In March 2019, Emily Rich was diagnosed with a rare form of breast cancer- encapsulated papillary carcinoma. She was 32 years old. Emily and her fiancé had just moved cross country from California. Approximately 4-5 weeks later, she was laying in bed and felt a lump in her breast. She began searching for information related to possible breast cancer.

Emily had not yet found a doctor in her new town but scheduled an appointment and had a breast exam followed by a mammogram, ultrasound, and then biopsy. Within a week, she received the phone call from the radiologist that yes, it was cancer. Emily did not hear much beyond that. She called her fiancé to tell him that it was cancer and that he needed to come home.

Her fiancé called the surgeon who was recommended and Emily was able to be seen that day. She recalls teetering between tears and terror. The surgeon explained exactly what type of breast cancer she had. Given that a paternal aunt had the same cancer that was the same size in the same breast, Emily had genetic testing completed. While she was certain that she would test positive for a BRCA gene mutation, she did not. She continued to have genetic testing completed every few years as new mutations are discovered.

Emily was given the option of a lumpectomy or mastectomy. She opted for a lumpectomy followed by radiation and then Tamoxifen. She did not have to undergo chemotherapy. Just before beginning radiation, Emily found out that a secondary cancer was discovered inside of the encapsulated papillary carcinoma. This did not change her course of treatment since the lump was removed but it added another layer to the rarity of the disease.

When Emily initially met with the breast surgeon, she was given all of her options for treatment and was told to meet with the plastic surgeon, medical oncology, and fertility oncologist. She was hesitant at first about meeting with a fertility oncologist but was strongly encouraged to at least have a consultation and get the information to make an informed decision.

Emily and her fiancé had talked before cancer about their desire to have children and were planning to begin the process at the end of 2019 but with cancer now in the picture, that would have to be delayed. Emily and her fiancé made the decision together to preserve her eggs. In addition to her own cancer diagnosis, her soon to be husband was also a testicular cancer survivor so the future was uncertain for both of them. Together, they felt like it would be good for them in the long run.

Emily’s initial hesitation with fertility preservation was the fact that her cancer was hormone positive so it seemed counterintuitive to pump the body full of hormones in order to preserve her eggs. However, extra precautions are put in place for cancer patients going through IVF. Emily was monitored every other day for bloodwork and ultrasounds until she was ready for egg extraction. Those going through cancer treatments are given different dosages.

As part of the IVF, Emily had to self-inject using 3 needles. Her mother and father had flown in from CA and her mother, a retired RN, was going to administer the IVF medications. After her mom did the first injection, Emily felt like she had popped some kind of emotional balloon with the first needle. All of the emotions she had been holding onto about her cancer journey had risen to the surface. Emily decided that she had to do the injections on her own as a way to take back some control. She felt very empowered from learning to do self-injections.

Emily indicated that the IVF process was exhausting from start to finish. The preparation was intense. There were medications to be mixed, the medications had to be kept at a certain temperature, she had to make sure she did not stick herself, and she had to have sufficient alcohol wipes. She was emotionally exhausted as well. She was seen every other day for tests and an ultrasound. The process was approximately 2 weeks from start to finish. Emily feels lucky that she had a successful experience after the first round but many women have to go through three or four rounds of IVF before it is successful.

Through her experience, Emily realized that fertility preservation is a privilege and not a right. She did not see much diversity in the women who were sitting in the waiting room. Many states do not have financial protections in place for women who want to preserve their eggs and many do not have access to that type of healthcare. In addition, insurance companies have the ability to delay the decision on fertility preservation but cancer patients are not typically in the position of waiting for an extended time.

Emily feels strongly that the decision regarding fertility preservation is a very important and personal decision but the conversations need to take place. Women have to agree to fight a whole other battle on top of the battle they are already fighting.

Emily’s advice for anyone who is newly diagnosed with breast cancer is to listen to the advice of the doctor, take in all of the information, sit with it, and take a moment for yourself to really consider what you want in the situation. It is okay to take a minute to breathe. She also recommends being patient with yourself and make the decision that is right for you. Whatever decision you make, know that it is the right one.