Our Baddie x 2 series is an intimate moment in time grasping the interaction between two baddies as they discuss being diagnosed, survivorship, and everything that comes in between. We hope that you enjoy this series and that it sparks a dialogue amongst the breast cancer community.

Interview With Breast Cancer Survivor, Shehzin Tietjen, as told to Baddie Ambassador Keneene Lewis

When I arrived in Atlanta, members of the breast cancer community eagerly recommended that I connect with other women in the area. One name that I kept hearing was Shehzin’s. After being introduced via email, we decided to meet for appetizers. As soon as we embraced and sat down, our friendship blossomed. We bonded over shared experiences of being women, mothers, and living in Atlanta.

Although we didn’t discuss breast cancer extensively, we knew it was a common thread that connected us. We also discovered that we knew many of the same amazing women in the breast cancer community. Shehzin impressed me with her kind spirit, intelligence, and sense of humor. Her calming strength and positive energy made an impact on me. Today, she is not just a friend, but also a colleague at Living Beyond Breast Cancer (LBBC) whom I get to see regularly.

One day, as we caught up after work, I shared news of a new series I was creating with For The Breast Of Us (FTBOU). The idea was to interview remarkable women in the breast cancer community, engage in intentional conversations, and share their unique stories. As women of color, it was important to me to showcase the many facets of our lives beyond just our diagnosis. I believed she had a beautiful story to share, so I asked her if she would be open to an interview. Thankfully, she agreed.

As I mentally prepared for our conversation, I realized how little I knew about the experiences of my Asian sisters with breast cancer. Unlike other women of color, I was not familiar with statistics related to this population. I went online to learn more, and I found articles that highlighted the lack of studies tracking the impact of breast cancer specifically for Southeast Asian women. One issue that kept coming up was the cultural stigma and myths surrounding breast cancer in this community.

Like other women of color, many Asian women may not be aware of their family’s history of breast cancer, and cultural stigmas can play a powerful role in keeping diseases hidden. These stigmas can have multilayered psychological impacts, causing individuals to keep their illness a secret, delay seeking care, and avoid discussions about breast health. Unfortunately, the medical care system often lacks culturally relevant resources and materials, exacerbating these issues.

Shehzin’s breast cancer journey began when she discovered a marble-like lump in her breast while on vacation with her then-boyfriend (now husband) at the age of 27. As soon as possible, she made an appointment with her OB/GYN, an African American woman whom she felt fortunate to have as her doctor because she really listened to her concerns. Shehzin shared that she knew she had an Aunt on her mother’s side who had breast cancer but was unaware of the specifics. Her OB/GYN was familiar with the tendency of people of color to avoid discussing familial history and suggested that she get a biopsy.

Shehzin underwent a guided ultrasound and biopsy, which were completed in the same appointment on a Thursday. By the following Monday, she received the news that she had breast cancer and would need to follow up at Emory. During her visit, she met with both a surgeon and an oncologist, and together they decided to conduct genetic, genomic, and eventually Oncotype testing. Genetics refers to a person’s genetic makeup, while genomics refers to a tumor’s molecular composition. The results showed that the BRCA genes were present but not valid markers in the United States. She was diagnosed in July 2015 with Stage 1 ER/PR+ (hormone receptor) breast cancer.

Shehzin believes that her healthcare team paid close attention to her because of her young age. Her lumpectomy revealed no lymph node involvement. Emory had just begun Oncotype testing at their center so her team ordered the test. The Oncotype test predicts the likelihood of breast cancer spreading to other parts of the body within 10 years of diagnosis. Shehzin’s results fell in the middle range, and her team decided on a less aggressive treatment plan, considering her desire to have children in the future. They informed her that if she chose to skip chemotherapy, it would be in her best interest to have a double mastectomy or lumpectomy with radiation. In November, Shehzin underwent a double mastectomy with immediate reconstruction using implants and nipple-sparing, which seemed like the easiest route for her.

Throughout our conversation, Shehzin acknowledged that her experience is not the norm for most people of color. This realization has fueled her personal mission to bring awareness and be a voice of change for the community.

In the fourth installment of our amazing series, Baddie x 2: Growth Through Conversations, I was able to catch up with awesome baddie, Shehzin Tietjen.

Q & A Shehzin Tietjen

Hey Sis! Thank you for your time and willingness to share your experience.

How did you hear about For The Breast Of Us (FTBOU)?

Tiah Tomlin-Harris, a Young Advocate with LBBC and Co-founder of My Style Matters, told me about FTBOU when I attended an advocacy event.

What is your favorite part about being an FTBOU baddie?

How has FTBOU supported you?

FTBOU has supported me in so many ways. Although I haven’t been very involved, I benefit from the community and its content. Now that my daughter is two years old, I want to get more involved. The Naked Truth (TNT) campaign was amazing content! I can confidently say that what I see on the FTBOU feed and the programming that is being done, I didn’t see on other platforms. Especially back when I was diagnosed, this kind of support just wasn’t there, but thankfully there are organizations that are trying to provide it now.

FTBOU was a place where I could go to find other women with similar stories. The TNT campaign was incredibly empowering. I thought, “Look at how brave and amazing these women are!” Proudly showing their bodies and smiling with their tribe of women, knowing the impact that it will have on all who will see them.

What is your current treatment plan?

10 years of Tamoxifen

What does it mean to be a survivor/thriver to you?

I feel fortunate to be where I am in my breast cancer journey, and I want to live every part of my life with purpose. I am deeply involved in advocacy and feel strongly about the need to continue innovating and treating metastatic breast cancer (MBC) through research dollars and other resources. I am passionate about raising awareness and attention to MBC.

Due to my cultural background, I was discouraged from sharing my story about being diagnosed with breast cancer. Initially, I gravitated toward research and public policy, and since then have started to become more open about Oncofertility and the sexual components of survivorship to encourage others to talk about these topics with their partners and healthcare team members.

Since becoming a mom, the side effects of Tamoxifen have been really challenging for me. I experience fatigue, brain fog, insomnia, and vaginal atrophy, which have been a daily struggle since my daughter’s birth. I find myself to be very restless and my shirt drenched in sweat. As a 35-year-old, Tamoxifen is the only treatment I have for defense and protection against breast cancer recurrence.

We as WOC have had to survive/thrive on many different levels, sometimes to the point where we can’t slip up. How tired are you from just thriving?

I have mixed feelings about this. On one hand, I am tired of having to constantly advocate for myself and fight for the things that aren’t given, offered, or taken from us. However, over the past seven years, I have learned from other advocates how to be a strong advocate for myself, and I feel energized by people like Marissa, you, and all of the Baddies who use their voices to bring awareness and share their experiences.

On the other hand, I am not tired of thriving because breast cancer still has no cure. I recognize that some people do not get to move on or will always be on treatment, which is why I am a passionate advocate for MBC awareness and research.

I also recognize the privilege that I have living in Atlanta, having a decent job, and having access to a major cancer center that provided me the opportunity to be proactive with fertility and have open conversations about my treatment. It’s not fair that everyone can’t have access to that same standard of care.

What was the impact of having a woman of color on your healthcare team (overall healthcare, breast cancer, fertility, etc.)?

Having people of color on my care team has been life-changing for me.

It all started with my OB/GYN, (who is African-American), asking all the right questions when I felt a lump in my breast and sent me for additional screenings at the young age of 27. She was with me from the beginning of my breast cancer diagnosis, and seven years later, she delivered my baby, Lyla. I am grateful to have received treatment at a large cancer center with a diverse care team. While it’s not perfect, I have often felt represented and heard as a patient.

Can you share some of the concerns that thrivers/survivors of breast cancer may encounter should they decide to have children?

I struggled for a long time after Lyla’s birth because I couldn’t provide breastmilk for her. However, I have since realized that bringing life into the world and becoming a mother is a huge accomplishment and blessing, regardless of how you feed your child. Parenting is already challenging, and doing it after cancer with additional challenges like long-term treatment side effects, fertility issues, fear of recurrence, and financial burdens is a lot to handle and can be an emotional minefield.

What do you do that you feel assists you physically overall?

While I do experience fatigue and tiredness at times from the side effects of Tamoxifen, I feel emotionally and mentally in a good place overall. Becoming a mom has been a life-changing experience, and I am grateful that I had the opportunity to do so. It wasn’t until that option was almost taken away from me that I realized just how important it was to me.

Mentally, what do you do on those hard days to push through?

I have learned to step back when I need to, especially on days when I feel emotional and anything can start the tears. In those moments, I prioritize snuggling with my baby, getting a hug from my mom, and spending time with my husband.

I have stopped worrying about crossing things off my to-do list and instead focus on taking care of myself and those I love.

What complementary therapies have you tried?

I have found that practicing breathing meditation has been helpful in discarding both positive and negative thoughts that can clutter my mind. I did this consistently for a year. I also prioritize exercising regularly and eating well.

To minimize my anxiety, I limit my interactions with people or situations that create tension or stress. I have also learned to cut ties with things or people when necessary and to have measured and controlled interactions in general.

Have you made any other lifestyle changes that seem to work for you?

I mostly follow a plant-based diet, but I still consume meat, dairy, cheese, ice cream, and other foods in moderation. I also drink alcohol socially, but I prioritize trying to maintain a healthy lifestyle. While I cannot always make it to the gym, I make sure to get some form of exercise, even if it’s just a walk outside to keep my body moving.

Tell me about your support system.

My mother played a significant role in my support system during my active treatment. I have a fond memory of her washing my hair in a bowl. She continues to remind me to eat healthily.

At the time of my diagnosis, my husband, mother, and a group of friends who were going through a season of change provided me with tremendous support. One of my friends came over to give me shots for IVF, and my best friend, who is a lawyer, attended my very first appointment with me and took notes. She asked questions and recorded everything.

Though I have always been independent and somewhat introverted, my diagnosis led me to open up and ask for help from anyone who was there for me. I also let go of some relationships that did not serve me during my journey.

I consider myself extremely fortunate to have had such a supportive network.

What effect did BC have on your marriage?

Carsten and I were in a long-distance relationship when I found a lump and was diagnosed. When the doctor called with the news, I dialed Carsten in for all of the details. After the call, I basically told him that there is a lot that comes with this, and he doesn’t have to stay with me as we were dating and not engaged. He let me know that the diagnosis didn’t matter and that he was committed to being with me through it all. I believe that breast cancer tested our relationship very early on.

Despite our different cultures and backgrounds, Carsten has been a loving and supportive partner who has respected my wishes about how to live my life. He’s a good egg. I just knew from the start that he was a keeper!

How has your diagnosis affected your family?

The diagnosis freaked out a lot of people, so we didn’t share it with many family members. Some family members found out through others. My parents didn’t speak about it much; they saw it as something bad that happened to their daughter and just asked others to pray for me. It’s challenging to navigate these situations across different cultures and generations.

What parts of old YOU are still a part of YOU today?

I’ve always been interested in social justice issues and involved in political activism, particularly issues affecting women. After my breast cancer diagnosis, it made sense to me to channel my activism toward breast cancer advocacy.

What are your favorite parts about NEW you that OLD didn’t have?

The new Shehzin is better about standing up for herself though I know I can still improve. In the past, the old Shehzin was sometimes seen as a pushover by the people closest to her. I used to let others convince me to follow their path instead of trusting my own journey. Now, I stand up for myself in all aspects of my life.

How do you advocate?

When I was diagnosed with breast cancer, my first thought was to reach out to others at work and in my community who had gone through it. I surrounded myself with supporters and loved ones who helped me learn how to advocate for myself. For my first appointment with my oncologist and surgeon, a dear friend went with me to help me stay on track and ensure that all my questions were answered, particularly those related to my concerns about fertility.

Another colleague connected me with his wife, who was diagnosed with a different subtype of breast cancer in her 30s. Our conversations helped me understand the complexity of the disease and the need for reliable, evidence-based information to aid me in making decisions about my care. She also directed me to a local support group for young women, which led me to discover several great online resources about my subtype, quality of life concerns, and most importantly, all the different ways I needed to advocate for myself.

For example, in my case, I paused my hormonal treatment to have a baby, a decision I reached after reviewing ongoing clinical trials evaluating the safety of pausing hormone treatment for pregnancy. Advocating for myself in this way required staying informed and bringing research findings to my doctor’s attention.

Now, in my seventh year of “survivorship,” I continue to stay informed about the latest tools and advancements for monitoring and surveillance, always asking my oncologist about new developments and emerging treatments that might benefit me.

What concerns/worries about your breast cancer?

For early-stage breast cancer patients, there are several challenges that we face. One of the most concerning issues is the lack of effective surveillance and monitoring, which can leave us feeling fearful about the possibility of recurrence. And, despite the significant amount of money invested in cancer research, a cure for breast cancer remains elusive.

Also, while patient advocates are making progress, the system is often stacked against us.

The healthcare system can be complicated to navigate, and many patients face financial toxicity due to the high cost of treatment.

These challenges require continued attention and advocacy to ensure that breast cancer patients receive the care and support they need.

What are three things that you would tell someone who was just told that they have BC?

Understand your breast cancer subtype and stage

• Breast cancer subtypes can vary in aggressiveness. Knowing your subtype and understanding it can help you prepare for what lies ahead. Also, connecting with others who have the same subtype and stage can provide valuable insights and support as you navigate your journey. If you are diagnosed with stage IV, joining peer support groups through advocacy organizations can be particularly helpful. You can find others similarly diagnosed and learn about clinical trials and precision oncology treatments for your type of cancer.

• Don’t be afraid to lean on your support system and those who want to be helpful. Push away those who do not have your best interests in mind. Hold onto hope, and have faith in whatever higher power you believe in. It may not be easy, but the universe has a plan.

Find a tribe and breast cancer support community

• If you feel comfortable doing so, speaking openly about your experience in your community can help build supportive resources for women of color, especially African American women. They face a significantly higher mortality rate than white women (41% higher).

You are not alone!

• Cancer support and treatments have come so far! There are many resources, financial assistance grants, and amazing programs to help patients at every stage of their cancer journey.

What is a typical day like for you now?

My typical day starts with waking up, feeding my baby, and getting us both ready for the day. I work from home as the Associate Director of Corporate Relations for Living Beyond Breast Cancer, so I get ready for work after taking care of my daughter. In the evenings, I try to make time for exercise and get outside with Lyla.

Why do you feel it is important for us to reach out to the culture?

Breast cancer affects all women, not just white women. However, representation and support services need to reach other cultures to ensure that everyone has access to care. As a child of Southeast Asian immigrants from Bangladesh, I know that we don’t always talk about gynecological and sexual health in my culture. This can lead to barriers to care for people of color. African American women and other women of color have a higher mortality rate compared to their white counterparts, highlighting the need for greater awareness and advocacy.

How can our listeners connect with you?

IG & Twitter: @shehzint

I am thankful that Shehzin trusted me to share her story. Although she may have been hesitant, she recognized the potential impact it could have on other women of color newly diagnosed, in the middle of their own journey, or in survivorship. In every interaction, I see a new version of Shehzin – one who is confident, strong, and determined to use her voice to advocate for others. She is humble and appreciative of the blessings in her life, including her daughter Lyla, her husband Carsten, a supportive family, and great friends. Shehzin, keep spreading your wings and using your voice to represent the real you to the world. I see you Sheh!