MKestrel's Story: Why I Should Have Listened to the "Panic Parrot"
MKestrel is a Breastcancer.org Community member in Idaho, USA.
Until the volcano blew, I had been pretty healthy and did not go to the doctor often. I'm married, no kids, but an aunt of 9. In 2017 at an annual exam I asked my doctor if I should schedule a mammogram. She said the current guidelines were that with no family history of cancer, a mammogram was not necessary until I was 45. There was no breast exam. I didn't feel any lumps in my dense breasts myself.
I have varicose veins. Later that year I had a DVT [deep vein thrombosis] (my second) and was sent to the hematologist/oncologist. Just before the visit, I noticed a dent on the underside of my breast when I raised my arm. I knew. My first mammogram showed the cancer, stage II IDC, ER/PR positive, HER2-neu negative. I was 43. Genetics showed nothing and Oncotype DX was 21. I had lumpectomy January 2018 with no spread to lymph nodes. I had a second surgery shortly after because of DCIS on the margins. I had radiation and then took tamoxifen.
I had screening mammograms but no other followup imaging like CT or MRI, PET scan. That is apparently the standard — no scans unless there are concerning symptoms. The mammograms showed nothing at all. Neither did the tumor markers or labs. I went to all my followup visits and took the tamoxifen. I focused on my health and tried to get in shape, lost 40 pounds and was backpacking, biking, running, snowboarding. I tried to ignore what I call the "Panic Parrot" on my shoulder squawking about fears of recurrence. I didn't talk about it because the response was always, "Oh, think positive." I was finally trying to move on.
I'm not sure when the mid-back ache started. I've always been pretty active and tough things out. I also had a desk job. And then there was COVID. In 2020, I started getting muscle cramps, a back ache and in hindsight easily constipated. I blamed the usual things: pillow, desk, chair, hard workouts, stress. I tried to adjust things. In October, the Oncology PA suggested massage and therapy. It kept getting worse. In February 2021, I went to a physical therapist who felt my spine and said something felt wrong mid-thoracic and that I should get an X-ray before she worked on me. I saw my PCP and got a regular X-ray, which showed nothing, except the radiologist did mention osteopenia. An earlier bone density scan showed nothing.
A couple weeks later I was sitting at work, tilted my chin down trying to stretch and suddenly had shocks down both legs and my toes started going numb. I felt a weird belt around my diaphragm. I felt wobbly walking. Since the earlier X-ray showed nothing, the doctor ordered MRI -- brain and lumbar spine. Insurance authorization and the pandemic caused delays for over a week. The MRIs showed nothing. I was going numb from my ribs to my toes, had severe muscle cramps and went to the ER, dreading having to meet my high deductible and max out of pocket for the fourth year in a row.
The thoracic MRI showed the vertebra completely filled with cancer and compressing the spinal cord. I also had a pathologic fracture of a rib. I had emergency surgery to remove the vertebra and fuse the spine. I had radiation to the spine and rib. I was started on Ibrance then switched to Verzenio because of low ANC [absolute neutrophil count].
I finally went back to the PT and did therapy for this back ache, relearning how to walk. The numbness has improved a lot but is not gone. It's gradually worse to the toes, which are still pretty numb. I still have serious trouble walking very fast or on different levels. Basically my legs have slow internet. I am trying to exercise but get wiped out easily. The Verzenio causes the fatigue, but the best way to fight that is to force myself to keep moving. Follow up CT and scans showed no spread of cancer until this summer 2023. On PET scan I had some progression in the shoulder blade and pubic bone. I had radiation to those areas and changed to Faslodex instead of letrozole.
My family and friends are very supportive. I try to just deal with today and keep moving as much as I can. I try to enjoy little things, watching birds, gardening. I have tried hard to adapt. I try to do things for other people. I try to do things that keep me out of the black hole but some days are crash days. I'm not sure people realize how traumatic this is. It's hard for me to express things. I'm pretty tough, but I'm in pain all the time. Wrong moves set off the cramps. I have been suddenly disabled with a death sentence. It's hard to talk about how furious you are. Cancer robs so many things from you.
I am deeply grateful to everyone who treated me for this in the middle of a pandemic and to everyone who has worked so hard on advancements in surgery and oncology. In some ways I am a huge success because I am alive at all and still walking. But waiting for symptoms finds things way too late. Earlier screening with a CT or MRI would have allowed earlier treatment of the cancer before it caused permanent damage. Good quality of life matters a lot. There is a long list of things I could still enjoy doing if the disease has been treated earlier.
Since the cancer grows slowly and the newer treatments help, I will hopefully be around a while, possibly years. My oncologist said this was treated like a chronic disease. I had to work full time to have affordable health insurance. Then this year in January I had to quit working and was approved for social security disability. They did not start paying for six months, so we had to meet the high deductible on one income. We get by, but we can't go on any big vacations. We do get to go to the mountains and soak in hot springs, paddle kayaks, ride bikes, pick huckleberries. Growing up in Idaho has a few perks.
I understand there is no cure, but people want to be as functional as possible for as long as possible. I feel breast cancer should be treated as a chronic disease from day one with better attention to follow up after finishing treatment for early stage cancer. There should at least be a CT and bone scan a year later. I noticed they changed the protocol to get mammograms at 40. I noticed they changed first screening colonoscopy to 45.
My advice is don't let anyone — including yourself — minimize your symptoms or your nagging concerns about recurrence.
