Tag: metastatic breast cancer

Advanced Breast Cancer: How It Affects You at Work
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A diagnosis of metastatic breast cancer doesn’t mean you have to quit working. But you might find it easier to manage everything that comes with your condition when you’re not also concerned with work.

There’s no right or wrong answer. It’s a personal choice that depends on many factors. Here’s what to consider when making the decision, and how to make it work if you decide to stay at your job.

To Work or Not to Work

“Many with advanced breast cancer still work and maintain their family life with amazing ease, even with regular appointments and sometimes ongoing outpatient intravenous therapies,” says Rebecca Crane-Okada, PhD, director of Cancer Navigation & Willow Sage Wellness Programs at the Margie Petersen Breast Center at Providence Saint John’s Health Center in Santa Monica, CA.

Working may help you feel grounded and productive. It may be a good distraction and give you a sense of power when other parts of your life feel beyond your control. But if your job feels like too much to manage on top of your treatments and symptoms, you may decide to take a break or not return to work.

To Share or Not to Share

Who you tell and how much you share is up to you.

It may be helpful to tell your boss. If your manager knows what’s going on, they may be able help by extending deadlines, changing meeting times, or letting you work from home. You can come up with a plan together.

If you need work accommodations like regular breaks or a flexible schedule, you’ll have to share some information with your human resources department. Your human resources department and supervisor are legally required to keep your medical information private. But they may have to tell their managers.

There may be benefits to sharing with your colleagues. They could be a source of emotional support and help you manage your work better.

Marlena Murphy, 45, who has metastatic breast cancer and is an advocate for TurningPoint Breast Cancer Rehabilitation in Atlanta, GA, decided to share her cancer diagnosis at work so she could balance her work with her treatments.

“The main thing for me was to communicate with people I work directly with, regarding treatment and medical appointment dates,” Murphy says.

Sharing with co-workers can have drawbacks. They may pepper you with questions about your health and treatment. You may get unwanted medical advice or opinions. And they’re not required to keep whatever you share to themselves.
How to Find Balance

How you feel and how you manage at work may change on a day-to-day basis.

On some days you may feel energetic, like you can handle anything. On other days, you may feel tired or struggle with symptoms like fatigue, nausea, constipation, diarrhea, and muscle or bone pain. Try to let your body be your guide.

When you feel tired, take a break. If your job is physically demanding or you’re on your feet a lot, you may need regular rest breaks. Modifications like moving your desk closer to a restroom or working from home can help you find balance.
Getting Help at Work

There’s a lot you can do to make it easier to work while managing advanced breast cancer.

For example, if you’re in the middle of treatment, ask your boss if you can set your own hours. It may help to shift your working hours to times in the day when you have more energy and will be more productive.

Consider adjustments like:

Compressed work weeks

Flexible hours

Regular breaks throughout the day

Remote work

Shorter schedule

If you need extended time off, you may want to use sick leave.

If you’re going back to work after being out for a while, ask your boss if you can ease back into work with shorter or fewer days. Ask your co-workers to bring you up to speed on anything you missed, like new systems or procedures that started when you were out.
Know Your Rights

You may be entitled to several types of support while managing advanced breast cancer. Here are a few to look into:

Americans with Disabilities Act (ADA). This requires your employer to make adjustments like shorter work hours, a modified work schedule, or reassignment to an open position. It also protects you from discrimination, so you get the same consideration you’d have without cancer.

Family and Medical Leave Act (FMLA). This requires your employer to give you up to 12 work weeks of unpaid leave during a 12-month period. You can also use it if you’re a caregiver for your spouse, child, or a parent with a serious health condition.
Employee Assistance Programs. These programs offer help with personal issues that may affect your ability to do your job. For example, they may help you with financial and emotional concerns.

Disability policies. If advanced breast cancer prevents you from being able to work, you may qualify for short-term or long-term disability insurance. These policies may give you 40%-70% of your base salary. Short-term disability may be about 3-6 months. Long-term disability starts after short-term disability ends.

Talk to your human resources representative about what you qualify for and how to start the process.

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March 10, 2023
How to Find Support and Community for Advanced Breast Cancer

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When Sandy Cassanelli of Glastonbury, CT, was diagnosed with stage IV breast cancer 8 years ago, her first phone call was to the one person she knew would understand: a close friend who also had metastatic breast cancer.

“She answered all of my questions and gave me hope,” says Cassanelli, who’s now 47. “She was the only woman I knew who had metastatic disease. If I hadn’t reached out to her right away, I would have gone onto the internet and read all sorts of statistics predicting I wouldn’t make it through the next 5 years. But she told me right away not to do that. She said, ‘don’t view it as a death sentence.’”

Cassanelli is busy today raising her two daughters and running the Breast Friends Fund, a nonprofit charity where 100% of funds raised go directly to metastatic breast cancer research. One reason why she thinks she’s survived — and thrived — is all the social support she’s had over the years.

“I’ve made so many connections over the years with truly amazing women,” she says. “While sadly, I think I’ve lost more friends than I’ve made, their journeys have also given me strength to carry on.”

Overall research suggests that those with more social support may have better quality of life after breast cancer treatment. But it’s less clear how social support affects survival. One study looked at more than 2,800 women diagnosed with breast cancer. Those who reported that they felt socially isolated were twice as likely to die from the disease as those with stronger social networks. One reason is because they may not have had the benefit of caregiving from friends, relatives, and even children. But experts also say that connecting with others is an important form of self-care.

“A diagnosis of metastatic breast cancer is forever: there’s no magic cure and it means a lifetime of scans every 3 to 6 months,” says Jean Sachs, chief executive officer of the nonprofit organization Living Beyond Breast Cancer. “Many women resist a community at the beginning because they are so focused on treatment. But they need the social support of others, particularly other women who have gone through similar experiences, so that they can become their own effective health advocates.”

Connecting With People Who Get It

Your health care team will offer medical advice, and your family and friends will offer caretaking and emotional support. But people with metastatic breast cancer say that connecting with women who have had a shared experience is key.

“There is no better support than the support of someone living with the same life-threatening illness that you live with,” says Tami Bowling, 49, a metastatic breast cancer survivor who lives in Scotch Plains, NJ. “They understand the severity of the diagnosis. They get the heartache you feel about mourning the life that you thought you would have, but they also share the same desire to make the most of every day. There’s a special connection there that you won’t find with anyone else.”

Natalie Hyman, 46, a metastatic breast cancer survivor who lives in Kailua, HI, agrees. “When you are given a terminal diagnosis, it brings up a lot of emotions that you may not be comfortable sharing with close family and friends,” she explains. “It feels liberating to speak to other women who understand. It’s also very helpful to share our stories about the different treatments we’ve tried, and our experiences with physicians. Knowledge is power. The more we share with each other, the more we feel the confidence to advocate for ourselves.”

Getting this social support early — within days or even hours of a diagnosis — is critical, says Abbey Kaler, a nurse navigator at the Advanced Breast Cancer Clinic at MD Anderson Cancer Center in Houston, TX. “It’s life changing to know you have metastatic breast cancer, so (people) need to be able to understand what that means, not just for themselves, but for their immediate family,” she says. “The presence of social support is pivotal in terms of being able to process this diagnosis.”

It may also help you make life-lasting memories. Soon after her diagnosis, Cassanelli remembers participating in a fashion show with others to raise money for breast cancer research.

“The first time I met (them) was the day before the fashion show. We spent the next 48 hours together, and really bonded. It felt so empowering walking down the runway with other women who were also fighting the same disease. There were ten of us originally, and now we are down to three. But we all keep in touch,” says Cassanelli.

How to Find Your Breast Cancer Community

Ask around. Kaler says the first step is identifying a medical provider you feel comfortable talking to. “It can be anyone on your health care team: a doctor, a nurse, a social worker, or a nurse navigator,” she says. Then ask them for resources to help. The cancer center where you are being treated may have a formal support group for those with metastatic breast cancer, or they may be able to connect you with someone in the area.

You can also reach out to organizations such as the American Cancer Society, Living Beyond Breast Cancer, CancerCare, or METAvivor. Many of these groups also have social media pages on platforms such as Facebook or Instagram where you can connect with others. In October 2022, Bowling herself organized #LightUpMBC, a global campaign that benefits METAvivor to shine a light and raise funds for metastatic breast cancer research.

“It was so inspiring to connect with women around the world with the common goal to educate and raise funds for research,” she says. “There’s a fearlessness and a passion among all of us who live with metastatic breast cancer, and a recognition that we are all united in fighting for our lives.”

Attend breast cancer conferences. Most now offer online options where you can join virtually, listen to speakers, and connect with other metastatic breast cancer survivors. Hyman has found many members of her tribe this way.

“Living Beyond Breast Cancer has a wonderful online conference that I’ve attended the last couple of years,” she says. “I’ve not only met women from all over the country, but I’ve met women who live near me that I’d never have crossed paths with otherwise.” Last year, Hyman connected with another survivor who happens to live in her condo complex. “I introduced her to our local metastatic breast cancer support group that she hadn’t yet connected with,” she recalls.

Lean on family and friends as needed. Even though they may not be able to understand exactly what you’re going through, they are there to support you.

“My rock throughout this has been my younger sister, Alli, who has come with me to every single cancer scan over the years,” says Bowling. “Since we have to go into New York City, we make it as pleasant as we can: we have dinner the night before at a nice restaurant, stay the night at a friend’s apartment, and then the whole next day we’re at the hospital doing blood work and bone scans.”

Pay it forward. Sometimes, when you are grappling with metastatic breast cancer, it’s all you can do to take care of yourself. But during those times that you’re up for it, reach out to other people with metastatic breast cancer, too. “One of the most important things you can do to give back is simply to share your story with others,” says Bowling. “It’s cathartic for you, and it gives other women hope and also the realization that they’re not alone.”

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March 10, 2023
Tips for Navigating Metastatic Breast Cancer
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Learning you have metastatic breast cancer (also called stage IV or advanced cancer) can be overwhelming. You’re having to process your diagnosis and figure out what’s next.

That’s where nurse navigators and social workers come in. They can help with everything from managing treatment side effects to explaining your bill and finding financial aid. Their roles are distinct, but there’s some overlap. Here’s how they make your treatment journey a little easier.
What does an oncology nurse navigator do?

Oncology nurse navigators are registered nurses (RNs) with special training in cancer care. They can help you:

Better understand metastatic breast cancer and your treatment options

Manage side effects like nausea and pain

Learn more about clinical trials (studies on drugs that haven’t been approved yet) and find out if you’re eligible

They can also refer you to nutritionists, physical therapists, mental health professionals, and other resources.
What does a social worker do?

Social workers can:

Help with mental health concerns

Explain billing and insurance issues

Connect you with resources like transportation to and from treatment

Help you understand work-related issues like short-term disability

Review and renew applications for financial grants to help pay for things like medications.
How do I find financial support?

Social worker Malia Opat and nurse navigator Kayla Terrell are part of an interdisciplinary team at The University of Kansas Cancer Center. Their group includes dietitians, financial navigators, and psychologists.

When someone has financial concerns, doctors can refer them to Opat, who helps them sort through what’s available and where they can bridge the gaps.

“One of the things I do is to see if (people with metastatic cancer) qualify for Social Security disability,” Opat says.

Some people might also have access to short-term disability or Family Medical Leave Act (FMLA) options through their employers. There are local and national grants people can apply for, as well as gas cards and drug discounts — all of which can make a huge difference.

Opat also lets people know about places like Hope Lodge, which offers free lodging when treatment is far from home. Run by the American Cancer Society, there are more than 30 Hope Lodges around the U.S.
Where do I get educational and emotional support?

One of the challenges with any diagnosis is knowing what questions to ask. Terrell recommends resources like the National Comprehensive Cancer Network (NCCN).

“It gives (people) sample questions that they may want to ask when they see their doctors,” Terrell says.

Terrell helps people take care of their emotional health by referring them to Turning Point, the cancer center’s free program for people with cancer and their families. They can learn healthy ways to manage cancer’s mental and social impact.

Navigating cancer can be especially challenging when you’re trying to run a household and hold down a job. This is where telehealth plays a role.

“People with young children really find telehealth visits to be a big help,” Terrell says, because they don’t have to leave the house or find childcare during that time.

If you’ve been diagnosed with metastatic breast cancer, ask the doctor about pairing you with a nurse navigator or social worker.

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March 10, 2023
Advocating for Yourself With Metastatic Breast Cancer
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With advanced breast cancer, it’s important to speak up for yourself. This is called self-advocacy, and it involves making your views, needs, desires, and interests known.

Self-advocacy not only leads to better care, but it can turn feelings of hopelessness and helplessness into hope, empowerment, and healing.

Here’s how to advocate for yourself with advanced breast cancer.

Educate Yourself

Learn as much as you can about advanced breast cancer.

“Knowledge is power,” says Diana Abehssera, a breast cancer survivor and patient experience lead for Leal Health.

Educating yourself makes it easier for you to make informed decisions about your treatment, which may lead to a better outcome. Start with your doctor. Ask questions about things you don’t understand. Do research online. Visit websites for nonprofit organizations like the American Cancer Society, National Coalition of Cancer Survivorship, and Susan G. Komen.

Learn about your treatment options. “Advanced, cutting-edge treatments may be available to you, some of which may be outside of your normal hospital setting,” Abehssera says.

Advocate for Yourself at Your Doctor’s Office

“Be a partner to your doctor in your health care decisions,” says Abehssera. “During cancer, the stakes are high, and you should absolutely have a say in your treatment plan.”

Try these tips for self-advocacy with your doctor:

Take notes before appointments. Organize your thoughts. Jot down a list of questions. Be ready to communicate.

Speak up at your doctor’s office. Ask questions, take notes, and speak up if you don’t understand something. Be clear about your needs, preferences, thoughts, and feelings.

Seek out second opinions. This is especially important if you have a complex case.

Be open to new treatments and clinical trials. Finding the best care may mean participating in a clinical trial, which can give you access to cutting-edge therapies.
Know Your Body

Knowing your body is an important step in taking care of it and making sure you get the care you need. Keep a symptom diary. If you have new symptoms that don’t get better in a couple of weeks, or if you feel like something is wrong, talk to your doctor.

Talk to Family and Friends

“Family members are affected by your diagnosis, too,” says Rebecca Crane-Okada, PhD, an advanced oncology certified nurse in Santa Monica, CA. “Sometimes the whole family needs to get together and talk about changes that will make things better for the whole.”

Your closest friends and family members are an important part of your well-being and care, so it’s important to speak up about what you need.

“Be as clear as possible about what kind of support you want and from whom you want it,” says Louise B. Lubin, PhD, a clinical psychologist in Norfolk, VA, and author of Your Journey Beyond Breast Cancer: Tools for the Road.
Try these tips to get support from friends and family:

Accept help. Remember that people generally want to help and helping feels good.

Be specific about what you need.

Make a list of tasks they can do for you.

Let them know if you need physical, emotional, or spiritual support.

Ask one person to be the designated communicator who shares updates with others.

Ask for help with chores like childcare, cleaning, cooking, and grocery shopping.

Keep a calendar with all your appointments and things you need help with.

It may help to have family counseling sessions. “Remember, cancer is a family affair,” says Lubin.
Speak Up for Yourself at Work

If you choose to work, you can make things smoother by speaking up for what you need. Talk to your manager or human resources department. Maybe it’s a flexible work schedule or an alternating schedule that helps you create a better work-life balance, says Crane-Okada.

You may need accommodations at work. Find out what you’re entitled to and how to get them by talking to your doctor and learning more about the Family Medical Leave Act, short-term disability, and long-term disability.
Take Care of Your Financial and Legal Needs

Advocating for yourself also means getting organized, making decisions, and planning for the future. When you have your affairs in order, you have more freedom to focus on what’s really important to you.

Do you need to file for disability insurance? Do you need a trusted family member to pay your bills, follow up with insurance, or take care of your other accounts?

Talk to people who can help you put things in order, like a disability expert, financial expert, estate planner, or lawyer.

Carve Out Time for Yourself

Taking care of your desires and needs also means enjoying things that make you happy.

“Making time for family, fun, and things you find enjoyable is just as important as making time for treatment and follow-up visits,” says Crane-Okada.

Prioritize joy by doing the little things that make you feel better. Take yourself out to your favorite coffee shop. Pick up a bunch of your favorite flowers. Go the park. Being outdoors, especially in nature, can help you feel good.

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March 10, 2023
Pictures: Embracing My Body After Being Diagnosed with Metastatic Breast Cancer

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By Deltra Kroemer, Caryn Sullivan, and Ann Gootee, as told to Keri Wiginton

How have you adapted to your diagnosis over time?

Deltra: After my initial shock wore off, I knew I wanted to focus on living, not dying. I wanted to make meaningful connections, both with those around me and those in the cancer community.

Caryn: I’ve embraced it. I was diagnosed with metastatic breast cancer around the same time Disney’s Frozen was in theaters. When I heard the princess sing “Let It Go,” I started crying, feeling that was a mantra I should embrace.

Ann: This is not a linear journey. There are ups and downs, progress and setbacks. Patience is needed and often hard to come by. And most days require an afternoon nap.

What makes you feel better on your hard days?

Deltra: Journaling and connecting with others. Knowing I’m not alone helps me so much.

Caryn: Little things have always made me smile, whether it’s watching Days of Our Lives, cuddling on the couch with my son, or sitting at the beach watching the water. And my son and I created “The Grateful Game” so we can focus on what we’re grateful for each day.

Ann: Prayer and chats with one of my closest friends or family members. Walks in nice weather help as well.

Is there anything that’s easier to do after your diagnosis?

Deltra: I’m a queen of self-care now. I don’t guilt myself for resting, nor push myself to do more.

Caryn: I seldom wear a bra, and I love it.

Ann: I can be ready in no time flat when I get out the shower. I don’t have to dry and style my hair. And I don’t have to worry about my eyebrows anymore because I got microblading.

Has cancer changed how you think about your body in any positive ways?

Deltra: My diagnosis initially made me feel that my body had betrayed me. But now I speak love and life over my body daily. I am in awe of how strong and capable it is. I’m more aware that this is the only body I get. I embrace it, pamper it, and enjoy it.

Caryn: I started to find physical beauty in other parts of my body other than my hair or chest, which were what I once considered my finer features.

Ann: Not really. But I laugh when people ask me how long it takes to get ready. With chemotherapy and hair loss, I can get ready quickly.

Is there anything you used to worry about that you’ve since let go?

Deltra: I don’t worry so much about what my body looks like, as I’m too concerned with what’s going on inside of it. I certainly don’t worry about what other people think of how I choose to live my life.

Caryn: Cancer — both the first and second time — brought me clarity. When in the midst of cancer decisions, it was easy to let go of things I couldn’t control and focus on what I could.

Ann: Weight gain! Many medications and treatments can cause weight gain. And I used to be very active; I worked out 5 days a week. Over time, my workouts became long walks, and only on days when I have the energy. I continue to maintain a healthy diet, but I can’t fret over a few pounds.

Are there any changes you’ve made to your body or life that you wouldn’t have before your diagnosis?

Deltra: I’ve rejected negative body talk and thinking. I’ve stopped putting things off that I want to do. And I’ve reevaluated relationships and let go of those that weren’t only not serving me, but they were damaging me.

Caryn: I embrace wellness wholeheartedly. I eat plant-based, sleep longer nights, exercise regularly, and include small mindfulness practices in my day.

Ann: I try to continue with a healthy diet and do as much physically as I can.

How has your perspective on life changed?

Deltra: I’ve stopped living like I have all the time in the world. I think everyone does this too much.

Caryn: I take care of myself holistically, meaning not just one area of wellness but many. And I value a healthy lifestyle because that is something I can control when it comes to healing.

Ann: I’m more aware of the importance of relationships with my spouse, family, and friends. I’m quicker to say I love you at the end of conversations, and not just to my husband and stepchildren. I have best friends who we never hang up without saying I love you.

What advice do you have for someone who’s just learned they have metastatic breast cancer?

Deltra: Breathe, feel your feelings, cry it out. Then lift up your head and lift up your voice. Advocate for yourself and connect with the cancer community. They understand exactly what you’re going through, and their advice can be a lifesaver.

Caryn: The practical advice I’d give is to make sure you get a second or even third opinion, even if you like your doctor. I learned so much from having my cancer conversations many times.

Ann: Take a deep breath and learn all you can about this disease. Become your own advocate. If you want a second opinion, don’t hesitate to discuss it with your doctor. This is your body and your life.

What advice do you have for a friend or family member of someone with metastatic breast cancer?

Deltra: Respect and support the choices your loved one makes for themselves. And don’t burden them by saying to reach out if they need anything. Just jump in and be a help. Find and connect with support groups for you, too.

Caryn: Know your audience, aka think about what the patient would want. Be proactive and come up with ideas on ways you can help. At the same time, pleasantly offer but don’t push yourself on them.

Ann: Stay in touch and offer your support. But let the patient determine what and when they want to tell you about their diagnosis, treatment, and progress. I’m glad to share my journey with this disease. However, I’ve learned from some of my fellow support group friends that they hold this information much closer.

Is there anything else you want people living with metastatic breast cancer to know?

Deltra: I’ve learned to appreciate the little things and be incredibly present because I don’t know what the future holds. I’ve realized that experiences and connecting with other humans are the most important things in this life.

Caryn: I try to live with a loving stance. I want to be around people I love, do activities I love, and hopefully showcase how, if we focus on goodness and positivity, we can find happiness through any hardship.

Ann: If you can find a support group for MBC, I’d recommend you join. It really helps to talk with others who have been diagnosed with this disease. Finally, try to maintain a sense of humor. It helps you and those around you to lighten the situation at times.

About Deltra: Deltra Kroemer, 34, was diagnosed with metastatic breast cancer in 2019. Kroemer is an ambassador with For the Breast of Us, a website and community for women of color affected by breast cancer. She lives in Waterbury, CT.

About Caryn: Caryn Sullivan, 47, was diagnosed with metastatic breast cancer in 2013. Sullivan is the founder of the website Pretty Wellness, author of the book Happiness through Hardship, and host of a podcast with the same name. She lives in Fairfield, CT.

About Ann: Ann Gootee, 68, was diagnosed with metastatic breast cancer in 2019. Gootee lives with her husband of 37 years in Glen Ellyn, IL.

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January 18, 2023
I Am More Than My Medication

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By Susan Rahn, as told to Lauren Evoy Davis

I was diagnosed with metastatic breast cancer in August 2013. It was exactly 9 months after a clear mammogram. I didn’t find a lump or even suspect that I had breast cancer. Back pain sent me to the doctor and eventually led to my shocking diagnosis. Thanks to my primary care physician not assuming I was OK when a urinary tract infection (UTI) was ruled out, she ordered more tests that uncovered the source of my pain. I had a significantly sized tumor in my thoracic spine as well as lesions in my ribs. Testing ultimately confirmed it was breast cancer that had metastasized to these bones.

No Evidence of Disease

My initial treatment was radiation to my spine, followed by an aromatase inhibitor. It’s a drug that stops your body from making estrogen, which fuels cancer cell growth in some types of cancer. That was short-lived, as the side effects were unmanageable. My doctor switched me to another aromatase inhibitor for women who’ve gone through menopause. I took that for 18 months, then stopped to have a lumpectomy (removal of cancerous breast tissue). I was then given my current treatment: Faslodex and Ibrance. This combination — along with a lot of luck — has kept me with no evidence of disease for almost 7 years. Eventually, I had my ovaries removed because the cancer I have is fueled by estrogen.

How I Advocate for Myself

Advocacy can mean different things to different people. I advocate for myself by staying informed of the latest advancements in treatment options and I go over every test, scan, and lab and ask questions even if I am told everything is fine. Conferences connect me with medical professionals who speak on a variety of helpful subjects.

Most importantly, I communicate things that have changed to my care team since previous appointments — even if I don’t think it is anything important. Open communication with my care team is very important to me. Over time I learned it’s OK to ask your doctors “why?” instead of following blindly. It’s OK to ask for clarification when I don’t understand something.

Managing Side Effects With Exercise

I had a difficult time with the first two drugs I was on. My joints and bones felt stiff and painful. The one thing that has helped is to keep moving. I participated in a program called Livestrong through my local YMCA. It’s a 12-week program designed to promote physical activity in people diagnosed with cancer. When it was first suggested to me, I was shocked. It already hurt to move and now I’m supposed to move more? But it taught me that the more active I am, the less pain I am in. Now I do exercises at home to stay flexible.

Finding Mental Health Resources and Outlets

What I didn’t know then but learned over time is that although doctors are focused on treating the illness, mental health cannot be ignored. I have an incredible palliative care team that I see monthly. I see a therapist through palliative care, who specializes in patients with advanced illnesses. She has helped me manage survivor guilt and being stuck at home during the height of COVID-19. Writing has helped tremendously. I started a blog a year after I was diagnosed. Whether I’m sharing health updates, accomplishments, or advocacy events, writing helps clear the thoughts that sometimes keep me up at night. It’s been a great tool over the years.

Connecting With People Who Get It

There are plenty of social media groups, specifically closed groups for people with metastatic breast cancer. I joined a few after I was first diagnosed, but they weren’t for me. Now, almost 9 years later, I would recommend organizations like Living Beyond Breast Cancer. Their website has resources for all people with breast cancer — men and women — who are in and out of treatment. They offer one-on-one peer support through their support line. You can be matched with another person with a similar diagnosis or they can help you find resources in your area. I cannot emphasize enough how helpful it is to talk to someone who knows exactly what you’re going through. Unless you’re knee deep in it, it is difficult to relate to what we experience as a metastatic patient.

I knew absolutely nothing about metastatic breast cancer when I first heard my doctor say those words. If I could go back and tell the newly diagnosed me what I know now, I would tell her she’s not alone, even though it may seem like she is. I would tell her that there are a lot of people like me and that I should connect with them. I am grateful for the countless individuals I have met over the years. I became very close to a few and even traveled (pre-pandemic) with people I met along the way. Each person I have crossed paths with has taught me something, even if I didn’t realize it at the time.

Making Time to Rest

A lot of people living with metastatic breast cancer don’t look sick. I often have to remind family and friends that I am not always 100% and need to take time to rest. Giving myself a bit of grace makes life easier. It’s OK to turn down invitations or decline an outing. Those who matter will understand. I realize that living with my condition for 9 years is a gift. I don’t take it for granted and I make myself available for anyone who needs advice or who needs to vent. I strive to be the person I wish I could have gone to that first year.

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January 18, 2023