In 2019, I was diagnosed the day before my 42nd birthday with DCIS - Ductal Carcinoma in Situ- Stage 0 Breast Cancer. I sat in shock in my surgeon’s office with my best friend taking notes next to me as the doctor discussed the findings of my biopsy the week before.
I walked out of the office with appointments to make, a tentative surgery date on the calendar, and a feeling of overwhelm cascading over me. I had no idea how to break the news to my husband and high school-aged sons. How could this be happening to me? I didn’t have time to be a breast cancer patient.
How did this process start?
It was my annual screening mammogram that caught my DCIS. The mammogram revealed calcifications in my right breast that prompted a diagnostic mammogram and an ultrasound. After all that imaging was complete, I was referred to a surgeon for further care.
I was no stranger to abnormal imaging because I have several fibroadenomas in my breasts. These are benign breast findings and feel like marbles in my breasts when I do my self-exam. I had seen this surgeon several years previously for a biopsy on these findings. I was not excited to be heading back to another appointment with him.
I came prepared with lots of questions for my appointment. However, the surgeon was focused more on reassuring me that it probably wasn’t cancer rather than addressing my concerns. The appointment abruptly ended when he got called away on an emergency. I had more to ask, but he was gone. The nurse directed me to the scheduler to get a biopsy set up.
Something inside me went off like a warning bell. I felt frustrated and scared, and I hadn’t been diagnosed yet. I needed to have a surgeon who would take the time to answer my questions.
I decided to seek out a second opinion. This decision turned out to be one of the most important things I did during my diagnosis process. The appointments and care at this second medical group were thorough, individualized, and not rushed.
Imaging Galore and Biopsies... So Many Biopsies
Once I decided to establish care with my new breast surgeon, he ordered new imaging- mammograms and ultrasounds on my breasts and then biopsies on the calcifications. One of the things I appreciated about the diagnostic imaging at this new facility was having a conversation with the radiologist immediately after my imaging. I was able to ask him about my calcifications and get his opinion on them. He was especially concerned with them because of their shape and urged me to get a biopsy.
Throughout my diagnosis process, I ended up having five biopsies. The first and second biopsies were on the findings from the mammogram, and the other three happened after my MRI showed areas of concern in the opposite breast.
The biopsies were what I hated the most throughout my diagnosis and treatment. During my first mammogram-guided biopsy, I passed out during the procedure. Thankfully the radiologist was able to continue the biopsy and get a sample.
I made sure to warn the radiologists before my other biopsies that I might faint. I did better during my ultrasound and MRI-guided biopsies because I was lying down. There was something about sitting up during the mammogram-guided biopsy that didn’t work for me!
I opted to have genetic testing done because of my age at diagnosis. My surgeon had recommended a lumpectomy for my DCIS, but wanted to make sure that I didn’t have any variants that would impact my recurrence rate.
I was thrilled when the additional biopsies performed after my MRI were benign, and my genetic testing came back clear. These final steps in my diagnosis meant that I could make a surgical decision.
I ended up deciding on a lumpectomy to remove the DCIS. The DCIS was only about 4 mm, and my surgeon was confident he could remove it and minimize any disfigurement. He also removed a benign fibroadenoma from my opposite breast during the surgery.
I had never been under general anesthesia before, and I was terrified of the process. When I talked to other people about my fears, they made it seem like no big deal. But it was to me. I remember talking to my nurse just before they took me down to the surgery floor about my fears. She encouraged me to think pleasant things right before they put me under, and I would wake up feeling those emotions. So as they put the mask on me, I thought of my husband and the wonderful times we’d had together.
The next thing I knew, it was all over. I laughed and cried. I couldn’t believe it was over. I woke up feeling relieved and happy.
The lumpectomy was done as an outpatient procedure, so I could come home that night. It was wonderful to fall asleep in my own bed. The following day I woke up, disoriented at the light streaming through the shutters. For the first time in months, I slept all night and woke up without anxiety.
A few days later, I got a phone call from my surgeon. He was in between surgeries but wanted to call me to say they had gotten clean margins in my lumpectomy. So, I wasn’t going to need another surgery! What a relief. I could concentrate on recovery and think about the next treatment options.
Post Surgery Treatment: Radiation and Tamoxifen
After a few weeks of recovery, my surgeon cleared me to see the oncologist. He discussed that I had the option of doing radiation and taking tamoxifen for five years. The radiation would eliminate any DCIS not yet visible on imaging, and the tamoxifen would reduce my risk of recurrence by lowering my estrogen levels.
I made an appointment with the radiation oncologist, but I wasn’t sure if I would go through with radiation. The thought of getting the treatment was pretty terrifying. I had done a lot of research, and I knew that pairing radiation with a lumpectomy would reduce my risk of getting breast cancer again. My family had been through so much disruption with my diagnosis and surgery over the last few months. A part of me wanted to be done with this cancer treatment and skip the extra month of treatment.
My radiation oncologist was amazing. During our consultation, she addressed every single one of my questions. She was patient and also extremely knowledgeable. As we discussed whether or not I should do radiation, she was candid with me. She said, “If you were older, I wouldn’t advise you to do this treatment. But you are only 42. Hopefully, you will have 40 more years of life. There’s a possibility other areas of DCIS are in your breast, but imaging can’t see it yet.”
That did it for me. After that, I was committed to the radiation.
I had 20 treatments of radiation spread over four weeks. It was exhausting, and my skin burned and peeled twice. It was tough to go through Christmas season 2019 going to treatment every day. My husband was able to work from home at that time and drive me to my daily appointments. The location was close to our house, so it was about an hour from start to finish each day. I had a severe case of radiation fatigue and couldn’t do much during that month except rest and put lots of lotion on.
I finished radiation on December 23rd, 2019. That Christmas with my family was precious. We had made it through the trauma of cancer together.
I began tamoxifen on January 1st, 2020, and was able to stay on the medication for about nine months. Unfortunately, the side effects, especially the persistent rib pain, impacted my quality of life to the point that my oncologist recommended I stop taking it. Nevertheless, I’m happy I tried taking it. I’m also grateful that my oncologist was willing to listen to my concerns and cared about my side effects.
Life After Treatment
I was surprised at how hard this cancer treatment was on my family and me. I was diagnosed at stage 0, didn’t need chemotherapy, and only had one surgery. Yet I was physically, mentally, and emotionally drained in ways I had never been before. I realized that a Stage zero diagnosis doesn’t mean zero challenges.
Shortly after finishing radiation, I decided to write a book about my experiences. I didn’t tell anyone what I was doing. Each morning I typed until I had nothing left to say, then closed the lid of my laptop and went along with my day. For months this was my routine. I poured out my heart, delved into the emotions, shared what I had learned, and then went back to my day as a virtual school parent and homemaker.
In the spring of 2020, I realized I had the first draft of a book. I was delighted that I’d followed through with my writing. I had always dreamed of being an author but had never completed a manuscript. Breast cancer taught me that I might not have unlimited time on the planet. I needed to share what I had been through and help others facing the same diagnosis.
Over the past two years, I have embraced a new calling of being a writer and a breast cancer advocate. I didn’t expect that a surprise diagnosis of DCIS would lead me to this new vocation, but each time I’m able to share my story and offer encouragement, I feel inspired to continue.
Connect with Jennifer via social media:
Twitter (@mmejendouglas) : https://twitter.com/mmejendouglas
Instagram (@mmejendouglas) : https://instagram.com/mmejendouglas
Thank you for sharing your story, Jennifer. SBC loves you!
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