From MBC Patient to MBC Advocate

New York resident Victoria Goldberg has been a metastatic breast cancer (MBC) patient advocate for 7 years. She was initially diagnosed with early-stage cancer in 2004, triple-positive with HER2/PR/ER receptors. Victoria has been living with MBC since January 2014, when a CT scan showed that her cancer had returned and had spread to her liver and bones.

Victoria's journey with MBC advocacy

Like many patients, side effects from the disease caused her to re-think the future. Not ready for retirement, Victoria saw advocacy as a way to replace the structure and purpose of her previous job as a technology manager at an investment bank.

She volunteered on a breast cancer helpline at SHARE Cancer Support in 2017. She later moved on to become the founder and manager of TalkMets, SHARE's dedicated helpline for people with metastatic breast cancer.

Victoria graduated from the National Breast Cancer Coalition's (NBCC) Project LEAD in 2018, where she gained knowledge of the latest breast cancer science and research. 2 years later, she joined her friend Lisa Laudico to produce the podcast Our MBC Life.

Sharing experiences with metastatic breast cancer

Following Lisa's passing, Victoria now manages the podcast and has become a perceptive and empathetic interviewer. She is also an editor and writer of the Our MBC Life blog.

Her Facebook page includes quirky memes and dash-cam car-chase footage, while her YouTube channel tells her story. Victoria's comment struck me:

"How do we live our life to the fullest if we are alone, broke, can't stand the town we had to move to, and I'll be dead by the end of the year anyway? I'd do anything to be able to travel or even just have a friend, even one."

In conversation with Victoria Goldberg

Victoria never forgets she's living with advanced breast cancer but insists, "It's no longer at the forefront of my life."

I was at Project LEAD with Victoria in 2018 and was struck by her smarts and curiosity. Amazingly, she has followed her advocacy path, and I'm so pleased she agreed to this interview.

Metastatic breast cancer diagnosis experience

Rod: You've had a successful career in investment banking. How hard was it to give this up?

Victoria: Almost 10 years ago now, in January, I was diagnosed with metastatic breast cancer, which came as a complete shock after having been cancer-free for 9 years. I had just gotten a big promotion at my bank (JP Morgan Chase) that was incredibly hard to get. This feeling of pride and accomplishment was short-lived.

A week later, I found out that I had advanced stage 4 metastatic breast cancer with tumors in every lobe of my liver. I was highly symptomatic, and continuing my stressful and challenging work on the trading floor was simply impossible.

I had been working for 25 years, and my identity was tightly linked to my career in a difficult, male-dominated environment. Without my career, I no longer knew who I was.

Initially, my life was dominated by illness. It took me almost 2 years to adjust to this and the medical treatments I was going through. It seemed that for these 2 years, everything in my life was put on hold.

I wasn't living; I was surviving. As things started to return to "normal," I felt that although I had strong emotional support from my family, many of the fears and concerns I was experiencing could only be properly understood by people in the same situation as I was in.

Providing educational and emotional support to others

Rod: For every thriver, someone is doing it tough. What can you possibly say to someone who has failed their last line of treatments?

Victoria: This is a very difficult question. As you know, I've been living with this disease for almost 10 years now, and I have come across many people in our community.

The type of advocacy I do (emotional support and education) makes it impossible for me not to face the reality of so many of us living a much shorter life than expected.

The treatments are improving, and the FDA is approving the new agents, but the average survival for many MBC patients is still pretty abysmal. Needless to say, I often experience survivor's guilt.

I feel that the only help I can offer is by providing a safe space by listening and accepting a patient's decisions about the future. That is not to say that I do not research the latest trials and look for the so-called "hail mary" options.

Optimistic for treatment advancements

Rod: You talk with so many brilliant medical professionals. How hopeful do you feel about the chance of finding a cure for breast cancer?

Victoria: Even though I just said that the average survival rates for MBC have not improved dramatically, I am excited and optimistic about the future.

20 years ago, I was diagnosed with the most aggressive breast cancer with the poorest prognosis. 20 years later, my subtype is the one to have.

10 years ago, while I was waiting for my liver biopsy results, I asked my amazing oncologist if it would be better for my prognosis if my results came back as HER2 positive. He said, "No."  I'm quite sure he would not say that now, with the 2 effective antibody drug conjugates and more coming.

There are even ongoing trials to see if it is possible to discontinue treatments for a portion of the patients. So, we are beginning to use the c-word (cure) for metastatic breast cancer.

The future is still challenging for the triple-negative subtype. Even there, PARP (poly-ADP ribose polymerase), check-point inhibitors, and 2 approved ADCs (antibody-drug conjugates) are adding more viable treatment options.

The first steps to becoming a patient advocate

Rod: MBC patients are often unsure how to become advocates and wonder when they are ready to take on advocacy. What's the best way for patients to get started?

Victoria: A good question. Last season, we did an entire episode of the Our MBC Life series on this very topic, "MBC Advocacy: Finding Purpose in Adversity." I would say developing relationships and connecting with others is how we get started.

In my case, the first step to my advocacy was joining a support group for MBC patients and making a friend who was an active patient advocate. She then introduced me to the folks at SHARE Cancer Support. But before that, you need to identify what kind of advocacy you want to get involved in.

Running support groups or volunteering on the helpline may not be what interests you, but fundraising for research or calling for change by lobbying the legislature is.

Identify people who are doing what you are interested in and try to get to know them. First things first, listen to the podcast episode to get sound and practical advice on how to get started.

What's your metastatic breast cancer story?