A strong community can make a world of difference for anyone living with breast cancer. Living Beyond Breast Cancer aims to help make those connections by providing information, community, and support that is reliable and trustworthy for anyone who is affected by breast cancer.
For our Women We Admire series, we spoke with Living Beyond Breast Cancer CEO Jean Sachs about what it’s like working for the organization and a few important facts that breast cancer survivors may want you to know.
What was your path to becoming CEO at Living Beyond Breast Cancer?
I started my career after college working for Women’s Way, a nonprofit in Philadelphia. After a few years, I left for grad school. I then worked on Allyson Schwartz’s campaign; she was running for Pennsylvania state Senate. She won, upsetting a long-time incumbent, and took his seat. I went on to work on her legislative initiatives.
In that role, I worked on a new package of women’s health legislation. Senator Schwartz introduced the Mammography Quality Standards Act, and it passed. Back in the ’90s, there weren’t standard regulations for mammograms. Working on this legislation allowed me to meet many women who were breast cancer survivors and advocates. After doing advocacy work for two years, I found a great way to transition what I was doing to a national level by becoming the first development director for the National Coalition for Breast Cancer, based in Washington, D.C..
I did that for a few years, and then my son was born. Eventually, I got a call from Marisa Weiss, MD, founder of Living Beyond Breast Cancer. She invited me to be the first executive director for the small but growing organization. At the time, it was being run from the third floor of her house but was about to move to a small office and she was willing to give me the flexibility I needed. I’ve been here ever since.
How do you help pave the way for other women who are looking to achieve similar success?
I’ve tried really hard to be a mentor for women who are executive directors in small nonprofits. I help them figure out how to grow and how to have a sustainable organization. At Living Beyond Breast Cancer, I’m trying to help my staff figure out what they want to do next, how to get there, and how to grow.
What advice would you give to your younger self?
Be braver. Be bolder. Be willing to take more risks. I became an executive director at age 33. I would walk into a room, and people didn’t believe I was an executive. I would tell myself to be more confident, take more risks, and know that it’s OK to fail. That’s when you do your best learning.
What’s it like working with people who are newly diagnosed with breast cancer?
The work we do is intense. Women who are diagnosed with metastatic breast cancer have an illness that right now is incurable. We get close to a lot of people and they’re doing well, and then suddenly things change. I try to be that voice of information, compassion, and hope. I try to help them with what they’re facing, and give them information to help them make decisions. I try to be hopeful but also realistic.
What advice would you give someone who has a friend or family member who has been diagnosed with breast cancer?
Don’t wait to be asked to do something, just do something. Stay in touch. A lot of times friends or family don’t know what to do, and they step away. That’s the worst thing to do. People just want to feel normal and feel some connection to their life before cancer. Offer to do things that make sense: drive them to treatment, drop off their kids, bring them a meal, or invite them to do something fun. Step in. Don’t step away.
What’s one thing a lot of people don’t know about living with breast cancer?
Some people think breast cancer is the “good” cancer to get because they see all this pink imagery, along with women running in races and doing well. And fortunately, some of that is true. But we still lose 40,000 women every year to breast cancer.
The treatment for breast cancer really does change the quality of life for a lot of women. Some women are forced into early menopause, or they might experience weight gain, weight loss, energy issues, intimacy issues, and more. There are so many issues that have nothing to do with cancer and everything to do with the treatment.
We don’t often hear about the emotional health of people living with breast cancer. Why is that, and what specific mental health needs do people with breast cancer have?
A breast cancer diagnosis is overwhelming. Anxiety, depression, sleep loss are common. Everyone is different. For some women, once they get a treatment plan, they start doing better. But others struggle the whole time. That’s why it’s so important to connect women with each other so that they feel less alone.
For example, if you’re a young woman, you may not be able to relate to anyone in your community. Or if you’re diagnosed with metastatic cancer, it’s harder to find others like you. Some people do great through treatment, and then they crash afterward because they used all their energy to get through it. All of these things contribute to your mental health.
Patient-doctor communication can be a challenge for menopausal women. Is the same true for those who are diagnosed with breast cancer?
Yes, and for a lot of women, it’s hard to ask questions. It depends on a lot of things. Your age, literacy level, socioeconomic background, all those things play in. Living Beyond Breast cancer can be the bridge by offering support and information, but we can’t be the replacement of the doctor.
Part of it is finding the right doctor. If you feel like you can’t have direct conversation with your doctor, or if you feel like you’re not being taken seriously, that’s a reason to find a second opinion. Go to appointments with a list of questions. Push to understand if you don’t understand something. There are some wonderful doctors and some doctors that are less communicative.
Breast cancer has a lot of faces, including marginalized groups like LGBTQ, and transgender communities. How does your organization help support these groups?
We try really hard to reach all people, including men who get diagnosed with breast cancer. We make sure that everything we write is written in a sensitive, open-ended way. We have programming for everyone, and we have volunteers with diverse experience. It’s something we work really hard at, and we’re not perfect. My staff wants anyone who finds us to be able to find information that relates to them.
What unique challenges do those marginalized groups have?
We know lesbian and trans women go to the doctor less. They don’t always have a gynecologist. We know low-income women don’t go to the doctor as often and may have a lot of other concerns in their life, so breast cancer may not be at the top of their list — as opposed to things like putting food on the table, caring for a disabled child, or housing costs. We can never make assumptions as to what another person is dealing with.
What steps can people take toward early detection?
The hard part is that we still don’t know what causes breast cancer. We do know if you have a strong family history and find out that you have a gene mutation, then there is a clearer protocol for you to follow in terms of screening or prophylactic treatment. For everyone else, we’re not quite sure. I’d say good things to do in general are avoid toxins in your food, cleaning, and beauty products; exercise; keep a healthy weight; and don’t smoke.
The screening guidelines keep changing, and mammograms aren’t a perfect tool, particularly for younger women. You need to talk to your doctor and figure out when the best time is to get a mammogram, and if you’re at high risk to make sure you’re alternating mammograms with MRIs. I wish we had one thing to say, and we don’t.
How can people get involved with Living Beyond Breast Cancer?
They can go to our website and join our mailing list. If you’ve had breast cancer and want to help others, you can be trained as a helpline volunteer, which is peer-to-peer support. We always welcome offers to help raise money, whether it’s through their own DIY effort or coming to our events. We have women that blog for us, women that speak at programs and sit on panels. If you’ve been diagnosed, there’s a lot of ways you can get involved.
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