Coping With a Breast Cancer Diagnosis & Advocating For Yourself
- Kristen Berset, a two-time breast cancer survivor and former Miss Florida USA, discovered her first tumor in her 20s after a doctor misdiagnosed it twice—her persistence led to a stage 1 diagnosis.
- Despite no family history or BRCA mutation, Berset chose a prophylactic double mastectomy to reduce her risk—yet seven years later, she detected another lump and underwent lumpectomy and proton radiation. She’s now cancer-free.
- Genetic testing – which may involve a simple blood test, saliva sample, or tissue collected through a biopsy – can help determine if you have a specific mutation that puts you at higher risk for cancer. The results help doctors tailor treatment and are helpful for breast cancer patients.
- A double mastectomy is a procedure that removes both breasts. Some women choose this procedure to reduce their risk of cancer, especially if they have a family history of cancer or possess the BRCA1 and BRCA2 gene mutation, which also increases their risk.
- The U.S. Preventive Services Task Force recommends women begin screening for breast cancer at age 40. Women should talk with their doctor to learn about their cancer risk and assess when it is a good time to start annual mammograms.
Diagnosed twice before the age of 35, Berset has become a fierce advocate for early detection and self-advocacy, urging women to trust their instincts and speak up when something feels off.
The First Lump—and a Dismissed Warning
Read MoreWATCH: Cancer Research Legend Urges Patients to Get Multiple Opinions
For early-stage breast cancer, studies have shown that lumpectomy plus radiation is as effective a treatment in preventing a recurrence of breast cancer as mastectomy.
“As the breast surgeon, I then make a cut in the breast and remove the cancer, and then I will do certain plastic surgery techniques to rearrange the tissue just in that area to make it look nice,” Dr. Sarah Cate, Chief of Breast Surgery, Stamford Hospital, explained.
“A lot of the time, the stitches are underneath the skin, and I use a skin glue. And that’s also taken from plastic surgery techniques for the best possible appearance of the scar. I also place the scars, most of the time, by the areola, or maybe at the bottom of the breast, so that patients can wear V-necks or bathing suits, and they really cannot see the scar after some time,” Dr. Cate continued.
The diagnosis came as a shock. “I have no family history. The doctors actually said to me, ‘We don’t know why you got breast cancer,’” she explained. Genetic testing revealed she didn’t carry the BRCA mutation either.
WATCH: Should I Get Genetic Testing to Assess My Risk for Breast Cancer?
“Doctors had no idea why,” Berset said.
Determined to reduce her risk of recurrence, she chose a prophylactic bilateral mastectomy—a decision often made by women with high genetic risk or strong family history. According to the National Cancer Institute, this surgery can reduce breast cancer risk by up to 95% in BRCA-positive women and 90% in those with familial risk. But it’s not foolproof.
“Mastectomy is not 100% effective,” the NCI notes, “because it’s impossible to remove all breast tissue that may be at risk.”
Berset learned this firsthand.
Seven years after her mastectomy, she felt another lump.
“As soon as I felt it, I knew. I knew right away what it was,” she said.
She underwent a lumpectomy followed by multiple rounds of proton radiation therapy—a targeted treatment that minimizes damage to surrounding tissue.
WATCH: Should I Have a Lumpectomy or Mastectomy?
Lumpectomy patients are usually at the outpatient surgery center for about four hours. If patients aren’t feeling well or experiencing additional pain or discomfort, they might stay longer.
Survivor, Advocate, Educator
Today, Berset channels her experience into advocacy, encouraging women to perform regular self-exams, pursue genetic testing, and push for answers when something doesn’t feel right.
Her story is a powerful reminder: breast cancer doesn’t always follow a predictable path, and listening to your body can be lifesaving.
Helping Patients Cope with a Breast Cancer Diagnosis
- Mammograms Are Still the Best Tool for Detecting Breast Cancer — A Warning About Thermography
- The Mammogram Debate: Should Women Start Breast Cancer Screening at 30?
- Introduction to Early-Stage Breast Cancer
- Hope For Some Early-Stage Breast Cancer Patients: Verzenio
- For Breast Reconstruction After Mastectomy, Women May Choose ‘Now,’ ‘Later,’ or ‘Never’
- Should I Have a Lumpectomy or Mastectomy?
Understanding Genetic Testing
Genetic testing for cancer is typically conducted in a medical setting, such as a primary care office or an OB-GYN clinic. However, some tests are now available for direct purchase, allowing individuals to explore their genetic risk independently.
Initially, genetic testing was recommended for a limited group of individuals based on specific risk factors, including a strong family history of breast cancer, personal cancer history, or certain ethnic backgrounds.
WATCH: Helping you understand genetic testing.
“It started out with a very narrow field of women and men who were recommended to have it based on certain risk factors, family history of breast cancer, or other cancers, and also ethnic backgrounds,” explains Dr. Elisa Port, a surgical oncologist at Mount Sinai, in an interview with SurvivorNet.
Guidelines from the National Comprehensive Cancer Network (NCCN) suggest that genetic testing should be prioritized for patients at higher risk for hereditary breast cancer. This includes individuals diagnosed with breast cancer before the age of 45, those with a strong familial history of the disease, and individuals of Ashkenazi Jewish descent.
Meanwhile, the American Society of Breast Surgeons (ASBrS) takes a broader approach, recommending genetic testing for all patients diagnosed with breast cancer.
These evolving recommendations reflect a growing emphasis on personalized medicine, ensuring that individuals at risk receive appropriate screening and guidance to manage their health proactively.
What If You Have the BRCA Gene Mutation?
Discovering a genetic mutation can be unsettling, but there are several options available to manage cancer risk effectively. These include enhanced screenings for early detection, prophylactic (risk-reducing) surgery to remove high-risk tissue, and chemoprevention—the use of medications designed to lower the chances of developing cancer.
Interestingly, for individuals diagnosed with ovarian cancer, carrying a BRCA mutation may provide a treatment advantage when paired with a class of drugs known as PARP inhibitors. Approved by the FDA starting in 2014, these targeted therapies have transformed the landscape of ovarian cancer treatment.
WATCH: Understanding the BRCA Gene Mutation
PARP inhibitors function by blocking the protein PARP, which normally repairs damaged DNA. By preventing this repair process, the inhibitors selectively destroy cancerous cells while sparing healthy ones, making them a powerful treatment tool.
“The PARP inhibitor prevents the repair of the [damaged] single-strand DNA break, and your BRCA mutation prevents the repair of the double-strand DNA break,” explains Dr. Rebecca Arend, Associate Scientist at the University of Alabama, Birmingham, in an interview with SurvivorNet.
This combination of genetic insight and advanced medical therapies highlights how precision medicine continues to evolve, offering more effective, tailored approaches to cancer prevention and treatment.
What to Consider When Weighing Preventive Mastectomy?
A prophylactic, or preventative, mastectomy is an operation where the breast tissue is removed to prevent cancer from developing in the future.
“Risk-reducing mastectomies are an operation where we take women at, usually, very high-risk for getting breast cancer, for genetic mutation carriers, who are the ones at the highest risk; there’s unfortunately only one way to actually prevent breast cancer,” Dr. Elisa Port, Chief of Breast Surgery at Mount Sinai Health System, tells SurvivorNet.
WATCH: What to Consider When Thinking About a Mastectomy
“Women who are found to test positive for a genetic mutation really have two options,” Dr. Port explains. “One is what’s called high-risk surveillance, which means we check them every six months or so mammograms, MRIs with the hope that if God forbid, they develop breast cancer, we pick it up early. But that’s not prevention; it’s early detection.
“Early detection is a goal; it’s not a guarantee. For the woman who wants to be more proactive about actually preventing breast cancer, or as we say reducing her risk, unfortunately, the only way to do that is to remove the actual tissue at risk, and that is the breast tissue,” she adds.
Some women decide to have their breasts reconstructed and have implants put in right after the mastectomy, while others don’t have reconstruction at all.
The benefits of a prophylactic or preventative surgery are:
- Significant reduction in cancer risk (from 80-90% to 1-2%)
- Nipples can often be spared
- Women can get reconstruction at the same time
Considering a Self-Breast Exam? Here Are the Steps.
If you choose to incorporate self-exams into your routine, here’s a step-by-step guide to help you get started:
- Visual Check in the Mirror
- Stand straight with your hands on your hips and observe your breasts for any visible changes—swelling, bulging, asymmetry, redness, rashes, or fluid discharge. Repeat this check with your arms raised overhead to spot subtle shifts in shape or contour.
- Physical Exam While Lying Down
- Lie flat and use your right hand to examine your left breast, then switch sides. Use the pads of your first three fingers to apply varying pressure—light for surface tissue, medium for mid-depth, and firm for deeper areas. Cover the entire breast zone: from collarbone to ribcage, and armpit to cleavage.
- Repeat While Standing or Sitting
- Some women find it helpful to repeat the exam in the shower, where fingers glide more easily over wet skin. Consistency is key—monthly checks can help you recognize what’s normal and flag anything unusual.
Help Coping With a Breast Cancer Diagnosis
If you are facing a breast cancer diagnosis, your emotions are likely to run high, which is completely normal. Psychiatrist Dr. Lori Plutchik says emotions are often fluid when coping with a diagnosis.
“The patient or person going through the stressful event should accept that emotions will be fluid. You may feel fine one day and then feel a massive wave of stress the next. It’s also important for those you look to for support, whether that’s a therapist, friends, and family, or both, to understand the fluidity of stress-related emotions,” Dr. Plutchik said.
WATCH: How to cope with complex and changing emotions.
If a stressful event affects how you think and feel, it may be time to seek mental health treatment. This could mean traditional talk therapy, medication, changing lifestyle habits (like exercise and diet), seeking a support group, or many other approaches.
SurvivorNet experts suggest that women who need a little extra help coping with a breast cancer diagnosis.
- Let your family and close friends know, and let them help. So many cancer survivors tell us they want and need support, but are often too preoccupied to make specific requests. Urge those close to you to jump in with whatever practical help they can offer.
- Keep a journal. It can be extremely cathartic to let those feelings loose on paper. Grab a pen and a nice journal and chronicle your thoughts throughout the day.
- Join a cancer support group. Groups in nearly every community offer opportunities to connect with others going through a similar journey. You’ll learn constructive insight from others who can tell you what to expect and how to stay strong on tough days.
- Consider seeing a therapist. Ask your doctor to refer you to a therapist so you can discuss your fears and concerns in a safe space. Often, vocalizing your thoughts and feelings rather than internalizing them can provide relief.
Recognizing Breast Cancer Symptoms
Women are encouraged to do regular self-exams to become familiar with how their breasts feel normally, so when something unusual, like a lump, does form, it can be easily detected. A self-exam includes pressing your fingertips along your breast in a circular motion.
For some women, that means going to their doctor and walking through what a self-breast exam looks like, so they know what normal breast tissue feels like, so if they do feel something abnormal, whether it’s a lump or discharge from the nipple, they know what to ask and what to look for.
Below are common symptoms to look out for:
- New lump in the breast or underarm (armpit)
- Any change in the size or shape of the breast
- Swelling of all or part of the breast
- Skin dimpling or peeling
- Breast or nipple pain
- Nipple turning inward
- Redness or scaliness of the breast or nipple skin
- Nipple discharge (not associated with breastfeeding)
Questions to Ask Your Doctor
If you’re facing the option of having a mastectomy, here are some questions to consider asking your doctor:
- What can I do to prepare for a double mastectomy?
- What happens before and after the procedure?
- For reconstruction, what are the benefits of using implants over my own tissue and vice versa?
- What should I know about implants? Should I opt for preventative surgery?
- What will recovery look like after the procedure?
- What are the benefits of a watch & wait approach vs. preventative surgery?
- What kind of surveillance is required after the surgery?
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