My Breast Cancer Journey

It was time for my yearly mammogram. I would say I am pretty dedicated to getting it done. Some years it may have 16 months in between scans. Mostly every year. My family history includes several women with breast cancer including my mother. Completing my mammograms has always been a mixture of angst, fear and relief. This year was no different. I remember worrying I would not be able to get an appointment before the end of 2021. Typically, at the end of the year everyone and I mean everyone wants every test, procedure, and appointment before 12/31. And I was no different. I felt like this was an impossible request post COVID. My angels were on my side. I was able to get scheduled for 12/16/21.

The day comes. It is one of many tasks to complete on my day off. I was a little put off as I entered the site. It was not my normal mammogram site. No bells, whistles or pretty rooms and robes. I reminded myself this was about getting the girls squished not a spa day. I put on my big girl panties and checked in with registration. I completed my no-frills mammogram, and I was in and out. Just the way I like it.

I am a MyChart kind of girl. No need to wait for the doctor, just the results. Typically, my results would be available in MyChart at midnight the day of the mammogram. Imagine my shock and surprise when I grabbed my phone when I woke up and no results. I chalked it up to a super busy radiology department trudging through those end of the year scans. I briefly toyed with the idea of needing additional views. No big deal. My breasts were still considered dense. More than once I had to complete additional views. On my very first mammogram at age 40, I had additional views that ended with a biopsy and diagnosis of Atypical Ductal Hyperplasia. Over the 15 years I’d completed many breast MRIs , breast ultrasound and mammograms with normal results. The next day, now approximately 48 hours later, the message I needed additional views and ultrasound arrived. I contacted the center and scheduled my follow-up scan.

Once again, I arrived for mammogram and ultrasound. This time at “my place”. I felt all girly and confident, wearing the pretty, comfy robe. Both diagnostic screens were completed. The scans were ordered and completed as a diagnostic scan. Because they were diagnostic, they are read by the radiologist before the patient is discharged home. The radiologist arrives. I was excited to see her enter the room. As a women’s health nurse, I was familiar with this radiologist. Most providers wanted to read their scans because she was that good. She sat and began to review the scans. She used the words low risk numerous times. At the end of the conversation, she recommended a repeat ultrasound and mammogram in 6 months. I respected her recommendation. I remember staring at the screens with the images of my right breast and moving my gaze back to her. I told her I came in expecting a biopsy and my plan was for biopsy. I’d spent a week pouring over the results of the original mammogram. I knew my plan. I had hoped it was also her plan. Her face showed her disappointment in my choice. She rose from her chair, shook my hand, and let her staff know to help me get the biopsy scheduled.

On the morning of my biopsy, I received a Facebook message from a Medical Assistant friend. She said she was scheduled to be my MA and asked if I was ok with her rooming and taking care of me. I’d worked with her before, and she was a great MA, so the answer was yes. I underestimated the feeling of relief I experienced when she came to room me. The familiar face and the hug sent a huge dose of oxytocin into my stressed filled body. She was able to distract my mind with crazy times we shared. Which included many adventures involving alcohol as well as being by my side for my first and only tattoo.

She led me to the room where two stereotactic biopsies would be performed. A stereotactic biopsy is completed using mammogram and computer imaging to identify the abnormal areas. The room was a traditional exam room. It was the chair that caught my attention. This chair looked like a chair from the nursing home used to feed old people. The vision of being strapped in and fed some awful food made me smile, just a little. I was informed my breast would be compressed just like with the mammogram while I sat in the “old people chair”. The doctor would locate the abnormal areas, take a sample, and leave a clip. The clips would be used for future scans to identify any changes. For the most part the biopsies were painless. What I remember most was the “pop” sound. Each pop sounded like the release of a champagne cork. The biopsies ended with the doctor saying champagne pop. It was loud and even though she announced it, it startled me. Once the biopsies were completed my friend bandaged my battered breast and I headed home to stuff ice in my sports bra.

Four days later my cell phone rings . I recognize the number. I have been waiting impatiently for this call. I dismiss the incoming work call and answer the call from the Women’s Center.

The doctor started by verifying my identity, name, date of birth. I was struggling to hear what she wasn’t saying. Listening for tone. I couldn’t tell what she was about to say. Once she confirmed I was me. She said the dreaded words… “I have good news and bad news. Good news first. Biopsy A is atypical ductal hyperplasia”. I didn’t have time to process completely that ductal hyperplasia was the good news when she said,” biopsy B shows ductal carcinoma in situ”. She goes through all the routine things. I hear but I don’t hear. The call ended and I struggled to breathe, to think. I have cancer? Yes, I have cancer. My mind was swimming. The dog started barking. The front door opened. My 17-year-old son walked in. It was half day at school for him. There was no time to filter my thoughts, spin my words. I met him at the stairs, crying and making no sense. I finally got the words out, “ I have breast cancer”. I still worry how much damage I caused. He seemed to manage well.

No one forgets the day they hear the words you have cancer. What now? What next? All I could think about was losing my breast. DCIS is a very early-stage breast cancer found in the milk ducts on mammogram. The cancer cells are contained in the milk duct. It often appears as a cluster of microcalcifications. Approximately 10-15% of new cancer diagnosis are DCIS. Sometimes a woman may find a lump or have nipple discharge but often at this early stage there are no symptoms. If left untreated DCIS can leave the milk duct and become invasive. When DICS is treated quickly and appropriately the prognosis is good. I was told more than once, if I had to have cancer this was a good one.

Ok, so I have a “good” type of breast cancer. Hmmm. That did not ease my mind. I played every worst case scenario over and over in my mind. The next step in my journey was genetic counseling. My family history includes a grandmother, mother, and aunt with breast cancer. Genetic counseling sounded like a slam dunk for positive BRCA gene. BRCA is a gene mutation that can be found in a blood sample. If this mutated gene is present there is a significant increase risk of future more invasive breast cancers. I agonized about even completing the testing. With my history I had to be BRCA positive. BRCA positive would mean a serious conversation with myself about mastectomy. A conversation I was not ready to have. So, my initial response to genetic testing was a resounding no. I’d grown accustomed to my breasts. I researched and viewed what felt like a million pictures of reconstruction. Read at least that many stories that included infections, inability to complete reconstruction. I wasn’t ready for any aspect of this. The answer continued to be no for genetic testing until I thought about my children. The potential they could have the gene was more than a little scary. I relented. I scheduled the appointment. The counselor was great and gave me great information.

For the first time I pulled into the cancer center parking lot. I already did not like this place. The building was beautiful, the people were friendly, but I couldn’t make myself like it. I walked cautiously to the counter. Still willing to get my blood drawn but scared crapless about the potential results. Blood drawn. Task complete. Maybe a slight relief. The 3 weeks wait for results began with a strong feeling I was headed for mastectomy.

3 weeks later the results are back. I received a MyChart message to schedule a visit with the genetic counselor to review results. Seriously?! Still more waiting. On the day of the telephone visit, I scheduled a date with my bestie. We sat on her sofa talking about the raccoons that made their home under her house. The phone rang. I am almost certain I stopped breathing for a moment. The genetic counselor goes through the perfunctory things….name and date of birth. “Is this a good time to talk?” The words in my head shout “None better”. I had been waiting a lifetime for this conversation. She says she is happy to tell me I do not have the BRCA gene. Whew! Hallelujah! One hurdle cleared. For now, the mastectomy decision is off the table. I am incredibly relieved. I get to keep my breast.

Almost imperceptibly my mind moves to the next hurdle. Surgery. Now I know it is lumpectomy. The overthinking head chatter began again. What if the surgery tissue is not the same as the biopsy? What if he gets in there and there are more spots, or it has moved out of the milk duct? Did I mention I am a chronic worrier?

The week before surgery we traveled to Florida for the week. A week spent on the beach. A chance to let my mind relax, to enjoy hanging with my partner. Big plans to go on my first hot air balloon ride. I needed to mark this crazy, life altering event with a big adventure. Well, my best laid plans were not on God’s agenda. While walking on the beach I got a call from the hot air balloon people. “It’s too windy. Not safe to take the balloons up. We can reschedule.” We couldn’t reschedule. We were heading home the following day. So, no big adventure.

We arrived home the night before surgery. My mom and sons were in my town waiting for me. We did what we do best. Eat. Hangout. After dinner my mom and my oldest son go to the hotel for the night. Mom is allergic to dogs, and I have a very hairy Irish Wolfhound aptly named Chewbacca. My baby boy and I headed home. The entire way he is angling to not go to school. The boy had a serious case of senioritis. I reminded him he skipped enough days and surgery is in the afternoon. We agreed he could stay home to keep me company after surgery.

Surgery morning, I wake up with a small case of nerves. I hop in the shower for antiseptic shower. The whole time grumbling about it drying my skin. Part of the prep for surgery is no oils, no deodorant. I feel like the lizard that lives in my son’s room. That was only the beginning of my skin drying adventure. We arrived at the hospital. After they tortured me with stepping on the scale, they take me to my room where they give me three packages of antiseptic wipes for my body. Seriously?! How many germs can one girl have? I so can’t wait for my morning shower with moisturizing body wash and jojoba oils.

I am all disinfected, sitting in my sexy hospital gown when a nurse comes in to start my IV. My surgery is on my right breast, so she was perusing the left arm without much luck. Two pokes later, the IV is running smoothly and I am off for wire localization. The radiologist uses mammogram to insert a wire near the abnormal areas. The wires are used by the surgeon to guide him to the cancerous area. For me that meant two wires inserted into my right breast. I felt like a cell tower. Now I was ready for OR . Wheeled into the OR and began counting to ten…

See you on the other side.