My guest on this episode is Tara Cohen, the Director of Marketing at Lauren’s Hope. She was diagnosed with a BRCA2 mutation through 23 and Me. After repeated diagnostic testing that left her in a constant state of fear and anxiety, she opted for a prophylactic bilateral mastectomy that resulted in complications. Tara also talked about the importance of medical ID bracelets specifically for those with breast cancer who have or may be at risk for developing lymphedema.
Show Notes:
In 2018, Tara purchased a 23 and Me kit on Black Friday, thinking that it would be a fun thing to do. While waiting for her results, Tart found a lump in her left breast through a self-exam. Due to a history of cancer in her family, she was concerned that it could be breast cancer. Tara went through all of the diagnostic testing, which showed that the lump was benign. However, it was recommended that she see a breast surgeon to determine if the lump needed to be excised.
After going through the initial round of diagnostic testing, which took approximately 2-3 weeks, Tara decided to give herself a week to decompress from the process. She had gotten a referral for a breast surgeon from her boss at Lauren’s Hope, who is a breast cancer survivor. Prior to making her appointment, she received the results from her 23 and Me testing.
Tara recalls reading through the ancestry information and was not surprised by any of the information. Before she could read her health information, she read through a lengthy disclaimer that 23andMe provides. The results revealed that Tara tested positive for a BRCA2 mutation. She was terrified, alone, and overwhelmed. She was only a week out from finding out that she did not have breast cancer but was now being informed that it was a possibility.
Tara was the first in her family to be tested for a genetic mutation. Her grandmother, who is in her 90s, had been diagnosed with colon cancer in 2019 and was recommended for genetic testing. Her grandmother had also had breast cancer many years ago. For Tara’s family, the individuals with cancer were in the older generation or had passed away. It was also a challenge to think about having to tell her entire family that she tested positive for a genetic mutation because there are possible implications for parents, siblings, and her own children.
After getting her 23 and Me results, Tara immediately made the appointment with the breast surgeon. The benign lump did not have to be excised. During that appointment, Tara shared that she had been identified as having a genetic mutation through 23andMe. Her doctor indicated that he did not know the accuracy of the test but sent her to genetics for follow up. In addition, she was to be seen in 6 months for additional diagnostic testing as a result of the lump.
Approximately 2-3 weeks later, Tara met with the geneticist. It was indicated that the same kind of testing was done as 23andMe but more extensively and if a BRCA2 mutation existed, it would be confirmed. The geneticist also explained what having a BRCA2 meant in language that made sense to Tara. The results indicated that she did in fact have the BRCA 2 mutation.
The following months were full of appointments for Tara. It seemed that every time she went in for a follow-up scan, something suspicious was found and additional testing had to be completed. She had to undergo additional MRIs, ultrasounds, and biopsies. She was living in a constant state of feeling that she did and then did not have breast cancer. It created deep anxiety for her that today she was clear but that could change tomorrow and 6 months later could be a different story. The anxiety was paralyzing to her personal and professional life.
It was recommended that Tara consider a prophylactic mastectomy, as well as a full hysterectomy and oophorectomy by the time that she turned 45 years old. She had just turned 44 and felt like she was up against a wall. In addition, she had undergone too many scans and had too many scares. She no longer wanted to live in that space of constant fear. Having knowledge about a genetic mutation is helpful and powerful information. It is a great resource for being proactive in one’s health; however, the information can also take a real toll on one’s mental health.
Tara opted to undergo a prophylactic bilateral mastectomy. Approximately 4 weeks following her surgery, she had necrotizing tissue and she had to have a wound revision completed in the office that day. When she returned for another follow-up appointment, she was informed that she needed to undergo an immediate explant of the expander because she had an infection. She was given a number of different options and had to make that decision within an hour. Tara put her trust in her doctor to make the right decision for her health. She has recovered well from the surgery and underwent reconstruction. She is allowing herself some time to decide on any revisions and tattooing.
During the pre-op for the surgery, the nurse asked Tara if she had any lymph nodes removed. Since she had one removed during the mastectomy, a temporary tattoo was put on her arm so that the medical professionals knew that she should not have any blood pressure, IVs, or needles on her left arm due to the potential risk of lymphedema. With her experience working in medical ID jewelry for 7 years, Tara knows that lymphedema is a very serious issue whether it is primary or secondary, and that removal of lymph nodes, as well as radiation, can result in secondary lymphedema immediately or years later.
For Tara, it underlined the importance of wearing a medical ID bracelet, particularly if someone cannot participate in their own medical care. While the goal during a medical emergency is to save the person’s life, having a medical ID bracelet may be helpful to identify any issues that may need to be considered in the treatment when someone cannot participate in their own care. She always wears her medical ID bracelet on her left arm that serves as a reminder for her and medical professionals to not use that arm.
During her mastectomy prep process, she waited to see if anyone would bring up anything related to lymphedema. Though she was already aware of the risk, she was curious when it came up in conversation. However, it didn’t come up in conversation until she brought it up. The conversation appears to be more of an aftercare issue. Many breast cancer survivors and previvors order medical ID bracelets years later after a healthcare professional asks why they are not wearing a lymphedema alert. They did not know there was a need for one. There are risks for developing lymphedema and a medical ID bracelet is a way to mitigate some of the risks.
