6 Things Women With Metastatic Breast Cancer Want You to Know
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Metastatic breast cancer (MBC), also known as stage 4 breast cancer, is a form of cancer that spreads beyond the breasts to other parts of the body, which typically include the lungs, liver, bones, or brain.
There have been nearly 300,000 new cases of breast cancer in women in the United States this year, the American Society of Clinical Oncology (ASCO) estimates. Around 5 percent of people are initially diagnosed with stage 4 breast cancer, while 30 percent of breast cancer cases eventually metastasize, according to METAvivor.
While metastatic breast cancer is considered incurable, according to the American Cancer Society (ACS), there are treatments available that can help with certain symptoms, while helping those diagnosed with the disease to live as long as they can. That’s something Heather Tucker, 29, wishes she knew when she was first diagnosed.
“Being metastatic, to me, was scary only at first, when I was reading all the misconceptions and click bait — that it’s ‘the scariest,’ it’s ‘the most extreme and severe cancer,’ ‘there is no cure.’” Tucker says. “And I guess those things are true, but that is no reason to be afraid. My oncologist and my radiation oncologist have always had hope for me. And I’ve had success in treatment, just like any other cancer, metastatic or not.”
Here are six things women, including Tucker, who’ve been diagnosed with metastatic breast cancer want you to keep in mind while dealing with the disease.
1. Positivity Can Be the Best Medicine
For Aleta Phelps, 53, staying positive, despite being diagnosed with metastatic breast cancer in March 2021, helps her focus more on her life and less on her diagnosis.
“There are many days when I feel weak, and I have a high level of severe pain throughout my entire body,” Phelps says. “I take my medicine for pain and treatment, but I never feel 100 percent pain free, so the positiveness helps with the leftover pain remnants.”
Some studies suggest that being optimistic and keeping a positive attitude can lead to a better quality of life for people diagnosed with cancer, even if it doesn’t necessarily change a person’s chance of survival or the course of their disease, according to the ACS.
“I am not suggesting that you deal with having MBC in an unrealistic manner,” Phelps says. “But you should not forget the joy in your life, and that you should use that joy to live out your life.”
2. Don’t Let Cancer Stop You From Living
When Shannon Vick, 43, was first diagnosed with metastatic breast cancer in 2018, she was terrified. She thought her doctor would tell her to get her affairs in order, but after discussing different treatment options and ways to extend her clinical outcome, she realized her life was not over. She spent four years fighting MBC, and while she continues chemotherapy, there is no evidence of active disease in her system.
“I sometimes try to look at this diagnosis as a gift rather than a curse,” Vick says. “Not because I don’t hate cancer, or because I don’t feel robbed of aspects of my life, or my future, or my children’s future, but because we have a chance to really see what matters in life and look at each day, each year, each new treatment, as a gift.”
3. Be Your Own Advocate
When Tucker was first diagnosed with breast cancer, the doctors found it in an unexpected place — the cancer had metastasized to her back.
“My back was broken. I was extremely sick, so I went to urgent care thinking I would get some fluids and maybe some meds,” Tucker recalls. “It turns out, there was cancer in my spine releasing that calcium into the blood as it ate away at my back.”
While her doctors wanted to address the cancer first — which would have involved more mammograms, scans, and biopsies — and focus on her back later, Tucker decided she wanted radiation treatment to help with the pain she was feeling. In people with cancer that has spread to their spine, radiation therapy may be used to relieve back pain, according to a study published in the Global Spine Journal. Tucker discussed the matter with her radiation oncologist and was able to receive radiation therapy sooner rather than later. Following her treatment, Tucker received surgery for her back and started chemotherapy soon after.
“Advocate for yourself,” Tucker advises. “Talk to your doctor about all options — there are so many! I’m sure there are some that I don’t even know of. If something doesn’t work, try something else. Just never stop trying.”
4. Find a Source of Support
Tucker says she’s blessed to have a strong support system, which includes her mom and aunt, who have been with her from the beginning. For those who may not have the same type of support, Tucker recommends seeking it out elsewhere.
“There is a lot of support out there,” Tucker says. “The American Cancer Society, for one, has Hope Lodges, [where] you can stay [during] treatment, [and] they have a Survivors Network, if you just need someone to talk to.”
Support groups and counseling can help people diagnosed with cancer manage anxiety and depression, cope with treatment and its side effects, and navigate the healthcare system, according to the ASCO. If you aren’t sure where to start looking for a support group, your cancer care center may be able to offer you some guidance. You can also do your own research online. There are organizations — like the ACS, METAvivor, and National Breast Cancer Foundation — that offer either virtual or in-person meet-ups, which you can filter based on your location, type of diagnosis, and cancer stage.
5. Advancements in Medicine Are Made All the Time
Three years into her diagnosis, Vick’s treatment stopped working for her. By the fourth year, she struggled to find a regimen that would help at all, she says. “By the end of year four, I thought I was a goner — the cancer had spread to my liver, lung, and many bones. But then I started a new drug, fresh on the market. It’s been a whole year, and now I’m NED (no evidence of disease).”
“Research is leading to more and more breakthroughs that are allowing [those diagnosed with] metastatic cancer to have more years of living, which means there is definitely hope,” Vick says.
In one recent clinical trial, led by Rachel Freedman, MD, and Nancy Lin, MD, it was found that a combination of two oral medications — capecitabine (Xeloda) and neratinib (Nerlynx) — may be effective in treating patients with HER2-positive breast cancer that has metastasized to the brain.
6. This Isn’t the End
Phelps says she refused to believe that her diagnosis meant that she would have to limit herself and stop investing in her life.
While she says she does acknowledge that it’s important to make certain lifestyle changes, such as adopting better eating habits and building a nutritional mindset to stay as healthy as possible, Phelps says she doesn’t view the disease as a be-all-and-end-all. “MBC does not have to be a death notice, but can instead become an eye-opener,” she says.
Vick came to the same conclusion early on in her treatment. “I was told by my medical team when I was first diagnosed that it was no longer a death sentence, but more of a treatable condition nowadays,” she says. “That’s the biggest thing I want to pass on to others. It is not the end, but rather a new path.”
Resources We Love
If you want to learn more about metastatic breast cancer, resources and breast cancer support are readily available.
American Cancer Society (ACS)
The ACS provides resources and research on early cancer detection, and can provide information on cancer prevention and risks. On their website, you can also find more information about their Hope Lodge, Survivors Network, a 24/7 cancer hotline, and several other patient programs.
Centers for Disease Control and Prevention (CDC)
The CDC offers comprehensive information about breast cancer in a variety of forms, including video. It provides facts on topics, including triple-negative breast cancer, early onset breast cancer and its risks, what it means to have dense breasts, and more. The My Motivated Moment podcast on their website features stories about personal experiences with breast cancer.
HERConnection
This free HER2-positive breast cancer support system provides treatment information, financial assistance guidance, and tips for a healthy lifestyle. On their website, you can sign up to receive materials and information tailored to your specific treatment plan.
METAvivor
This organization offers support for people diagnosed with stage 4 breast cancer. They have a peer-to-peer support group, as well as leadership training for those who want to start their own support groups and other support resources.
National Breast Cancer Foundation (NBCF)
NBCF offers free scanning and diagnostic services, help with navigating the healthcare system, and the opportunity to attend weekend retreats for patients living with late stage breast cancer. Their support groups also provide a safe space to share your story with others who can relate to your experience.
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