Surviving and thriving with metastatic breast cancer

From cancer doctor to cancer patient

Shaveta Vinayak, MD, MS, a former Fred Hutch breast cancer oncologist, kicked off the event with a moving keynote about how she was first diagnosed with early-stage breast cancer in 2011 while training to be an oncologist.

“This is the first time I’m sharing my cancer story publicly,” she said. “I did everything possible with the goal of putting this cancer thing behind me for good. Afterward, I felt like a phoenix coming out of the ashes.”

But in 2022, after she started experiencing shortness of breath, she discovered the breast cancer had returned and was now metastatic. A researcher as well as an oncologist, Vinayak made the decision to leave the clinic and instead do research at the UW Cancer Vaccine Institute.

But it was not an easy transition. She discussed the numerous questions, challenges and fears she faced in a talk her young son titled, “My Big Fat Metastatic Life.”

The audience grew quiet as the former oncologist spoke of her pain having to give up a job she loved (“I felt a very deep gaping hole in my heart”), the challenges of navigating personal relationships (“Don’t try to figure it out if you’re ‘cancer ghosted’ by friends — it’s their problem”) and the importance of “riding out the dark days.”

“Cancer chips away pieces of us,” she said. “But allows us to mold in new ways, like a sculpture,” she said. “I’ve learned that as cancer evolves, so will I. I don’t need to be a cancer warrior all the time — it’s exhausting. I can change as the state of cancer changes for me.”

Vinayak encouraged attendees to find their “anchors,” both externally and internally, to help them get through each day, whether that’s hanging out with family, connecting with friends, going out into nature or exercising.

“Life as I knew it may be over in many ways but through the cracks, new life can be born,” she said. “I think about those pesky little plants that grow through cracked concrete. I love seeing those — it gives me hope as I think about a new life. I still can’t find peace around missing out on my son’s future life. There’s an anticipated loss of time with family that still causes unfathomable gut-wrenching pain. I’m not going to get over that. But grief and gratitude can go hand in hand.”

Managing the financial side effects

Other experts, including Fred Hutch/University of Washington oncologist and health services researcher Christopher Su, MD, MPH, offered pragmatic tips for navigating the financial storm of a metastatic cancer diagnosis.

“People often tell us they feel hopeless, even suicidal, because of the bills,” he said. “They need counseling, but that can produce more costs. We don’t want people borrowing money or depleting their savings for cancer care.”

Su said patients with financial concerns should ask to meet with a designated social worker or patient navigator.

“They’re the hub to all resources,” he said, pointing to additional assistance programs including the Statewide Insurance Benefits Advisors (SHIBA), the Patient Advocate Foundation, the Leukemia and Lymphoma Society, and the prescription medicine sites GoodRx.com and NeedyMeds.org.

Chris Burkhart, a volunteer financial advisor for Consumer Education & Training Services, or CENTS (and a breast cancer survivor herself), said the free program, started by a bankruptcy judge, matches cancer patients with a financial planner who can help them assess their financial picture and recommend potential resources. Family Reach also provides support for those in treatment; likewise, the Northwest Justice Project can be a helpful resource for some.

”There are people who want to help,” she said. “They understand the unbelievable cost of treatment and know that our system is broken. They’ll do everything they can to give you support. You don’t have to do it all by yourself.”

Linda Mihalov, MD, a Fred Hutch/UW gynecologist and certified menopause practitioner, spoke about breast cancer’s oversized impact on sexual health.

Most breast cancers are ER+ which means estrogen-squelching medications are a major part of treatment. Unfortunately, the loss of estrogen causes a raft side effects: hot flashes, night sweats, urinary urgency and frequency, irritation of vaginal tissues, vaginal dryness and loss of elasticity, and as a result, pain with sex.

“Estrogen promotes healthy tissue and the absence of estrogen causes all these symptoms,” she said. “The symptoms can develop even more rapidly with an abrupt drop in estrogen because of chemotherapy, endocrine therapy or ovary removal.”

Luckily, there are therapies that can help reduce these symptoms. Mihalov said it’s important to use a vaginal moisturizer daily, even if you’re not sexually active.

“You would use it on a regular basis, just as you moisturize your skin,” she said. “This can help with vaginal dryness as well as with bladder issues. And coconut oil is fine.”

Lubrication is also key for those having vaginal intercourse (if it’s been a while, dilaters can prep you). Vaginal estrogen — via cream, tablets or vaginal ring — is the most effective treatment, she said, and most oncologists believe it to be safe, even for breast cancer patients.

“The vagina is the only organ in the body that can age backwards,” she said. “If you give a vagina estrogen, it will look younger and the estrogen will not go into the bloodstream. But you should always check with your oncologist about the use of any estrogen.”

Fred Hutch Spiritual Health Clinician Rae Wiseman talked about the importance of spiritual health, whether that comes from a belief in a higher power, faith in yourself (or in others, like your medical team), or from a love of nature.

“All of those roads to faith are important and can give us a sense of peace as we go through challenges in life,” she said. “When it comes to finding your spirituality, some people are traditionally religious, but a lot of us are piecemealing it together. It’s wherever you find meaning and connection — whether that’s out in the garden, while you’re out in nature, while you’re creating art, or spending time  with your children or grandchildren.”

Finding meaning in life won’t just help get through the bad days. Wiseman said studies show people with a sense of purpose have a 30% higher chance of survival.

“Set the stage to connect spiritually,” she said. “Be open to awe and wonder. Be part of something bigger — like a clinical trial. Love and accept yourself as much as possible. The more you take care of yourself, the more you can radiate love, kindness and compassion for others.”

Food and exercise as medicine

Heather Greenlee, PhD, MPH, ND, medical director of Fred Hutch’s Integrative Medicine Program answered questions about food and nutrition as it pertains to cancer.

“People have lots of questions about what to eat after a cancer diagnosis,” she said. “We spend a lot of time debunking myths and helping people to think of food as medicine, something to use in conjunction with physical activity, meditation, mindfulness and integrative medicine.”

Greenlee recommended Fred Hutch’s healthy eating website, Cook for Your Life, for those in search of evidenced-based nutritional advice. The site, run by Greenlee, currently boasts over 1,100 recipes (including gluten-free and vegan), 300 cooking videos and 400 articles on nutrition and cancer.

The site also provides shopping lists, recipes in Spanish and meals designed for those dealing with cancer treatment side effects like nausea, fatigue, trouble swallowing or mouth sores.  

“Does sugar cause cancer? No, it does not,” Greenlee said in response to a question from the audience. “Lots of people have made lots of money from this claim, but carbohydrates and plants have natural sugars and they are very important for our body for metabolic and physiologic functions. We encourage people to decrease sugar intake — especially added sugars — but your body needs it. It’s important to understand the nuances.”

Hanna Hunter, MD, the medical director of Fred Hutch’s Cancer Rehabilitation Program, encouraged attendees to think of exercise as medicine, too.

“Exercise not only helps bone strength, but also heart health and muscles,” she said. “It ripples into so many domains related to quality of life. It improves energy levels, it gives you better sleep, it improves mood, decreases the risk of falling. It allows you to do the things you want to do.”

Exercise studies, she said, show that the ideal goal for cancer patients is not that different than for everyone else: 150 minutes of moderate intensity exercise every week with a bit of resistance exercise (like lifting weights).

And dose is important.

“If you overdo it, you may not reap the benefits,” she said. “Be energy-wise with your pacing. You don’t want to drain your energy tank just to get in some exercise. Find your new baseline and make slow incremental improvements from there.”