies at the Memorial Sloan-Kettering Cancer Center, the mutant herpes virus NB1066 was effective in killing triple-negative breast cancer cells, according to research reported at the American College of Surgeons 97th Annual Clinical Congress. The bonus: The virus kills cancer cells while not destroying healthy ones, a huge improvement over current forms of chemotherapy.

In the research on TNBC cells, 90 percent of the most sensitive cells were killed within a week of treatment; 70 percent of the least sensitive cells were killed. In research on mice, the tumors had largely disappeared within 20 days.

The release, from the American College of Surgeons:

SAN FRANCISCO—Researchers from Memorial Sloan-Kettering Cancer Center in New York City report they have successfully treated triple-negative breast cancer (TNBC) in petri dishes and in mouse models with a method based upon a herpes simplex virus. The study on the viral-based therapy was reported today at the 2011 Annual Clinical Congress of the American College of Surgeons.

Triple-negative breast cancer is an aggressive type of breast cancer that can account for up to 20 percent of all cases and is responsible for a disproportionate number of breast cancer deaths, according to the researchers. Moreover, the disease is most likely to surface in younger women (< 35 years old), especially if they are African American or Hispanic. Because these types of cancerous tumors do not express the estrogen receptor, progesterone receptor, or HER-2 receptor, found in other more common types, newer targeted therapies such as tamoxifen and Herceptin are ineffective against the disease.

“Triple-negative breast cancer patients are in dire need of targeted therapies,” according to Sepideh Gholami, MD, a research fellow in the laboratory of Yuman Fong, MD, FACS, at Memorial Sloan-Kettering Cancer Center. “Although these tumors respond to a variety of chemotherapies, they have a high recurrence and metastatic rate.”

In the study, Dr. Gholami and her colleagues examined TNBC cell lines and infected them with a herpes simplex virus called NV1066. After treatment with the virus, more than 90 percent cell kill was achieved in all cell lines within a week. Furthermore, the researchers injected TNBC cells into laboratory mice. After treating the mouse models with the virus, and measuring the change in the tumors over 20 days, they found that the tumors had largely disappeared.

It was very surprising to see such an intense response. “The difference was dramatic, because sometimes we can stop tumor growth, but not necessarily achieve tumor regression,” Dr. Gholami said. “Our results are very exciting because we may be coming up with an approach that could potentially exploit the unique vulnerabilities of these specific cancer cells.”

Moreover, Dr. Gholami explained that TNBC cells have high levels of p-MAPK, a protein that promotes cancer cells to grow and has been reported as a potential cause for resistance to current conventional therapies. Knowing that the herpes virus specifically targets cells that over express this protein is the reason she chose to test this treatment protocol. “When we infect TNBC cells with the herpes virus and measure p-MAPK levels, the protein level decreases with time after treatment with the virus,” Dr. Gholami said.

The hope is that advances in oncolytic viral therapy, which uses viruses tailored to target and destroy cancer cells while sparing healthy cells, will allow researchers to develop more effective strategies for hard-to-treat cancers. A similar herpes virus has been tested in clinical trials against head and neck cancers. But this is the first laboratory study to show promise in using the therapy to treat TNBC.

The next steps, Dr. Gholami said, are to map out the pathways in which the virus kills the tumor cells to determine how to improve upon this mechanism. In the future, the Fong laboratory, which is on the forefront in oncolytic viral therapy research, will continue this avenue of investigation in animal studies. The team will also work to identify leads to understand what existing chemotherapy drugs can be used synergistically with this viral therapy. Finding complementary treatments that kill fast-growing cancer cells and combat resistance is the key to possibly making a cure a reality.

If additional animal studies are also positive, human clinical trials could be on the horizon. “Our goal is to improve this version of the virus and get it into a clinical trial,” Dr. Gholami said. “Ultimately, I believe the treatment for TNBC will be a multimodality targeted treatment approach: potentially using a viral-based therapy plus some other targeted chemotherapy or radiation.”

The study was supported by grants from the National Institutes of Health and the Flight Attendant Medical Research Institution.

Other participants in the study include Chun-Hao Chen, MD; Sizhi Paul Gao, MD, PhD; Joshua Carson, MD, PhD; Taejin Song, MD, PhD, FACS; Jackie Bromberg, MD, PhD; and Yuman Fong, MD, FACS.

Physical Activity Benefit Linked to Receptor Status

Here we go again. Physical activity is linked to hormone-negative breast cancer. Oh, wait, it isn't. A new study that links sitting too long to an increased risk of breast cancer is getting a lot of media play lately. Its results, though, are limited to hormone-positive disease—a detail most reports ignore because, in general, most media reports ignore the significant difference between hormone-receptor-negative breast cancer and hormone-receptor-positive breast cancer.

Roxanne Nelson of Medscape Today, however, gets it right. In her overview of the "sitting too long" study, which was reported at the Tenth Annual American Association for Cancer Research (AACR) Conference on Frontiers in Cancer Prevention Research, Nelson writes:

The researchers found a significant protection of physical activity only for the estrogen-receptor (ER)-positive and progesterone-receptor (PR)-positive tumor types, said Dr. Steindorf. "These findings strengthen the hypothesis that lowering breast cancer risk with physical activity is at least partly related to hormonal pathways."

That is, researchers did not find a significant link between hormone-receptor-negative breast cancers such as triple-negative and exercise. So, our lack of exercise was less likely a factor in our getting this form of disease. Results also varied by menopausal status, with postmenopausal women gaining more of a benefit from physical activity than premenopausal women. As we know from other research, TNBC is more likely to affect younger, premenopausal women.

BUT, previous research has linked a lack of physical activity to an increased risk of hormone-negative breast cancer. And the effects of a lack of exercise, specifically metabolic syndrome, have been tied to triple-negative breast cancer. Symptoms of metabolic syndrome include obesity, high blood pressure, and high cholesterol. Exercise can trim all three.

I could go on, but the point here is that studies differ in their results for a variety of reasons—especially their methodology and the population they study—so one study is neither cause for alarm nor cause for complacency.

Physical activity, if you can handle it, is a great thing. It helps you in both body and soul. I will continue to get myself out to do at least four hours of decent exercise a week—usually a brisk walk. I always feel better afterwards and I know for a fact I cannot keep my weight at a healthy level without it.

Thursday, November 3, 2011

Depression tied to worse breast cancer outcomes

From the University of Missouri News Bureau (Nov.2, 2011):

COLUMBIA, Mo. – This year, more than 230,000 women will be diagnosed with breast cancer and nearly 40,000 women will not survive their battle with cancer, according to the American Cancer Society. New research from the University of Missouri shows that certain factors, including marital status, having children in the home, income level and age, affect the likelihood of depression in breast cancer survivors. Further, depressed patients are less likely to adhere to medication regimens, potentially complicating the progress of their treatment.

Ann Bettencourt, professor of psychological sciences at MU, studied who is most likely to experience distress following breast cancer diagnosis and when depressive symptoms tend to occur throughout the course of treatment. Bettencourt found evidence that single women and women with children in the home were more likely to be depressed during the year following treatment.

“Many women receive strong support following their initial diagnoses of and treatment for cancer, but then the social support can wane,” Bettencourt said. “Our findings suggest that both single women and mothers with children in the home may need additional support across the entire year following breast cancer diagnosis and treatment.”

The research also links depression levels with income and age. Women with different incomes tend to have similar levels of elevated depression during treatment, but those symptoms decrease among women with higher incomes in the year following treatment. Younger breast cancer survivors experience more depression during treatment than older patients, but report levels similar to those of older women after treatment is complete.

Bettencourt says identifying risk factors for depression among breast cancer patients is an important part of a woman’s prognosis. In a separate study, she links depression with both intentions to adhere to treatment plans and lack of adherence to medication regimens. The research shows that more depressed breast cancer survivors have less favorable attitudes toward and perceptions of treatment regimens and thus are less likely to adhere to them.

“Depression can interfere with patients’ willingness to adhere to medication regimens,” Bettencourt said. “Deviating from the prescribed course of treatment may complicate patient outcomes and threaten prognosis.”

The studies, “Predictors of Depressive Symptoms Among Breast Cancer Patients During the First Year Post Diagnosis,” and “Depression and Medication Adherence Among Breast Cancer Survivors: Bridging the Gap with the Theory of Planned Behavior,” were published in Psychology and Health.

Tuesday, November 1, 2011

Alcohol and Hormone-Negative

How many drinks a week are healthy? According to a new study published in JAMA, the Journal of the American Medical Association, as few as three a week can raise your risk of breast cancer by 15 percent. BUT, according to a story on The New York Times’ blogs, if you have no other risk factors, that can mean going from a risk of 3 percent to 3.45 percent, not a significant threat. Alcohol is just one piece of a complex puzzle in which family history, genetics, diet, exercise, and environment all play a role.

The effects of alcohol on breast cancer have been studied for decades, with varied results. Several studies have linked alcohol and the risk of breast cancer, most notably associating a family history of breast cancer, alcohol consumption, and hormone-negative disease. Notice, though, that this includes a family history, which in itself increases the risk of breast cancer.

Others have found less of a risk, or have found the risk limited to hormone-positive breast cancer.

A 2008 study categories the risk, which again is limited to hormone-positive, showing that one drink a day of alcohol of any type—beer, wine, spirits—increased breast cancer risk by ten percent. The risk rose by the drink—three daily drinks equaled a 30 percent risk. This is a relative risk—it is compared to the risk faced by a woman who drinks no alcohol or less than one drink a day.

Rather than trying to decipher the studies, a healthy approach is to limit alcohol to an average of less than one drink a day, even if the research is not definitive in terms of hormone status.

ALCOHOL AND HORMONE REPLACEMENT THERAPY: It may not just be alcohol that increases the risk of breast cancer—it could be hormone replacement therapy (HRT) plus alcohol. According to Danish research published in the International Journal of Cancer (2008), postmenopausal women taking oral estrogen who had one or two alcoholic drinks a day increased their breast cancer risk by three times that of women who neither drank nor took HRT. Those who took HRT and had more than two drinks a day increased their risk to five times that of those who ingested neither HRT nor alcohol. The research did not narrow its findings by receptor status, but HRT is more strongly associated with hormone-positive than with hormone-negative disease.


Althuis, Michelle D., Fergenbaum, Jennifer H., Garcia-Closas, Montserrat, Brinton, Louise A., Madigan, M. Patricia, and Sherman, Mark E., “Etiology of Hormone Receptor-Defined Breast Cancer: A Systematic Review of the Literature,” Cancer Epidemiology, Biomarkers & Prevention, vol. 13, no. 10, 1558-1568 (2004). Find a full copy at

Lew, Jasmine Q., Freedman, Neal D., Leitzmann, Michael F., Brinton, Louise A., Hoover, Robert N., Hollenbeck, Albert R., Schatzkin, Arthur, and Park, Yikyung, “Alcohol and Risk of Breast Cancer by Histologic Type and Hormone Receptor Status in Postmenopausal Women: The NIH-AARP Diet and Health Study.” American Journal of Epidemiology, vol. 170, no. 3, 308-317 (2009). http://www.ncbi.nlm.nih.gov/pubmed/19541857

Kabat, Geoffrey C., Kim, Mimi, Phipps, Amanda I., Li, Christopher I., Messina, Catherine R., Wactawski-Wende, Jean, Kuller, Lewis, Simon, Michael S., Yasmeen, Shagufta, Wassertheil-Smoller, Sylvia Rohan, Thomas E., “Smoking and alcohol consumption in relation to risk of triple-negative breast cancer in a cohort of postmenopausal women.” Cancer Causes and Control : CCC , pp. 1-9

Li, Yan, Baer, David, Friedman, Gary D., Udaltsova, Natalia, Shim, Veronica, and Klatsky, Arthur L. “Wine, liquor, beer and risk of breast cancer in a large population,” 
European Journal of Cancer, vol. 45, no. 5, 843-850 (2008).

Nielsen, Naja Rod and Grønbæk, Morten. “Interactions Between Intakes of Alcohol and Postmenopausal Hormones on Risk of Breast Cancer.” International Journal of Cancer, vol. 122, no. 5, 1109-1113 (2008).

Welcome--A Word from Pat

If you find this blog helpful, check out my book, Surviving Triple-Negative Breast Cancer.  It's an expansion of what you read here.