Finding Community When You Have HER2-Low Metastatic Breast Cancer

If you’re living with HER2-low metastatic breast cancer, you’re not alone. From support groups to survivorship programs, financial assistance, social workers and an abundance of online resources, there’s no shortage of community support for anyone living with this condition.

Palliative medicine specialist Nivia Ruiz, MD, says searching for community support is one of the most important things you can do early on after receiving a diagnosis of metastatic breast cancer. Not only will community support help you see what’s possible with treatment and learn from other’s experiences, but it will also provide you with a safe space to share your own experiences and find opportunities for self-care.

Dr. Ruiz breaks down a few ways community can benefit those living with metastatic cancer and how to break the ice.

What we know about HER2-low

HER2-low metastatic breast cancer is a relatively new designation for breast cancers that have low levels of human epidermal growth factor receptor 2 (HER2) proteins. Like with HER2-positive breast cancer, these proteins are responsible for breast cell growth and repair but are present in much lower levels. Until recently, these HER2-low designations had previously been considered HER2-negative, meaning they weren’t always considered treatable using targeted therapies.

Research into HER2-low is new and ongoing, but already, the future expectations for potential treatment options are high. This is an exciting time for discovery, and clinical trials are already underway to determine the effectiveness of new and novel treatments that could have a real impact on the way HER2-low breast cancers progress and spread.

Participating in clinical trials is often a decision that’s made when other treatment options are unavailable or not working as well as you’d expect. But many who are living with cancer find that participating in clinical trials gives them a sense of purpose and hope as they work with others in the community to assist with ongoing research. In many cases, participating in a clinical trial might even connect you with those who share similar experiences to your own.

“Clinical trials can give someone a sense of what options are still available to prolong their life, especially those who are looking to buy more time,” notes Dr. Ruiz.

“It’s important to ask your oncologist about any potential clinical trials in your area and in what stage the clinical trial is to see if you would benefit from it. Some clinical trials that are in last phases may have some data into overall survival and life prolongation. Some initial phase clinical trials are experimental, and some people are interested in being able to participate so other people can have a better chance at survival. This gives someone a sense of empowerment, that they are able to assist science and other people in the future.”

Connecting to the HER2-low metastatic breast cancer community

Outside of clinical research, there are many other ways to connect with the community of people who are living with HER2-low metastatic breast cancer and the wide variety of people and organizations who working to support you on your journey.

Some common ways to connect with the community include:

• Your cancer care coordinator or navigator: You’ll likely be assigned to a cancer care coordinator or navigator who functions as your first point of contact for anything you need across various institutions. They can help connect you to educational and financial resources, networking opportunities, social support groups and more.
• Social workers: Social workers are an excellent resource for connecting you to support groups and networking opportunities with people who are living with cancer and have been impacted by cancer in the past. They can also assist with transportation to and from appointments and provide therapy.
• Cancer survivorship programs: These programs are designed to help anyone impacted by cancer, from the point they receive a diagnosis and beyond. Survivorship programs can connect you with others who are currently living with cancer, as well as other resources and networking opportunities while you’re in treatment or recovering. The American Cancer Society, for example, has an extensive 24/7 cancer survivors network and an online pairing opportunity via a web-based app for people to connect with others who have breast cancer.
• Helplines: Living Beyond Breast Cancer is a national nonprofit that runs a helpline you can use to connect with others who have lived with and are living with breast cancer. By having compassionate conversations with their volunteers, you can gain insight into any part of the experience and their journey. Another number to keep on hand, particularly on days when you might be feeling low, is the 988 Suicide & Crisis Lifeline. Calling 988 will connect you with a trained counselor who can talk to you confidentially about any mental health concerns, anxiety or depression you may be experiencing, at any stage.
• Online forums and support groups: If you’re not much of a public speaker or you’re a little on the shy side, online forums and online support groups may be more your speed. Both Living Beyond Breast Cancer and the American Cancer Society have online support. Dr. Ruiz also recommends SurvivorNet as a wealth of information where survivors share their stories regularly. You can also search for ongoing clinical trials and stay up-to-date on all things newsworthy in the cancer field.

“Every person is different, so finding other people’s stories and seeing what they’ve done that they found helpful that you can integrate into your own life can be a great resource,” encourages Dr. Ruiz.

“That kind of information can be really helpful in the beginning, especially when you’re feeling really grim about your diagnosis and you’re looking for answers on how your life will be different now that you have cancer.”

Strategies for building better connections with others

Connecting with others isn’t always easy, especially when it comes to something as serious as a cancer diagnosis.

“People don’t always want to talk about it either because it causes some anxiety or they feel their diagnosis is a burden they have to carry by themselves,” recognizes Dr. Ruiz.

“But talking to somebody about how you’re feeling and what you’re going through, even if it’s somebody you know and love or a new friend you can trust, can help alleviate some of those anxieties around your diagnosis. It helps knowing other people have been and are living in similar situations as you are right now, too.”

If you’re hesitant about making connections or don’t know where to start, these strategies for building bridges with others who’ve been in similar situations as you can be helpful.

Give yourself space

Finding out your cancer has metastasized can feel really heavy, and it’s something that often takes a bit to process. Take some time to understand your diagnosis, talk to your healthcare team about any questions you have about HER2-low metastatic breast cancer, and give yourself the space you need to recognize what’s happening to you and your body.

“Recognizing when something is bothering you and recognizing that something is happening to you is the first step toward asking for help,” says Dr. Ruiz.

Be patient with yourself

Healing is never linear. That means there will be days when you feel good about your accomplishments and days when you feel less good. Sometimes, activities will come easier to you, and other times, you may not feel up to much of anything. At every turn, it’s important to be kind to yourself and do whatever you can to manage your symptoms, provide yourself comfort and experience moments of joy when you’re feeling up to it.

“It’s good to recognize that there will be good days and there will be not-so-good days — and it’s the not-so-good days that tend to be most difficult because that’s when we tend to get depressed, when we don’t eat and when we want to give up,” empathizes Dr. Ruiz. “On those days, it’s important to focus on your goal and try to always achieve those goals. Do whatever makes you feel good on those days and then recognize tomorrow’s a new day with a fresh start.”

Ask for help when you want it, and enjoy your alone time

“Reach out to whoever you feel most comfortable if you want to,” advises Dr. Ruiz. “Some people feel they need time to themselves, and that’s OK, too. If you don’t want to meet with family or talk to anybody and you need a day off to recover from socializing, then take a day off to be by yourself and read a book or listen to some music. It comes down to thinking about what you don’t do in the moment when other people are around and making the most out of that time you have alone.”

Connect with a social worker

“Social workers are trained in psychotherapy and behavioral therapy, so they can work with you on how to start dealing with a lot of these things on their own and help deal with a lot of anxieties and panic attacks if they come up for you,” shares Dr. Ruiz.

Join a support group online or in person

Once you feel grounded and supported in who you are and where you’re at with your HER2-low metastatic breast cancer diagnosis, it can become easier to reach out to others who share similar experiences and/or share your own stories about what you’ve gone through.

Online forums, online communities, survivorships and support groups are great resources for community support and connection. “You have to find something that makes you feel comfortable and safe,” notes Dr. Ruiz. “It’s not easy, but it’s a process. Once you trust that process, connecting to other people about what you’re going through becomes much easier.”

Why it’s OK to be vulnerable

At a time when you perhaps feel most vulnerable, you may wonder whether or not you should be vulnerable with other people you don’t know. Sometimes, even vulnerability with loved ones can be hard when you’re dealing with a difficult diagnosis.

But when you have empathy and compassion for yourself and others who are caring for you, allowing open and honest communication about how you’re feeling in your body and mind and what you want out of the life you have can actually be quite empowering and motivational.

“Sharing your experience with others can help those people navigate their experiences a little bit better and perhaps find other resources that maybe they weren’t aware of. And sometimes it works the other way,” says Dr. Ruiz.

“Sometimes, you need to listen to what other people have gone through to kind of get a sense of light and what’s doable so that you can modify their stories to your own experiences. At the end of the day, it all comes down to your will to live and what you can do and want to do with the time that you have.”