by Jen Uscher
After a diagnosis of metastatic breast cancer, it may be difficult to grapple with your fears about the future and keep moving forward. You might feel overwhelmed when you’re faced with making decisions about your treatment, managing treatment side effects, and juggling work and family responsibilities.
Many people find the insights and support of others living with metastatic breast cancer particularly useful as they try to find a new normal.
Here, members of Breastcancer.org’s community share the strategies that have helped them cope and live well with metastatic disease.
Don’t hesitate to ask for and accept help
"I would encourage anyone [with metastatic breast cancer] to learn to ask for help. As a mother of four, I have had to learn to let a little bit of control go to make my life easier. Seek help, whether it be meals prepared by others, cleaning services, childcare help, etc."
"I needed so much help with my young family during my treatment, but I was surrounded by many people who were willing to step in and help our family during this stressful time. Extreme challenges often bring out the best in people, and I am forever changed by the love and thoughtfulness of those who prayed for me, took care of my children, brought meals, and visited me."
Talk with your medical team about what they can do to help you feel better
"Side effects of drugs/treatment can be managed. Talk to your doctors. I was so sick with A/C chemotherapy and on the third cycle I finally said something. A few changes and my fourth cycle was amazing. Changes in dosage of Xeloda have helped with my hand-foot symptoms. Be honest about how you feel and see if your team can help make you feel better. Don't be afraid to ask stupid questions. There are none. And don't be afraid to advocate for yourself. Even if it means finding another medical provider."
"It's OK to scream, cry, feel fear, and sorrow. This will pass. You are not going to die tomorrow, next week, or next month. Life will get better, I promise. In the meantime, a tip: To get you over that hump, ask for whatever chemical help you need. If you're in pain, get it controlled. Having trouble sleeping? Ask for sleeping pills. Depressed? Get meds. It's not necessarily for forever, and there's no reason to be stoic about anything."
"While going through treatment that first year, a couple of my doctors kept trying to prescribe antidepressants to me. The drugs made me sick. At one point, I realized I suffered from anxiety, not depression, and a nurse practitioner finally found the right anti-anxiety medication for me: Buspar. I take a mild dose everyday and it literally gave me my life back. Instead of shaking with fear, afraid to leave the sofa, I started moving forward with the every day routine of life. As the saying goes, 'Better living through chemistry.'"
Try to live in the present moment and keep doing things that make you happy
"Live and love each day you have to the fullest. Some days won't be as easy as others and it's perfectly OK to have those days where you just want to curl up in bed and cry. Live, love, laugh, and travel if you can. Do it NOW."
"[Except] for a three month medical leave when I had my surgery and some complications, I have continued to teach first grade, travel, and enjoy my life. In that time, I became a grandmother, danced at my younger daughter's wedding and climbed the Harbour Bridge in Sydney, Australia. And yet, the thought that I have metastatic breast cancer is always there. Not just when I have PET scans or oncologist visits but every day of my life. It doesn't overwhelm me or prevent me from enjoying life, but it has put its shadowy filter over everything. Simply stated, it's there, always there. If this sounds depressing, it's not. It keeps me conscious of making the most of life and cherishing all I have. However, make no mistake, I don't consider cancer a gift (will Nordstrom's take it back?). It is the way I have always strived to live but sped up, because that's what metastatic breast cancer demands."
"I am more thoughtful about how I spend my precious time each day. Teaching my children, and looking for opportunities to help others, brings me a lot of joy. Improving talents, such as playing the piano, and writing, have lifted me. I am currently training for a marathon. Enjoying my marriage and family is my top priority because I believe our family will be together after this life. I will do positive, deliberate things with my time, no matter how long that is."
"We travel a lot. I spend as much time as possible with loved ones, I seek out new experiences and try to continue learning new things." "What helps most is to just keep moving. To keep planning, to have something to look forward to in the future. Something special every day, week, and month."
Seek support from others with metastatic breast cancer
"Reach out and engage with the metastatic breast cancer community. There are lots of resources, blogs/forums/discussion boards, and others who are going through similar emotions and experiences that can help with the initial shock, controlling emotions, and overall well-being."
"As a returning member of [Breastcancer.org’s community], I have learned that people with stage IV still enjoy living AND [are] not afraid to live, work, exercise, travel. I have learned from others about treating side effects from the cancer drugs, about clinical trials, about the many lines of treatments open to me and how to numb that port prior to flushing and blood draws! But most importantly, I see love and support from all the postings that I have read -- through the good and, unfortunately, the painfully sad moments. All of it."
"The most significant support [I’ve found] has been from others traveling the same path. To sit with others who 'get it' and share our greatest fears, laugh and cry has been so important. I have great friends and family, but it has been others with metastatic breast cancer who have been my strength. Family and friends have brought meals, driven, listened, and tried to understand. They have been wonderful. But unless you are wearing these shoes, it is almost impossible to be fully present and understanding. Do not be afraid of making those connections, they will be invaluable."
Read more about ways to live with metastatic breast cancer.
And join the discussion in our forum for people managing the ups and downs of a metastatic breast cancer diagnosis.