Lori Marx-Rubiner: Living with Metastatic Breast Cancer

Lori Marx-Rubiner views research as the key to new treatments that balance control of her cancer with a high quality of life.

For many patients, being a cancer survivor means the life-threatening disease is in their rear view mirror and they’re moving ahead full throttle. 

But to most metastatic cancer patients, “survivor” is an all but meaningless word.

“The word doesn’t work for us,” said Lori Marx-Rubiner, president of METAvivor, a nonprofit organization dedicated to increasing awareness of advanced breast cancer and equity in research and patient support. “Survivor implies that you are done with it; it’s over and behind you. That doesn’t always connect with metastatic patients.”

The reason it doesn’t connect, Lori said, is because metastatic patients live with the reality of their disease every day. Take Lori for example. The METAvivor president was diagnosed with metastatic cancer 13 years ago, when her son was just 3 years old. She is currently on her fourth line of therapy, which means that three previous therapies stopped working.

“It’s something that is always there,” Lori said. “Research is the only thing I have. It’s what is keeping me alive and why I feel so strongly, personally, that research is where we have to invest our dollars.”

METAvivor was founded in 2009 by a women’s support group that wanted to help underwrite research for metastatic breast cancer. After countless yard sales, raffles, and concerts, the women raised $55,000. They offered the money to several existing breast cancer organizations with the proviso that the money fund metastatic research.

“The answer was universally no,” Lori said.

So the group created METAvivor. The name – a combination of metastatic and survivor – is a reminder of the hold their disease has on their lives. And it’s why every dollar raised by METAvivor goes directly to stage 4 breast cancer research.

“METAvivor was founded specifically to meet the demand for funding of research for the already metastatic patient,” Lori said. “We don’t focus enough on prevention of metastasis.”

Lori and METAvivor want to see more funds poured into metastatic research. And the best way to do that is to have researchers, advocates, and patients collaborate.

“I think there is a lot broken in implicit and explicit funding systems for cancer,” she said. “I would love to see an opportunity for advocates and researchers to join together to break that down. I think that is critical.”

It worries Lori that many people assume that breast cancer is curable even though more than 40,000 women in the United States are expected die from the disease in 2015. It’s important to recognize that, as far as breast cancer treatment has come, achieving a nearly 90 percent overall five-year survival rate in the United States, there are still thousands of women like her who fall on the wrong side of those statistics.

She is grateful for the ongoing work researchers are doing, noting that the drug she is now taking has been on the market for only a couple of months. 

Those scientists and the new therapies they develop allow patients like Lori to have real hope that one day metastatic breast cancer will be a chronic disease with a high quality of life and more.

“Real hope is the next treatment,” she said. “Real hope is seeing my son married and maybe holding a grandchild. Real hope is retiring with my husband. It’s the big life things that hold hope for me.”

The AACR was saddened to learn that Lori Marx-Rubiner passed away on Aug. 2, 2017. We are deeply grateful to Lori for sharing her experience with cancer with the AACR and for her tireless efforts to as an advocate in support patients, caregivers, and researchers. Lori was a passionate advocate for cancer research and for increased funding of cancer research. We offer our heartfelt condolences to her family and friends.