An educator turned advocate, Terri, a wife, mother, and teacher is always on the move. But a breast cancer recurrence after 12 years set her off on a different path.
I received my first diagnosis in 2002 after finding a lump in my left breast. I have always had small, fibrous breasts, but felt a pea-sized nodule. We had just left Seattle for Houston following a job opportunity for my husband, and I felt very fortunate to be in the hands of the experts at MD Anderson, but I was walking into a new doctor’s office in a new town. In the radiology waiting room there were magazines with pictures of women who had had mastectomies. I remember thinking, oh my goodness, is this going to happen to me?
After the mammogram, they ordered a biopsy, which I had on New Year’s Eve day. The technical staff that was there was not first line. It was the worst biopsy ever. I came out of there so bruised and in so much pain. And then I had to wait two weeks to get results.
I was home alone, my husband an hour away at work when the news came. It was an early ER/PR+ cancer, stage 1. I remember sitting there when the doctor called, my hand trembling so badly I could hardly write notes. I called my husband and he drove home, arriving quicker than he ever had before — I do not want to know how fast he was driving!
Our oldest son was a freshman at college. He did not even have a cell phone. We had to call the university police to find him and get him out of class. Of course, he panicked. But it was so weird because his best friend, who was also there at college but not someone he saw frequently, bumped into him as he was on his way to call home. His friend saw the look of panic on his face and offered his phone. It was really hard on him being so far away when he received that news, and not home for three months. Until he physically saw me and knew I was going to be ok, it was so difficult for him, and for us to see his emotions. After we spoke with him, we waited for our youngest son, who was in the 7th grade, to get home from school to tell him. Then, we fell apart together.
The first breast surgeon’s lab mixed up the slides with someone else’s in the office, so I had to go back to get a second biopsy. That was hard. But I knew I would be steelier if I went by myself, so I told my husband just to drop me off. The second time, I had a wonderful radiologist who actually walked the slides down the hall to pathology herself to ensure there would be no mix up.
I had a lumpectomy, but they did not get clear margins, so I had to go back for a second procedure. Then they started me on chemo — six rounds over 18 weeks. It just sucked me under, badly. My white and red blood cell counts bottomed out and I had neutropenia. I lost all my hair, had mouth sores, was weak and even had to give myself shots for the neutropenia.
Knocking it Out
After that, they gave me a month reprieve to regain a little strength, and then started me on targeted radiotherapy. My skin got a little itchy and dry, but it was fine. I never peeled or blistered. When I had finished that course of treatment, I started five years of tamoxifen.
It took me fully a year to get my strength back. I tried to go back to work part time, but even that was too much. After being a teacher for so many years, I could not even handle being a teaching aid because I didn’t have the strength. At the end of the day, I didn’t have the energy to walk in the door at night. That is when I realized I needed to start working on my health.
I focused on my health exclusively for 6 months. We had a YMCA nearby, so I started going to the gym, eating healthily, and slowly getting my strength back. It took almost a year to physically feel better, but I was still emotionally fragile, still worried about a recurrence. That fear waned over time, but it wasn’t until the following fall that I returned to teaching. I was so happy to be back in the classroom.
In 2008, we moved to Tucson. I was teaching and feeling great, raising my sons, and getting on with life. A few years later, I realized that I wanted to mentor other teachers in the classroom and in 2014 went back to school to obtain a M.Ed. in teacher leadership. I was knocking out a 4.0, just steam rolling my way through it while continuing to go to the gym and be fit.
Towards the end of my first semester, I went for my yearly mammogram and got bad news. I had a recurrence in my left breast and a new primary cancer in my right. That was tough. My husband was overseas and my youngest son, though living at home, was taking such a heavy load in college I didn’t see him much. I felt very much alone. But I also had attitude, like, “go ahead, hit me again.” I don’t think I even cried. We dealt with this once we could do it again. My husband offered to come home right away, but I told him to finish up, I was fine. He came home a week later.
I was pretty certain I was headed for a double mastectomy, but my surgeon, who I thought was great, didn’t want to do anything until we completed some more tests, which spiraled down into a bad month of misdiagnosis. First, they did an MRI that revealed some lesions on my spine, which had been spotted at MD Anderson as well. At the time they were checked and determined to be benign. I had those records and thought they had been sent to the Arizona Cancer Center, but after the MRI, they said I needed additional thoracic imaging to understand the lesions. Based on that, the tumor board made the call that the lesions were cancerous, and I had stage 4 metastatic cancer. I am not sure the breast surgeon agreed, and I will never know for sure, but my sense was the oncologist made the decision in the tumor board.
I was devastated.
Next, they did a PET scan. I got a call the same day. The oncologist said nothing lit up on the screen. It was the first glimmer of hope I felt in a week. That’s when I asked if they had the records from MD Anderson. It turns out, they did not. I had a bone scan the following week, and then went back to the oncologist’s office. “We are letting this go,” said the oncologist. “There is no need to do a bone biopsy of this lesion.” I was so confused when I found out they didn’t have my MD Anderson records. How did that fall through the cracks? And then a week later, she tells me “we are going to let this go,” Really? I have PTSD every time I have to go for a scan, but at least I had comfort knowing I did not have metastatic cancer.
I had the expected double mastectomy. The preliminary analysis from my surgery suggested I did not need chemo — there was no lymph node involvement. But we were still waiting for the onco-type test results. When the call came with the results, the oncologist said she wanted me to do chemo. Given all the back and forth about the diagnosis, I decided to get a second opinion, and that oncologist gave me peace of mind and honored my decision not to have chemo again.
In the Vortex
Even though I chose not to have the chemo, I stuck with that first oncologist for a couple of years anyway. At one point I faced her head on and said, “First you said I was stage 4, then you delayed sending in my onco-type test scores. Please understand that you have to be careful how you tell patients information.” What she should have asked was, “Have you ever had lesions on your spine before? Any back pain?” I would have said, “Yes, look at this” and made sure she had seen my prior records.
I was angry, but it made me more determined to take control of my treatment plan going forward. Once I had confronted her, I could let go of my anger. And it was the beginning of my advocacy. What kept me with her was that she listened to me. She pulled her chair up right in front of me and really listened. She said, “We all learn from experiences, and this has been a learning experience to me.” As a teacher, that resonated with me.
It was a big year. There was a lot for me and my family to deal with, and my husband lost his mother that year too. It wasn’t any easier telling my sons the second time around. In fact, I think the hardest part of the whole cancer thing was actually telling loved ones, taking on the responsibility of their emotions while dealing with my own. As my younger son put it, “it was a real mind fuck.” It is really hard to know what is going to happen and it becomes a vortex that just sucks you down. I am sure there is long lasting emotional impact for all of us.
Giggling with Delight
The day I went to the breast surgeon to talk about a mastectomy, she told me about all the options. When she said I could use my own tissue, suddenly implants just seemed wrong. It is a very personal decision but given the other options I knew they would never have felt right to me. Instead I opted for a DIEP flap reconstruction, which uses lower abdominal fat, skin, and blood vessels to rebuild the breasts. My surgeon said it was the gold standard. But I wanted to find a plastic surgeon who had a very high success rate with that particular type of reconstruction. I looked all over the country, examining doctor credentials and success rates before choosing a microsurgeon in San Antonio.
It’s a big surgery and I was in the hospital for five days, but I had hardly any pain. I did have back fatigue that required me to adjust over a period of about 10 days, but very little pain. It was amazing. I lived without breasts for seven months which was debilitating psychologically for me. But when I woke up with those body parts back, I was giggling. I felt like an amputee who had lost an arm and woke up one morning to find it restored.
Recovery took about six weeks. I walked every single day starting the day after surgery. I had lifting restrictions, was very cautious about bending and twisting but able to gradually get back into a normal routine after about a month of help and being pampered. Also, I started PT the week I returned home from surgery to work on scar adhesions and reduce fat necrosis. And, I increased my protein intake to improve healing.
A Real Awakening
I had always been very small breasted. At the time of the mastectomy, I had skin sparing, nipple sparing surgery, and then went from a size A to a size C cup, and lost belly fat in the reconstruction. It was mind-bending. I had a figure at age 58 for first time in my life and new wardrobe options! It was a real awakening, like a caterpillar emerging as a butterfly!
Typical of most reconstructions, I had to go through a phase 2 fat grafting and scar revision procedure about six months later. And it can take another 6 months to a year for scar healing and psychological healing to embrace your new body, but I am done for life. This is it. My scars faded so beautifully that you don’t see them, but I know they are there, and they are a reminder of what I went through — an important part of the psychological healing.
I learned so much in the process and discovered the benefits of shared decision making with my breast and reconstruction surgeons that I started a blog to share my experiences. What began as sharing my story became the inspiration for opening a non-profit organization to help other patients. I realized that until a cure for breast cancer is found, there will always be a need to educate and inform others about their options for breast reconstruction after mastectomy. I am still teaching, just about a different subject these days.
You can read more about Terri’s work and learn about breast reconstruction options at DIEPCFoundation.org