Mandy's Story: Living in the "In-Between" After Treatment
I was diagnosed with stage IIIb triple-positive inflammatory breast cancer July 7, 2023 at the age of 39, after noticing my breast getting a small, reddened area that quickly turned into a swollen and tender breast with orange peel texture over the span of a few weeks.
It was hard at first to get a diagnosis because it was assumed I had mastitis (no, I was not breastfeeding) and my almost 5cm mass was actually missed on an ultrasound just 4 days prior. I knew something was wrong and feared cancer, but finding out I had triple positive grade 3 aggressive breast cancer with positive lymph nodes was still a complete shock. I felt like I was staring death in the face and started to envision life for my young daughters without a mom. I still remember being called back to get an ultrasound sound after the radiologist had looked at my mammogram. The radiologist said she was concerned by a mass seen on the mammogram and showed me on the ultrasound why it was highly suspicious along with the enlarged lymph nodes.
I remember telling her over and over that I didn’t have time for cancer, my 7-year-old daughter was scheduled for major surgery in just a few days for her clubfoot that had relapsed. I had spent months preparing for her surgery knowing she would be non-weight bearing and needing help with everything that summer. How could I fight cancer and care for her? I remember calling my husband, who was watching our girls, and telling him I didn't know what to do and I didn't want our girls to see me suffer or look sick. I couldn't contemplate fighting cancer during this phase of motherhood.
Waiting for treatment to start is the worst stage, knowing you have a deadly cancer in your body that you just want to get out. I spent a lot of time asking God for strength and provision and lamenting how quickly life was already changing. As slow as it felt, things moved quickly. I got my port placed the next week, and after meeting with three different hospitals, I picked my care team. With inflammatory breast cancer being more rare and aggressive, I wanted to make sure I had a team that had the experience to handle it.
I had 6 cycles of TCHP. Chemo was awful, the nausea knocked me flat for almost a week after and I had horrendous diarrhea and mouth sores. My hair fell out after the first treatment. However, I handled it well in terms of my bloodwork and I never had to delay treatment except when I got COVID in the fall. We were surrounded by friends and family wanting to help with taking the girls places and bringing us food. It was such a blessing to our family.
After chemo was done, I had a non-skin sparing modified radical mastectomy. With inflammatory breast cancer, it's important to take as much of the skin as possible since the cancer is also in the skin. We got the news that all of my lymph nodes came back clear, but there was still some residual cancer in the breast tissue. I was classified as an RCB-2. Having residual cancer bought me 14 more cycles of a targeted chemo called Kadcyla.
A month after surgery, I started radiation. I had to do radiation twice a day, which completely wiped me out. I felt like I spent my month just going back and forth to the hospital. The worst part was the awful sore throat I got from the radiation treatment, and it made it so hard to eat or drink anything.
I also started on hormone therapy during this time: Lupron shots to keep me in menopause (I was already put into menopause from chemo) and exemestane to block any other additional estrogen in my body. The joint pain and hot flashes made me more miserable.
I started going to PT weekly for lymphedema and range of motion issues in my arm from the mastectomy and tight tissue from radiation. I had periods where I had to wrap my arm from shoulder to fingertips for the lymphedema.
After finishing Kadcyla, almost a year later, it started to feel like I was turning a corner. I had a prophylactic mastectomy on my healthy side and DIEP flap reconstruction a year after finishing radiation. Recovering from DIEP flap was long and hard (including finding out I had 3 broken ribs), but it was mentally healing to no longer be completely asymmetrical.
After a few months, I started a clinical trial through the Mayo clinic that my hospital coordinated. The trial was a breast cancer vaccine for women who had residual cancer and went through Kadcyla. I was a little reluctant because the trial meant going back to appointments every 3 weeks for the vaccines, but I knew I needed to throw everything at it to help prevent recurrence.
The appointments were long. I was usually at the hospital 3-4 hours, much longer than I thought it would take. I finally got my last series of vaccines in August of 2025, and then just a couple weeks later I had my second phase of my DIEP flap and a hysterectomy with ovary removal done. Having my ovaries removed meant no longer getting the Lupron shots, and I was thankful to get the hysterectomy done as well after the surgeon discovered a decent amount of endometriosis. Thankfully, this recovery hasn't been too bad except for a couple of wound healing issues. I have learned that my tissue that went through radiation will always take longer to heal.
Through all this, life has moved on. My girls, who were 7 and 10 at the time of diagnosis, are now 9 and 12. I turned 40 while going through chemo and radiation. My job as a nurse has pretty much been on hold, except for a few shifts I was able to pick up between treatments and recoveries. My husband changed jobs in the beginning of my diagnosis. Life doesn't stop because you have cancer.
Now, as I enter this survivorship phase, I am struggling to mentally heal from the pain and loss of the last couple of years. I am so thankful that so far I remain NED(no evidence of disease), and I often feel guilty for not celebrating that more. Being stage III is hard in that you don't qualify for routine scans, so I have not had a full body PET scan since diagnosis. I have had some CTs and a bone scan for the clinical trial, but sometimes it's hard to truly trust that the cancer is gone. I don't want to move through life waiting for the other shoe to drop, but I also want to be aware in watching for signs of recurrence. That can be a hard balance when you don't trust your body, after all, it's already failed me once. Relationships have changed. I know my daughters no longer see me as their unbreakable mom, but instead often see me as not being able to do a lot of things after having so many phases of restrictions. My 9 year old recently told me that she doesn't remember me without cancer. That comment still saddens me. Cancer affects your marriage when you struggle with body image issues of a majorly changed body. Cancer affects friendships. At the beginning, I was surrounded by friends wanting to help. However, now that I don't need help with meals or appointments it can start to feel lonely. I'm not back to life before cancer, but in new territory that can feel isolating.
I have recently finally reached out to a group of local breast cancer survivors, and I am hoping to find some community there. Cancer can leave you feeling like you have broken into a million pieces and no matter how hard you try to repair them, they don't come together the same. My prayer is that I will find a new path and find a way to use my experiences from these past 2 years to make stronger relationships with my Savior, my family, and my friends. I hope my experiences as a patient will help me to be a stronger nurse as well. I know what I want out of this, but I am still trudging through some mud from these past couple of years to get there. So, until then, I am living life in the in-between.
