Amy's Story: I Went From Stage I ILC to Stage IV in Months

It was late October of 2022 when I noticed things didn’t look right. My left nipple inverted. It seems like it happened overnight, but I’m sure I just wasn’t paying attention. I remember from the little shower cards that they handed out at Planned Parenthood back in the 90s that this was a sign to call your doctor right away. My previous doctor died in a plane crash and it was so shocking and horrible that I didn’t go to the doctor for a few years. I needed to set up care with a new primary care physician (PCP). I looked around and found one at the same office, called for an appointment, and got it for 11/8. I knew. I knew it was bad.

The inverted nipple wasn’t the only sign, but it certainly was the most definitive. I had been tired, more tired than usual. I also had very sore boobs (I hate the word “breast”), but I thought it was normal - maybe a sign of pre-menopause. I also had a crazy back pain, but had no thought about it being related. I had back pain for the past 15 years so that part wasn’t new, but the pain was now in a new location and was intense. So intense it actually made me cry and I’m not a crier. In fact, I had gone to an orthopedic doctor in June of 2022, got X-rays, and was told I was just getting old and to go to physical therapy (for the third time). I ignored that and just kept living my life. I don’t have the BRCA1 or 2 gene and no one in my family had breast cancer. But that innie nipple could not be ignored. I say innie, but really, it was just pulled back kind of like when you take off a too tight sports bra. The end of my nipple was almost level with the rest of my boob.

I went to my appointment and she had a feel around and could not feel any lumps or hard spots, but sent me for a mammogram. I was told there was no appointments available until January. After I made my appointment, I got a call back within the hour and she said she actually had an appointment available later the same week.

I can’t tell you if my mammogram experience was out of the norm because, most unfortunately, at the age of 48 this was my first mammogram. I was a ball of nerves. I went through the process of sticking your boobs in the squish machine and then we were off to the ultrasound. I can’t remember if I knew I was having the ultrasound or if it was a surprise, but they assured me that it was a normal step.

I looked at the ultrasound screen and I could see the lighter masses in the left breast, and then also in the right breast. It took a while for the nurse (I don’t know the proper name) to measure the masses. At the end of the appointment, she got the radiologist on the phone. I knew that was not normal! And he broke the news. He said he thought it looked like cancer and we needed to do a biopsy right away.

On November 17th, my PCP confirmed the report from the radiologist that I had tumors in both my right and left breasts. I remember driving away from that appointment in complete shock. I couldn’t feel my body. I couldn’t even cry.

I had my biopsies at 10:00 AM the day before Thanksgiving. I don’t want to freak anyone out, but the biopsy was traumatic for me. But I kept it light in the room. I joked with the radiologist and the nurses. The way I deal with stress is through humor and I also didn’t want there to be any negativity around me during this procedure. This was hard, but I didn’t want it to be any more difficult than it already was. These amazing people were here to help me and I was going to be their favorite patient that day.

In the following weeks, I learned that I had stage I invasive lobular carcinoma, a more rare type of breast cancer, making up about 15% of all breast cancers. I also learned that the cancer is ER- and PR-positive and HER2-negative.

That was the start of my cancer journey.

BUT WAIT! I have stage IV cancer. “What happened?,” you ask? Long story long, I had a double mastectomy in mid January of 2023 and they looked at my lymph nodes during surgery and it was all good. No signs of cancer. It wasn’t until the week after my mastectomy when the radiologist did further testing that they found cancer in the lymph nodes. I went in for a PET scan and found out I had several lesions on my bones. Metastatic.

Is that the end? No. That is just the beginning of my stage IV life.