Power with the patient

CURE invited Kathleen (Kat) Werner, a breast cancer survivor, to serve as a guest blogger during the 33rd annual San Antonio Breast Cancer Symposium, December 8-12.

There were three main sessions today at the San Antonio Breast Cancer Symposium (SABCS) that had some of my fellow advocates discouraged that we weren't getting very far on the fight against breast cancer. I saw the sessions a little differently, giving some of the power to the patient to decide how they are going to attack breast cancer without having to worry about overcomplicated issues clouding their decisions.

A session in the morning shared various endocrine treatments for hormone-positive cancers and their comparisons of effectiveness. Then I attended a mid-day heated discussion on the evidence for and against changing mammography guidelines for women ages 40 to 49. In the afternoon, we had a frank look at BMI (Body Mass Index) and survival outcomes for women with breast cancer.

At first glance, all three seemed to be a recycle of the same issues and no new really revolutionary findings, but what I saw in these sessions was the ability for the patient to have some control in screening, treatment and even long-term outcomes.

The first session presented data from eight trials looking at various endocrine therapies (primarily aromatase Inhibitors or "AIs") with trade names like: Arimidex, Aromasin and Femara. Each study wanted to examine the effectiveness of different AIs verses tamoxifin or each other or perhaps in different doses over different time periods. The simplified bottom line, to most of these studies, is that that new medicines are not working much more effectively than some of the old standards, and that most AIs can be interchangeable without sacrificing efficacy. This may seem discouraging to those of us looking for the next great cure, but the silver lining in all this is that the old (and often much cheaper) drugs can work for patients. Also, it means that if patients are having issues with AIs, such as joint pain, they can try other AIs and not feel like they are sacrificing their long-term outcomes. This may seem like a step backward, but it is a short-term victory for patients who don't have access or funding for the latest and greatest drugs being offered on the market.

At the session on mammography guidelines, the audience knew it was in for some varied opinions just from the title, "Controversies in Screening for Breast Cancer." I don't think anyone walked into that room naïve enough to think the mammography debates would be solved within an hour's time, but some great diverging opinions (all fairly well supported with various studies) definitely emerged. The one area all seemed to agree on was that WAY more information was needed to assess the whether benefits outweigh the harms for patients, especially those in the 40-to-49 age group, before everyone can feel confident a concrete guideline can be set. The standard for success also needs to show the full range of outcomes including: surgery type, treatment, chemotherapy, node involvement and most often missed, quality of life. Five-year survival rates are not the only outcome that is important.

A question from the audience was very telling, "Can we trust already overburdened primary care doctors to be knowledgeable enough about what constitutes a high-risk patient when guidelines suggest they are suppose to help guide patients through this decision process?" Applause erupted.

At the end of the day, the burden falls to the patient. We are the ones that need to equip ourselves to know our family history, possible genetic counseling and our breast cancer risks. In this day and age, there is little excuse to access of information. A greater concern can definitely be put on the quality of this information, but this problem is one we can solve. The patient has the power to seek opinions to more knowledgeable providers if needed. The patient has the power to ask questions when they are unclear. The patient has the power to contact government programs, local advocacy groups and their insurers to get services if needed. These resources, while often strained, are available and can be a great catalyst to worthy change of the system.

Lastly, a sobering reality on the direction of general health concerns in our country. A session covering three studies looking at the role of obesity, as measured by BMI, and how it affects outcomes in effectiveness of treatment, recurrence rates, disease-free survival and overall survival. All three studies showed that for women who have hormone-positive breast cancer have worse outcomes in several areas. Even when they account for dosage and account for levels of medicine relative to body size, the women who had a BMI of 30 or greater had significantly worse outcomes than those who had a lower BMI.

Of those women who did have a recurrence, their average time of recurrence to death was also shorter. It can be hard not to feel like if you are an obese woman and you are diagnosed with breast cancer that you do not have a death sentence. However, this research has spurred researchers to look very seriously at lifestyle change, nutritional counseling and reducing BMI as a real viable option in helping women reduce their recurrence rates.

This should be looked at as a positive message that women have an issue that they can work at to make a real change in their outcomes. The power is in the patient to make healthy lifestyle choices and reduce their BMI to make a measureable change in reducing their future breast cancer risks. More research is needed in how quickly and to what level these changes can be made to make the most impact on these numbers.

Kathleen "Kat" Werner is a cancer research advocate after being diagnosed with breast cancer at age 31. She travels the country and sits at the table with private and government agencies, fighting for the best treatments for newly diagnosed women and ultimately a cure for breast cancer. She lives is Blacksburg, Virginia with her husband of 11 years, Jeff, and her three young children. Read her blog, "Next Generation Research Advocate."