Marlene McCarthy is a co-founder and volunteer with the Rhode Island Breast Cancer Coalition, the state’s major advocacy group around issues and policies related to the disease. She describes herself as a breast cancer “thriver,” not survivor.
Married for 47 years, with four children and four grandchildren, McCarthy was first diagnosed at age 44 with breast cancer and again 21 years later at 65. She is currently in treatment for metastatic disease.
Providence Business News asked McCarthy to talk about her current work, focused on ending breast cancer by 2020, including researchers’ efforts to develop a vaccine to protect against breast cancer.
PBN: Why have you chosen to become an outspoken advocate on behalf of ending breast cancer?
McCARTHY: Because the medical research community is still not able to identify the causes of breast cancer and produce truly effective treatments that can save a woman’s life.
Women don’t die from breast cancer; they die from metastatic disease, with the cancer traveling to other major organs.
Research needs to more focused on why these cancer cells are attracted like magnets to specific areas of a woman’s body – the brain, the bone, the lung and the liver.
Once the metastatic breast cancer settles in – it’s like settling in to a new condo in the body – the cancer can be treated symptomatically, but it cannot be cured.
It is one of the issues that haunts me personally.
PBN: Recently, former President Bill Clinton signed on to the National Breast Coalition’s efforts to set a deadline to end breast cancer by 2020. What led him to make that commitment?
McCARTHY: When he was president, our organization led a petition drive that garnered 2.6 million signatures, which we delivered to him, asking for specific action on breast cancer research. We delivered those 2.6 million signatures to Clinton in the East Room of the White House, and he gladly accepted them.
Clinton said that he was very impressed with the work of the breast cancer survivor community who are advocates. His mother, Virginia, had breast cancer, and when she passed away, Clinton established a memorial fund at the National Breast Cancer Coalition in her name.
When we approached him about joining our deadline campaign, Clinton said that it was an incredible challenge, but if any advocate group could do it, we could. “You ladies are going to get this done, and I want to support you,” he told us.
PBN: Can you describe some of the work that is ongoing with the campaign to end breast cancer by 2020?
McCARTHY: First, we have first pulled together a team of international scientists and researchers who have studied cancer prevention, including immunology. We brought them together to meet each other and to give them the command: find a vaccine.
We are thrilled that a seed grant from AHS (the College of Applied Health Sciences) has been awarded to help develop that vaccine. We believe that we will have a preventive vaccine, available to consumers, in five years.
The deadline for the polio vaccine was seven years. The deadline that President Jack Kennedy set for putting a man on the moon was a decade. It’s time to put a deadline on breast cancer, and shake up the breast cancer research community.
A second research focus is on metastatic cancer, to challenge the research community to answer: what is the cause? What is the attractiveness that lures the breast cancer cells to go to these specific organs?
PBN: Is there a local component to this work? How is Rhode Island involved?
McCARTHY: We met with Gov. Lincoln D. Chafee in early November, and we asked him to join a national committee of individuals to support the need to pursue this research. He said he would be delighted to join, and he will attend out next meeting in March 2013.
PBN: How does your group view the current disagreement about guidelines breast cancer screening through mammography?
McCARTHY: I am a strong supporter of the guidelines issued in 2009 by the U.S. Preventive Services Task Force in 2009 that recommended women over the age of 50 have mammograms every other year, instead of annual screenings starting at the age 40. They have studied and reviewed multiple international studies looking at the efficacy of mammography screening. Certainly, there is a mixed dialogue among local and national organizations that gain their marketing awareness through mammogram messaging. You will also find medical professionals that feel contrary to the guidelines.
The guidelines state clearly that a woman should discuss her screening schedule with her physician. If she has no risk factors, she can be comfortable starting mammography at age 50 at around her menopause time. If she has risk factors, such as a relative with an early onset of breast cancer, certainly she would want to start her screening at an earlier age.
A mammogram can pick up a cancer that is as small as a little circle you can make with your pen or pencil. And tiny dot has been growing a minimum of seven to 10 years. That is not early detection
Rhode Island needs to move away from pink awareness into advocacy and action. We need to have dialogue with the many researchers – we have a quote a few in Rhode Island who are conducting breast cancer research. We need to engage with them, we need to talk with them about what they should be done in research. We need to ask more difficult questions around clinical trials, around informed consent, and the cost of treatment.
By engaging in advocacy around the disease of breast cancer, we can very successful on all of these issues.
