Updates on Metastatic Breast Cancer

By Kathy Hynes-Kadish

From Mets Matters Blog

My name is Kathy Hynes-Kadish and I'm a ten-year metastatic breast cancer survivor.  I'm a SHARE Hotline volunteer and support group facilitator and an NYU patient.  At the time of my metastatic diagnosis, I was told that my cancer was aggressive, that there was no cure, and that I would be on treatment for the rest of my life.  

But fortunately with the advances in the last ten years in treating HER2 positive tumors, I'm one of the very fortunate women today living longer with no evidence of disease.

If someone had told me ten years ago, after my diagnosis with metastatic breast cancer, that I would be attending the San Antonio Breast Cancer Symposium in 2010 as a patient advocate, I would have thought that the person was delusional.  My only thoughts at that time were how long would I live and how would I deal with the treatment and the side effects.

But in December of 2010, I did attend the San Antonio Breast Cancer Symposium with approximately 8,000 international researchers, scientists, oncologists, drug company representatives, and patient advocates to learn about and discuss the cutting edge breast cancer research and treatments.

It was an extraordinary and overwhelming experience. I was shocked and pleased to note that there were fifteen or more presentations and poster sessions dealing with metastatic breast cancer.

Advocates have been attending the Symposium for many years. In 1998 the Alamo Breast Cancer Foundation, a grassroots breast cancer group in San Antonio, joined with the Symposium and initiated the first advocate program.  The advocate program was designed to increase the dissemination of the latest breast cancer research to breast cancer patients.

Since 1998, the Alamo Foundation has offered scholarships to eligible patient advocates.  One of the ways to become eligible is to join the National Breast Cancer Coalition and take their Project LEAD courses in the basic science of breast cancer, quality care and clinical trials cancer courses.  

SHARE encourages its Hotline Volunteers and Support Group Facilitators to become members of the NBCC and take the Project LEAD courses.
     
The highlight of the patient advocate program for me was the evening mentoring sessions.  Every evening at 5:30 advocates would gather together informally over a light supper and drinks.  This give me a chance to relax and process the day's presentations, and I had the opportunity to speak with other advocates from different organizations across the country and world.  I met a number of metastatic advocates.  Talking with them was very comforting and encouraging, especially one woman who was also off medication and NED and another who had been taking a new drug, TDM1, and was doing well.   

During the second part of the mentoring session, a panel of four distinguished scientists and oncologists provided commentary and explanations on the symposium presentations. 

The panel discussed the relevance of the scientific material and answered our questions. 

What I took away from the Symposium:

• Breast cancer is increasingly being understood through its biological, genetic, and molecular makeup like the ER, PR and HER2 receptors. Apparently, there are thousands of other markers that need to be researched and understood. When this happens it will optimize patient therapy and outcome.
• Metastatic tumors are different. They are not necessarily the same as the primary tumor. Therefore, it is important to re-biopsy at the time of relapse. If possible, your oncologist should re-biopsy to determine if you have changed, for example, from ER positive to ER negative. Noting the change would be important in choosing the proper treatment protocol.
• The most progress has been with the new advances in the HER2 positive targeted therapy drugs. When HER2 positive breast cancers develop resistance in the advanced setting, other targeted therapies can be used, including a combination of Tykerb and Herceptin. A new drug, TDM1, which is a combination of Herceptin and chemo, shows promise. So does the combination of Herceptin and pertuzumab.   
• In the ER positive setting, new combination strategies have been moderately effective. A successful study showed that Falsodex 500 mg proved more effective than 250 mg.
• PARP Inhibitors alone appear to work in BRCA 1-2 associated breast cancer. A phase 2 study using the PARP inhibitor iniparib added to chemotherapy for the treatment of patients with triple negative breast cancer demonstrated low toxicity and had a positive outcome. Phase 3 results of this trial are expected in 2011.

I know it is difficult to think about becoming an advocate when you are living with Stage IV BC. If you aren't able to become an advocate, perhaps a friend or a family member can be your representative.

Becoming an advocate is important for a number of reasons:  

• Educated consumers can communicate better with our doctors and understand our treatment options.
• Trained advocates can be helpful and supportive to peers who are also undergoing treatment.
• Advocates are now welcome on clinical trial panels. We can help steer researchers in the right direction with our first-hand knowledge of what it's like to take chemotherapy and deal with severe side effects.
• And finally, it is important for scientists and doctors to deal with the whole person and not just the cells under a microscope.  

We, the patient advocates, are the faces of breast cancer. Hopefully in the near future, when a patient receives a diagnosis of metastatic breast cancer, the oncologist will be able to say, "With this type of breast cancer we have several targeted therapy drugs that will completely cure you."

Posted January 13, 2011.