What It Means To Be a Breast Cancer Survivor

As of September 2023, there were more than 4 million breast cancer survivors in the United States, according to data from the American Cancer Society (ACS).¹

Every patient’s experience with breast cancer is unique. In this article, 2 women — Cindy and Mary Anne — share their personal experiences as breast cancer survivors. Both Cindy and Mary Anne were diagnosed with breast cancer via routine screening.

Breast Cancer Survivors Share Their Stories

“I went in for a routine mammogram, and that’s how they caught it,” Cindy said. “They did an ultrasound to confirm it was cancer. I tell people, ‘You don’t want to go have these tests, but it’s always a good thing.’ It can save your life.”

The US Preventive Services Task Force (USPSTF) currently recommends breast cancer screening every 2 years for women between the ages of 50 and 74 years.² The decision to start screening earlier should be made on a case-by-case basis, but women with a parent, sibling, or child with breast cancer may benefit from beginning screening in their 40s, according to the USPSTF.

Breast Cancer Screening Importance

Mary Anne has a personal tie to breast cancer in her family and understands the importance of regular screening.

“My mother had breast cancer and passed away when I was 22,” Mary Anne said. “She had a total mastectomy, intense radiation, and some chemotherapy. But it came back and metastasized to her brain and bones. My sisters and I always thought it could possibly happen to at least one of us. That’s why we all got mammograms.” 

“I started getting routine mammograms at age 36 or 37, back in 1985,” Mary Anne continued. “My breast cancer was found during an annual visit. It was very early, very small. I always stayed after my scan to wait for the results, and they said they had seen something. We did a biopsy that day. It was a traumatic day, but at least they did it all at once. That was on a Friday, and the doctor called on Monday to say, ‘I’m sorry, you have breast cancer.’’”

Experiences With Breast Cancer Treatment

Cindy and Mary Anne were both diagnosed with early-stage breast cancer, which can be treated with surgery, radiotherapy, and/or systemic therapy.³

Cindy

Cindy had all 3 treatments. “After my biopsy showed the mass was malignant, I had surgery within a month,” she said. “I just wanted to get it done since I knew we were doing chemo and radiation after that. Now I know that putting it off wouldn’t have made much of a difference, but, in the moment, I wanted to do it. My surgery went well. They did a sentinel lymph node biopsy before surgery, and there wasn’t any involvement.” 

“I said to myself, ‘I need to do everything I can to make sure this doesn’t come back,’” Cindy continued. “My kids were young, and I wanted to be around for them. In the midst of all of this, they sent my tumor out for testing and found that I wouldn’t need chemo. I could have opted not to have it because my chance of recurrence was very small, but I still went through with it. After surgery, I had 4 rounds of chemotherapy.”

“Then, I had radiation, which was 35 total treatments — 5 days a week for 7 weeks. We always joked that it took longer to get there and get prepped than it did for the treatment. I’d completed treatment at the end of 2010, right around Thanksgiving. I went on tamoxifen because I was premenopausal, but chemotherapy pretty much put me into menopause. I thought I was going to be on tamoxifen for 5 years, but then they updated the guidelines to 10 years.”

Mary Anne

Mary Anne underwent surgery and radiation. “I had surgery, and they took several pieces out because they weren’t finding the edge,” she said. “They did a lymph node biopsy as well and didn’t find anything. Afterward, I had radiation therapy. I was very lucky with where I was that I could have treatment 5 days in a row, and then I was done.”

“They did testing and found my cancer was estrogen-dependent, so I took an aromatase inhibitor for 5 years,” Mary Anne continued. “I took one, and it made my blood pressure drop. My doctors didn’t really believe me, but that was one of the side effects I experienced.”

Thoughts on Surgery Choices

Cindy was happy with her decision on surgery, given the information she had at the time and her experiences years later. “I’m happy with my decision to have a lumpectomy,” she said. “Even though I did have a [subsequent breast cancer] scare, I’ve been back for my mammograms, and nothing else has changed.”

Mary Anne questioned her treatment choice, knowing what she knows now. “When I found out I had breast cancer, it was early stage,” she said. “I saw a surgeon who explained to me that the survival rate was the same for a lumpectomy and mastectomy. I had a lumpectomy because it was a small tumor, and the surgeon said that the outcomes would be the same.”

“In hindsight, I don’t know if I would make that same decision again. I might have just had a mastectomy and be done with it.” Mary Anne continued, “I was just barely 50, and, at the time, I was just trying to process the diagnosis. I wasn’t thinking about what would happen down the road.”

Changes After Treatment

Breast cancer treatments can have lasting impacts on survivors, including hypothyroidism, weight gain, and lymphedema, among others.^4-7

Cindy experienced weight gain while taking tamoxifen and began experiencing issues with her thyroid after completing radiation. “The only thing that came from my radiation treatment was my thyroid issue,” she said. “I’m on thyroid medications now for the rest of my life.”

Mary Anne noted that she had to make some adjustments after her lymph node biopsy. “I had a lymph node biopsy on my right breast,” she said. “Now, I can’t have my blood pressure taken on my right arm, and I can’t lay on that side for too long. They told me it was because you can get a buildup of lymph. After 10 years, you’d think it wouldn’t be a problem, but I’m still careful.”

Read more: Breast Cancer Breast Implants

Living as a Breast Cancer Survivor

After patients complete breast cancer treatment, they tend to have frequent visits with their cancer care team for the first few years.⁸ After 5 years, however, follow-ups typically become an annual occurrence.

After their treatments ended, Mary Anne and Cindy continued going to their follow-ups.

“In the beginning, I was going in every 3 months for appointments with my oncologist, surgeon, and radiologist,” Mary Anne said. “The care was amazing. I had an all-women care team. It especially made a difference having the same provider when I had a [breast cancer] scare in 2021.”

Mary Anne, like many survivors, was nervous about her annual mammograms and said she remains nervous today. Her breast cancer scare in 2021 was particularly stressful.

“[T]hey found something on my mammogram,” Mary Anne explained. “I had to go through getting a biopsy and testing all over again. I was pretty emotional. My husband passed away in 2015, and it was traumatic thinking I’d have to go through this again without his support.”

“I had the same cancer doctors and mammogram technicians as before,” she added. “They did a lot of checking in on me, and my oncologist called me immediately with the negative result. I’m very grateful for the care I received with them.”

“It’s very stressful anytime you go for a mammogram,” Cindy echoed. “They call it ‘routine,’ but it never really is. It’s nerve-wracking that there’s always the chance it could return. There’s also a chance you could have another kind of cancer. I hope I don’t have to go through that again, but even now, compared to 13 years ago, there are different options available.”

Making Lifestyle Changes

Research has suggested that breast cancer survivors may derive benefits from certain lifestyle choices.⁹ For example, physical activity has been linked to a lower risk of death among breast cancer survivors.

Cindy said she tries to prioritize exercise. “I was running, but an injury stopped me for a bit,” she said. “I’m trying to get back into it now.”

Mary Anne said she “figured it was too late” for lifestyle changes to make much of a difference. She didn’t quit drinking or make any drastic changes, but she is mindful of her diet. “I try to eat a lot of vegetables, and, as a microbiologist, I always worry about my microbiome too,” she said.

Data on alcohol and breast cancer outcomes are inconsistent, but research suggests that limiting alcohol consumption to 1 or fewer alcoholic drinks per day may lower the risk of a second primary breast cancer.⁹ Diet does not appear to impact the risk of breast cancer recurrence, but dietary saturated fat has been tied to an increased risk of breast cancer death.

Breast Cancer Survivors Can Offer Support & Advocacy

Cancer survivors may find support from other survivors who can relate to their experiences and emotions.¹⁰ In-person and online support groups offer a way for those who have had breast cancer to connect with one another.

Many survivors also find ways to get involved in breast cancer awareness and research via fundraisers and other advocacy initiatives.

“I have been doing walks for cancer research, which I started when I was going through radiation,” Cindy said. “I used to do a ‘Race for the Cure’ every year, and I also helped run a golf tournament one year for the Susan G. Komen fund.”

Read more: Breast Cancer Statistics

This article originally appeared on Cancer Therapy Advisor.

References

1. Key statistics for breast cancer. American Cancer Society. Updated September 14, 2023. Accessed October 9, 2023. https://www.cancer.org/cancer/types/breast-cancer/about/how-common-is-breast-cancer.html
2. Breast cancer: Screening. US Preventive Services Task Force. Updated April 24, 2023. Accessed October 9, 2023. https://www.uspreventiveservicestaskforce.org/uspstf/draft-update-summary/breast-cancer-screening-adults
3. Treatment of breast cancer stages I-III. American Cancer Society. Updated April 12, 2022. Accessed October 9, 2023. https://www.cancer.org/cancer/types/breast-cancer/treatment/treatment-of-breast-cancer-by-stage/treatment-of-breast-cancer-stages-i-iii.html
4. Bodai BI, Tuso P. Breast cancer survivorship: A comprehensive review of long-term medical issues and lifestyle recommendations. Perm J. 2015;19(2):48-79. doi:10.7812/TPP/14-241
5. Falstie-Jensen AM, Esen BÖ, Kjærsgaard A, et al. Incidence of hypothyroidism after treatment for breast cancer-a Danish matched cohort study. Breast Cancer Res. 2020;22(1):106. doi:10.1186/s13058-020-01337-z
6. Ee C, Cave A, Vaddiparthi V, Naidoo D, Boyages J. Factors associated with weight gain after breast cancer: results from a community-based survey of Australian women. Breast. 2023;69:491-498. doi:10.1016/j.breast.2023.01.012
7. He L, Qu H, Wu Q, Song Y. Lymphedema in survivors of breast cancer. Oncol Lett. 202019(3):2085-2096. doi:10.3892/ol.2020.11307.
8. Follow-up care after breast cancer treatment. American Cancer Society. January 5, 2022. Accessed October 9, 2023. https://www.cancer.org/cancer/types/breast-cancer/living-as-a-breast-cancer-survivor/follow-up-care-after-breast-cancer-treatment.html