My name is Josilyn and I am 35 years old. I am a mom. I am a wife. I am a daughter. I am an aunt. I am a friend. And I found out 8 days ago that I have breast cancer.
Typing the words, “I have breast cancer” in black and white on a computer screen is surreal. It is unbelievable. It is shocking. It is chilling.
As far as I know, I am not someone who is at high risk for breast cancer, and besides keeping up with my annual exams and doing occasional self-exams, breast cancer has never been on my radar. At 35, I am a lot younger than most women are when they receive a breast cancer diagnosis, my only known family history of breast or ovarian cancer is from my paternal grandmother, my first period was after the age of 12, I had my first child at 29, and I breastfed each of my children for 2-2.5 years. However, I am female, I used different types of birth control for a large percentage of my life, and I do drink alcohol.
One night at the end of August, I felt a sizeable bump in my right breast. I was not completely freaked out because after breastfeeding for a total of 4-5 years, and being aware of regular changes in my hormones each month, feeling lumps and bumps in my breasts is not uncommon, and they normally go away. This bump, however, seemed different, and I asked my husband what he thought. He agreed it was abnormal and we planned for me to call my gynecologist.
I was due for my annual gynecological exam in the summer, but with COVID in full swing, going into a doctor’s office for something routine that seemed like it could wait seemed silly so I never made an appointment. When I finally called my gynecologist’s office to schedule the appointment, the earliest date they could see me was November 11, 2020. In hindsight, I should have mentioned the lump then, but I did not.
A week later, the bump seemed to shrink with my menstrual cycle and that was enough for me to believe that it was really nothing. I pushed it out of my mind until my appointment in November.
During my exam in November, my gynecologist felt the bump. She wanted to refer me to a breast doctor to get an ultrasound. This was complicated because our local hospital, UVM Medical Center, had been cyber-attacked and nothing was operating as normal. Luckily, my doctor made a referral to a breast doctor who uses a different medical records system. She told me she did not want me leaving our appointment believing she thought I had cancer. She told me that the lump was probably one of three things, two of which were not cancer.
I left with my head feeling like it was in a fog, not being able to put thoughts together, but quickly began to believe this was just a bump (unintended pun) in the road and it would all be okay. I would be okay.
On November 19th I met with my breast doctor. During the ultrasound, it became clear that she had concerns. She said that while she could be seeing normal, healthy breast tissue, those types of spots in breasts are normally found higher in the breast, and mine is underneath the breast. She asked to do a biopsy right then. A comment she made that stuck with me was, “It’s not small.” She told me she was going to refer me for a mammogram but would have to send me 40 minutes north to a different hospital because it is 2020 and hospitals being hacked during a global pandemic is normal. She told me that biopsy results could take 1-3 weeks.
I left that appointment in shock. I wanted to believe none of this was real and that the entire experience would be another cruel joke of 2020: make me get a biopsy and worry about breast cancer but in the end, I would find out that everything was okay.
6 days later, the day before Thanksgiving, my husband and I were getting the kids situated with lunch and I was preparing to leave for my mammogram when my breast doctor called. I perked up, excited because I *knew* the results from the biopsy would be negative.
I do not recall her exact words, but she said something like, “Unfortunately the biopsy does show cancer, I’m so sorry.” She started telling me the type of cancer I have, and my brain could not hold onto the words. I grabbed a piece of paper and a pen and tried to write. She repeated the name several times but all I could hold onto was “stage zero.” She talked about the need for a mammogram, and I told her I had one scheduled that day. She said, “We need to make sure there are no other spots.”
I asked her again to repeat the name of the cancer: Ductal Carcinoma In Situ (DCIS). I asked her what treatment would look like and she said it all depended on if there were other spots. She told me she was sorry.
My husband was next to me reading my pen scratches on the paper and I autopilot Googled “Ductal Carcinoma In Situ (DCIS).” One of the first things I read on whatever link I clicked was “mastectomy” and I fell apart. I could not breathe. I cried. After a few minutes, I excused myself, telling my husband I wanted to be alone and needed to clean myself up to get in the car and go to my mammogram.
I proceeded to go into our bathroom and sobbed on the floor.
A side note, in the middle of what is probably the most devastating news I have ever been told about my own body, I almost wanted to laugh, because normally our master bathroom is very messy and at times gross because it is the last thing to be cleaned in the hierarchy of life, but I had cleaned our bathroom that morning. I remember being grateful that the bathroom floor was sparkling. Receiving a life-changing diagnosis made me feel like certain parts of my life were going in and out of focus senselessly.
My husband kneeled with me on the floor and I cleaned myself up and went to the hospital for the mammogram while he stayed home with our children.
The actual mammogram process was not that uncomfortable. The tech took special care of my right side as the biopsy spot was black and blue and swollen from the biopsy needle. After looking at the initial results, they did an ultrasound on my left side as well. I left the hospital without knowing anything new.
The following Tuesday, I had an appointment with my breast doctor, which my husband attended via speakerphone because of COVID restrictions. My doctor told me the mammogram ended up not revealing much, not even where my bump was located. My doctor did another ultrasound on each breast and decided that a couple of lymph nodes on my right side looked concerning, so she did a biopsy of those. Everything about the mass of my lump seemed atypical and she suspected that there could be “some invasion,” meaning more than just the DCIS that is stage 0. My cancer is considered high grade (fast-growing) and estrogen negative (which means the cancer cells can grow without estrogen). We talked about treatment options, which will definitely include surgery (what kind is still up in the air) paired with either radiation and/or chemotherapy.
We need more information.
My doctor sent out the new biopsy of my lymph nodes, and we fervently hope they come back negative, otherwise, it means the cancer is aggressive and spreading. My doctor also wants to get an MRI so we can get more accurate images of my breasts to see if there are other spots and what size this one spot truly is. Her best estimate is from feel alone, and she estimates my bump to be 4 by 4 cm, which is pretty large. Due to the cyber-attack at my local hospital, I am forced to look out of state for where my MRI can be performed. I’m also going to get gene testing done, although my doctor thinks it is unlikely because of my family history that I have a breast cancer gene. Knowing if I do or do not have a breast cancer gene could impact what kind of surgery I have and if my daughter is at a higher risk for breast cancer.
After that appointment, my husband and I started telling friends and family about my diagnosis. I really wanted to have more information and a definite treatment plan to present to the people who love us most as this nicely wrapped package.
Instead, what I can offer is my reality.
I have been diagnosed with Ductal Carcinoma in Situ – Stage 0 – Right Breast, Grade 3 Estrogen Receptor Negative and Progesterone Receptor Negative breast cancer that is high-grade with “A significant likelihood that there could be some invasion.”
My best-case scenario is that there is no invasion, that cancer is present only in this spot, and that on December 28th my breast doctor can remove it with a lumpectomy, insert a biozorb (a medical marker used to indicate the location of the bump after it is removed), I can undergo radiation, and then let this all fade into memory.
My worst-case scenario? There are different levels of “worst-case” that range from needing a mastectomy and potentially breast reconstruction (if I so choose,) along with radiation and chemotherapy to scenarios that are worse than this.
Regardless of what we find, we are hoping for surgery to happen no later than the first couple of weeks of January. My doctor told me several times that she does not want COVID and cyber-attacks to delay my treatment. And I believe her.
I am okay. I believe this will be a hard experience, but that all will be okay. I am not afraid of pain. I am not afraid of surgery or of weeks of healing. I am not afraid to lose my breasts. I am afraid to die. I do not want our children to grow up without their mom.
As my doctor, family, and friends have pointed out, I am young, generally healthy, and have many people who love me, my husband, and my children. My husband has told me many times how proud of me he is that I did not ignore the lump and that I followed up on it, and that we have caught this cancer relatively early.
Even with a breast cancer diagnosis and without definitive answers, I feel lucky.
I have a supportive husband who has been with me every step of the way. So far, I have been able to get through testing quickly once the ball started rolling after my annual exam. And the support from family, friends, and our children’s teachers reaffirms for me that we are in the best place we can be and if/when we need help, COVID be damned, we will have it.