Mind and Body

Marlene McCarthy wants to change the conversation about breast cancer

A talk with the advocate for the national campaign that has set a deadline of 2020 to end the disease and create a vaccine

Photo courtesy of Marlene McCarthy

Breast cancer research advocate Marlene McCarthy

By Richard Asinof
Posted 7/23/18
Marlene McCarthy, the co-founder and director of the Rhode Island Breast Cancer Coalition, is an advocate for the campaign to end breast cancer by 2020, focusing on research to develop a vaccine.
When will the advocacy efforts of Marlene McCarthy to end breast cancer by 2020 attract the media attention it deserves? When will Rhode Island businesses move beyond fund-raising to promote pink ribbons and awareness to backing research efforts to develop a vaccine? Which candidates running for President in 2016 will make advocacy for breast cancer research a top priority?
One of the undercurrents in the debate over the legalization of marijuana in Rhode Island and the use of medical marijuana is the problem that the federal government regulates marijuana as a Schedule 1 drug, with no medical value, making it impossible to conduct independent research on the potential benefits of the drug, including the apparent cancer-fighting traits of cannabidiol, one of the cannabinoids in the marijuana plant. Changing the federal designation from Schedule 1 to Schedule 2, which will take an act of Congress, will open up a wellspring of new research to determine the potential benefits and detriments of marijuana use, moving beyond anecdotal claims to an evidence-based science.

Editors Note: One of the most stalwart advocates in Rhode Island fighting for more, better research on breast cancer, Marlene McCarthy, died last week.

ConvergenceRI had the honor of talking with Marlene on numerous occasions, who despite battling metastatic breast cancer, always was a positive force, unafraid to challenge and question how resources were being spent.

In her honor, ConvergenceRI is republishing an interview conducted in May of 2015.


PROVIDENCE – Recently, I spent some time talking with Marlene McCarthy about breast cancer. For those of you who do not know Marlene, she is a fierce advocate, educator and survivor of breast cancer. The co-founder and director of the Rhode Island Breast Cancer Coalition, she knows that awareness alone will not save women and men from this disease.

“I’m inspired to reach beyond the status quo, and to never be satisfied until I know that my granddaughters will never have to worry about being diagnosed with breast cancer,” she told me.

She is also a breast cancer survivor, with metastatic breast cancer, first diagnosed when she was 44 years old, and then had her first recurrence 21 years later.

What Marlene is excited about these days is the work of the National Breast Cancer Coalition. They’ve set a deadline for 2020, at which time they will know how to end breast cancer. Clearly, the only way to end this epidemic is to make sure no one gets it. The group is working on a vaccine for breast cancer.

[The National Breast Cancer Coalition held its 2015 annual leadership summit in Washington, D.C., this past weekend, with the advocacy goal to envision a world where no one gets breast cancer and no one dies from it.]

What a thought! No more toxic treatments, because no one will need the treatments.

Changing the conversation
As an advocate, Marlene’s mission is to change the conversation about breast cancer. For her, raising awareness with everyone she talks to is key; but she also insists on talking about ending the disease.

I was curious about some of the myths surrounding breast cancer – and specifically about mammograms, since it seems that every other year the American Cancer Society comes out with new recommendations.

Women are encouraged to get regular mammograms, leading many to think that they will save lives.

The truth is that mammograms do not save lives; treatment does. What mammograms can do is to detect disease before symptoms occur.

According to McCarthy, when a mammogram detects breast cancer, the tumor has been growing for at least 10 years.

In fact, she asserts that mammography has not led to a significant decline in the incidence of late stage disease, but has led to over-diagnosis and over-treatment.

The actual time to begin screening mammography for women before the onset of menopause should be discussed with a physician to assess the risk factors.

For first-degree relatives with pre-menopausal breast cancer, mammography screening should begin 10 years before the age of the relative when diagnosed.

The myths of breast cancer
I asked Marlene about some of the myths surrounding breast cancer. I certainly held a few. Here is her list of myths:

 • You need a family history of breast cancer to be diagnosed.

Men don’t get breast cancer.

Everyone’s breast cancer is the same.

For survival, it is better to remove the entire breast and not just take out the cancer tumor (lumpectomy) followed by radiation.

There are drugs that can prevent breast cancer.

Prophylactic mastectomy removes all risk of getting breast cancer.

Second opinions are only for treatment options (Fact! Start right away with 2nd opinion i.e., for pathology, surgical option, treatment choices.

There is a treatment to cure breast cancer.

Once diagnosed, it is critical to make treatment decisions immediately.

The media accurately reports breast cancer research and science.

All breast cancer research is good, because it moves toward prevention and cure (my personal favorite myth).

Advocacy
I was also curious to know more about Marlene’s advocacy. I love what she has to say – particularly that many awareness activities annoy her.

When she sees the R.I. State House lit in pink, Marlene wonders how many mammograms would be paid for instead with those funds.

She particularly has no use for carnival-like activities of awareness events, since she knows that there is no part of treatment for breast cancer that is fun or frivolous.

And, as many of us know, the pink-ribbon campaign was begun by a pharmaceutical company to promote their breast cancer drug.

Marlene and I share the same criticism of the NFL and their wearing of pink to raise awareness. If the NFL cares so much about women, perhaps their policies towards players who beat their wives would be a lot stricter.

“I assure you that a pink ribbon has never saved a life,” Marlene said, "but maybe it has improved the bottom line of a corporate budget." She feels strongly that we need to change the conversation from awareness to how do we prevent breast cancer, and what can be done to stop death from the disease.

When asked about the American Cancer Society, Marlene expressed disappointment in the organization. She feels they could be doing so much more with their influence, and that they are too cautious and too political, failing to demonstrate support for evidence-based medicine.

One example of this is with the studies on mammography screening and prostate screening PSA test. The American Cancer Society markets their own message, even though there is no evidence to support their comments, according to Marlene. As a result, their fundraising activities seem to be front and center.

Before donating, Marlene said that people should consider that only 26 cents of every donated dollar goes to research for the disease. Still, Marlene continued, the American Cancer Society does a fine job convincing family and friends that they are making a difference when they donate so they can walk for a cure for breast cancer.

Setting a deadline to end breast cancer
Marlene wanted everyone to know more about the Artemis Project. About five years ago, a group of representatives from various breast cancer organizations decided they could no longer wait for the next scientific breakthrough, and that they were no longer going to rely on hope for a cure. The group held a press conference and announced a deadline on breast cancer.

They developed the Artemis Project, whose goals are: to develop a breast cancer vaccine; and to know how to stop metastases. They invited scientists from around the globe who were experts in various areas of research. The Artemis Project asked these individuals to leave their silos and join with their peers to actually participate in ending breast cancer. What a revolutionary idea!

Five years later and halfway to their goal, the Project has seen some progress. The vaccine work is quite promising. Understanding why breast cells travel to specific organs to invade and ultimately kill is being better understood every day.

This all happened because women with breast cancer and advocates have become more than activated. They’ve actually become fed up with the slow pace of research, so they truly took matters in to their own hands, planning and executing this effort.

Their hope is that even if they are not alive in 2020, their granddaughters will only know about breast cancer through history books. What a wonderful notion and tremendous goal.

Stay tuned for more information about The Artemis Project and the work of the Rhode Island Breast Cancer Coalition.

But especially stay tuned to hearing more from Marlene McCarthy. She’s not done yet.

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