Life After Breast Cancer, a Cancer Survivor Story
Written by Melissa Schenkman, MPH, MSJ
It only takes one decision to change the course of someone’s life, and for Brooklyn Cobb that could not be truer.
When her twin sister got genetic testing for BRCA1 and BRCA2—genes that when positive can increase the risk of breast cancer—and learned she was BRCA2 positive, Cobb decided to get tested too. While it was not until a few years later when she was 25, the result was the same. Since the sisters learned that being BRCA2 positive meant up to an 80% increase in their risk of developing breast cancer over their lifetime, they each had to make a choice about what to do. For Cobb, instead of opting for a preventative mastectomy, she chose annual MRI screenings of her breasts.
Three years later, she was diagnosed with breast cancer at age 28 in March 2020.
The journey of battling breast cancer
Breast cancer is the most common cancer in all women in the United States, and about 9% of all new cases are found in women under the age of 45, according to the Centers for Disease Control and Prevention. In 2023 alone there will be an estimated 353,510 women diagnosed with a new case of breast cancer, which means about 31,815 of those cases will be diagnosed in women under the age of 45.
In Cobb’s case, she never had a symptom or sign that she observed herself, but her annual MRI screening came back suspicious for cancer-like activity. After a biopsy a week later, she was diagnosed with Stage 0 Ductal Carcinoma In Situ, also known as DCIS, with breast cancer confined to her right milk duct.
DCIS is an early stage of breast cancer in which the cells lining the milk duct they are in have become cancerous but have not spread through the ducts’ walls to actual breast tissue, and its typically cured.
“I saw two doctors who confirmed the same thing and that brought me to have a double mastectomy,” Cobb said. “In surgery, they found several micro tumors all less than 5mm in size that imaging did not pick up, so I was upgraded to Stage 1b breast cancer and that completely changed my treatment plan.”
Challenges of Breast Cancer Treatment
When breast cancer is Stage 1, like Cobb’s, it is still relatively small and has either not spread to the lymph nodes or is only in the sentinel lymph node (the first lymph node in a chain of lymph nodes).
The main treatment for Stage I breast cancer is surgery—breast-conserving surgery (lumpectomy (removal of a breast cancer lump) or partial mastectomy (removal of part of the breast) or mastectomy (removal of one breast). Your lymph nodes will also need to be removed if your surgeon finds cancer in them. Some women choose to undergo breast reconstruction surgery at the same time. Although, others wait until after if they are also going to undergo radiation therapy, a treatment that lowers the chance of the cancer coming back.
Side effects from breast cancer surgery, like Cobb’s double mastectomy, can include pain, tenderness, or swelling at the site of surgery, buildup of blood or clear fluid in the wound, and limited movement of your arm or shoulder. For women who undergo radiation, they can experience side effects of fatigue, skin irritation similar to what you would experience with a sunburn, and swelling of the breast. It’s also possible to have a feeling of numbness in your chest or upper arm, and nerve pain (a burning sensation) in the chest wall, armpit, or arm on the same side as your surgery (also known as post-mastectomy pain syndrome).
While Cobb received chemotherapy, and after that hormone therapy because her type of breast cancer was hormone-receptor positive. No matter how small the tumor is, if its hormone-receptor positive, doctors will recommend hormone therapy (tamoxifen or an aromatase inhibitor) after surgery.
People undergoing breast cancer treatment face many physical, emotional, and psychological challenges, as a result of their life-saving treatment. Physically, there is the change to your body’s appearance, scars from surgery, and hair loss from chemotherapy.
Cobb in the days following her breast cancer surgery, a double mastectomy.
One of the things that can make this treatment so emotionally and psychologically challenging for young women is its potential impacts on intimacy and fertility at a time in life when women are of child-bearing age. This leads to having to make decisions with long-term effects when you may not have ever even thought about whether or not you wanted to have children or when, at that point in your life.
“A big area for me as a woman was how it all would affect my fertility,” Cobb explained. “I had to consider egg freezing, embryo preservation, a timeline with my partner at age 28, and we had never needed to have those conversations before.”
It also turns out that her tumors were feeding off her body's estrogen supply, so she was put into medical menopause for 5-10 years after her chemo ended. That meant she was basically brought into menopause about two decades before it would naturally start in her body. So, all of the sudden Cobb was put into a position where she had to face menopause symptoms, such as hot flashes, vaginal dryness, and loss of sexual desire.
“We were told we could take a break for a short window after two years for family planning and that was if we were lucky,” Cobb said. “My breast cancer diagnosis really impacted my relationship from that standpoint, along with all the other side effects of medical menopause that can be difficult in a relationship, especially from an intimacy standpoint.”
Given such enormous challenges at such a young age, women often times can face anxiety, anger, sadness, and even depression. That’s why having a solid support network throughout your cancer journey is crucial to helping you cope with its challenges.
Navigating Relationships with Friends and Family During Breast Cancer
Friends and family are a critical component of your support system and can be a life-changing source of lifting your spirits, especially when you are at your lowest. However, sometimes as well-meaning as they can be, their idea of what is helpful may be very different than yours.
When Cobb reflects on life during her diagnosis and treatment, she wishes that her friends and family had understood that there was a lot of pressure placed on her to always be "strong."
“I didn't feel I had room to grieve my situation and express how I was truly feeling because all I heard was ‘You're so strong,’ ‘You can do this,’ and ‘Just be positive.’ It was overwhelming trying to “look" like I wasn't as sick as I was to make sure everyone else around me kept it together,” Cobb recalled.
She advises friends and family members to do the following to best support people during treatment:
“Don't ask ‘How can I help?’ Offer helpful things such as setting up a meal train, helping with groceries or laundry, taking kids for a day, or taking them to appointments, and let them tell you “Yes” or “No.”
Don't stop checking in on them because they are "sick" right now.
Avoid comments such as “You don't look sick" or comments that endorse toxic positivity.
Give them space to truly vent about how they feel and just listen.
Life after breast cancer: Embracing survivorship
When Cobb rang the bell—as all cancer patients do after their final treatment—she celebrated reaching the milestone of making it to the finish line for her breast cancer surgery and chemotherapy. But like many, she quickly learned that survivorship brings with it a new set of challenges and responsibilities.
There is the emotional toll looking back at all of you have been through, the physical scars from treatment to process and live with long-term, side effects from ongoing medications that you may need to take, and redefining what your identity looks like and is going to be moving forward. There is also a new sense of responsibility to help other breast cancer patients and to increase awareness and knowledge about the disease.
As a cancer survivor, Cobb wants fellow millennials and others to keep in some things in mind because as she told us, “It doesn’t end when chemo ends.”
“There are so many other battles involved in cancer survivorship that is a whole other beast such as survivor's guilt and fear of recurrence,” Cobb said. “Don't ditch your friends because they had cancer. Still invite them to get together and check in on them when you can. Let them tell you what they can do.”
Nurturing emotional well-being
It can take years after completing treatment for someone to adjust to their new title of “cancer survivor.” This is why taking care of your mental health after cancer treatment is just as important as it is during your fight.
Cancer recurrence (having a cancer come back), is a common fear amongst breast cancer survivors, but the fear is more intense in younger women. In a study published in the journal Cancer of more than 900 women who had been diagnosed with breast cancer at age 40 or younger, 61% of had a moderate or high fear or cancer recurrence at diagnosis with their fear improving over the years. Also, approximately one third of those young women’s fear of cancer recurrence was severe and either did not improve or got worse in the five years following their diagnoses.
Everyone manages their anxiety, fear, and dealing with uncertainty differently. Some find regular exercise helps them to cope. For others, group counseling with other breast cancer survivors can help provide emotional support, as they also learn from others’ experiences.
In fact, receiving psychological support has been shown to also positively impact patients physically. In a study of breast cancer patients who attended psychologist-led small group sessions that offered strategies for reducing stress and improving mood patients who participated, had a 45% lower risk of breast cancer returning and a 56% lower risk of dying from the disease.
From one cancer survivor to another, Cobb advises fellow young cancer survivors to manage their health by taking these steps:
Listen to your body. If something feels wrong and you feel dismissed by your doctor, get a second opinion.
Stay on top of your screenings and appointments.
Talk through your insurance plans with HR at your job to make sure you are getting the best plan that makes sense for you.
Get a trauma and grief therapist that specializes in working with cancer survivors and use them during and after active treatment.
Rediscovering identity and purpose
For people ages 20-42, much of your identity is defined by what you do for a living and whether or not you are in a relationship, and if you are a parent. Breast cancer treatment can change that for a while because of its side effects. So, when you get official word that you are now a breast cancer survivor, it can take time to figure out what that means for you both in your role at home and in the outside world—at work and in social situations.
When Cobb returned to work, was she met with colleagues whose perception of her was that she was still sick and couldn’t do anything anymore.
“I wasn’t offered as many opportunities for things as I was in the past and was often overlooked for projects,” Cobb said. “I didn’t know how to approach that conversation with my boss, but she frequently told me she wanted to make sure I was taking it easy.”
After her experience, she would encourage you, if you faced the same situation as she did, to have a conversation with your boss early on, before your first day back at work, so that expectations regarding what you can and cannot do are already set.
When it came to being in new social situations and meeting new people, she would share her professional work and survivorship upfront.
“I always include in my one-liner that I am a survivor of cancer and a proud one at that. I think you never know who you might encourage or inspire by sharing your story, so it is important for me to do so,” Cobb said. “Also, I share that I'm an advocate for the breast cancer community following my diagnosis.”
Empowering others and giving back
Advocating and supporting others affected by breast cancer is a responsibility Cobb and other cancer survivors feel, and there is no shortage of opportunities to do this. There are great opportunities to volunteer with, include the Young Survival Coalition, Susan G. Komen Breast Cancer Foundation, and National Breast Cancer Coalition. She also encourages friends of breast cancer survivors to be ally for their community.
“There are so many ways one can be an ally, but it starts with you,” Cobb told me. “For breast cancer, it may look like staying on top of self-breast exams and encouraging your loved ones to do so too, or donating to brands who are working to find a cure!”
As a cancer survivor, she empowers fellow millennials to think about these four things when it comes their own health:
Everyone should be proactive with their health regardless of their age. If I wasn't proactive with my genetic testing, I would have never found out I had a gene that increased my cancer risk to even start doing annual testing and catch my cancer early before it metastasized.
Your health starts with the health of your family. Ask your family questions about their history before you have health issues and take that with you to your doctor so they can recommend the best screening plans for you. I learned about my family's history only after being diagnosed with cancer and then family members started sharing their health details.
If you have a family history of cancer, ask your doctor about genetic testing. It saved my life and is an easy way for you to be proactive with your health.
Cancer is not an "older person's disease" and there are increasing amounts of millennials being diagnosed. Stay on top of your health and screenings as early as your 20s! You should be doing self-breast exams every month!
Lastly, if you have been through your own cancer journey or have friend who has had early-onset cancer, please share your story. Telling your story to others will help you to be an advocate for change by bringing awareness about cancer in millennials and younger generations.
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