COVID has disrupted our lives in many ways in the last couple of years. While I have seen specialist MDs and health care practitioners for the last five years, I neglected to go to a PCP (primary care physician) during COVID. So, I decided in April to find a PCP and get a physical. She recommended a lot of screening tests that I haven’t had in a while and the results were rather surprising…
Bloodwork – slightly elevated liver enzymes
Abdominal ultrasound – small kidney stone and some mild arterial calcifications
Colonoscopy – 10 precancerous polyps
Mammogram – breast cancer
The last one was shocking and worrisome …cancer. The imaging technician gave me the name of a surgeon and told me ominously that I might need a consult. But before any consults, I was quickly scheduled for more imaging that included a diagnostic mammogram, ultrasounds, MRI with contrast and a biopsy.
I was worried about the biopsy since I have a form of Chronic Regional Pain Syndrome (CRPS) from a toe fracture, as well as full body idiopathic small fiber from a toxic exposure. Any sticks, injections, scratches, toe stubs, etc. cause my nervous system to overreact. A biopsy potentially could cause a worsening of my pain and possible spread to other areas of my body. Unfortunately, the biopsy has been the most difficult part of my breast cancer journey as it seems the inserted marker is a major irritant for me.
About a week later, I had an appointment with a local, well regarded surgeon who specializes in breast cancer. The cancer was a small tumor of the HER- EP+ grade 2 stage 1 type – sort of the rank-and-file type of breast cancer. I was given two options: lumpectomy with radiation or mastectomy without radiation. The surgeon was firm on the two surgeries. I sat there feeling hopeless.
Both options are standard-of-care in treating breast cancer for women ,but I’m not like most women. Because of CRPS and small fiber neuropathy, I am in various levels of pain in random parts of my body 24/7. To have surgery in an area of the body rich in nerves made me despondent.
Immediately, I told the doctor that I had CRPS. Like most healthcare providers I have seen in the last five years, she was not acquainted with this disorder. I tried to explain that I needed special care such as extra nerve blocks and ketamine in my anesthesia to prevent spread. She politely nodded, but I didn’t think she understood the damage either of these options could do . The cancer would be removed, but my life would descend into more pain.
The date for the surgery was set a month in advance (luckily my cancer wasn’t aggressive) for June 26th. I embarked to put my life in order since I am single and care for my elderly, deaf father and small dog. I spent my days trying to figure out how I was going to manage finding care for the three of us while researching mastectomies, electric recliners and caregivers. I joined a couple of holistic breast cancer Facebook pages and spent evenings lurking to glean tips and information. By chance, I found another option for my cancer surgery: Cryoablation.
Cryoablation is the freezing of the tumor with liquid nitrogen. The MD inserts a small probe and freezes it with several centimeters of margins. It takes an hour or more depending on the size and number of tumors. There’s little down time and studies show that cryoablation produces similar outcomes as surgery.
I immediately began to look for more information and found a cryoablation support group on Facebook that I joined. I perused through the posts trying to understand more about the procedure, doctors who performed it and associated costs. I noticed most of the women saw or were going to see a doctor in California. This MD is a breast surgeon who specializes in minimally invasive procedures for breast disease. He is one of the leaders in cryoablation for breast cancer, and is heading up several studies about it.
I called the doctor’s office and and scheduled a consult. Two weeks later, I had a TeleMed with the doctor to discuss my case.
I was nervous about explaining my CRPS and small fiber neuropathy and my need for extra care and anesthesia. I specifically wanted some ketamine to protect me nerve pain spread. He was not familiar with CRPS, but was willing to bring in an anesthesiologist to accommodate my request.
On July 26, I flew to California with my friend, Karen, for my procedure the next. I met with the doctor beforehand, and then the anesthesiologist who prepared me for the sedation. I was grateful that the doctor honored my request for sedation and that the anesthesiologist was familiar with CRPS and other pain disorders.
The whole procedure took 45 minutes, but I was there for two hours because of the anesthesia. Afterwards, I rested for the day. I was sore and my neuropathy was flaring, so it was a couple of rough nights.
The next day I went to the office for my follow up. The doctor checked me over and was pleased that there was minimal bleeding from the puncture of the probe. He told me he froze my 2cm tumor plus 7cm of margins around the tumor. He said I didn’t need radiation or chemotherapy per the MammaPrint (a diagnostic genetic test on the tumor) and my imaging. He recommended I proceed with aromatase inhibitor therapy with an oncologist of my choice.
Afterwards, Karen and I went to Santa Monica to see the ocean, walk along the beachfront, and have lunch. If I listened to the MD in Utah, I would be in excruciating pain and in bed trying to recover, if ever. I feel lucky I found this option because there’s been so little down time. My breast is sore and swollen, but not disfigured. My main issue is the pain from the biopsy.
Moving forward, I am going to try the aromatase therapy with a local oncologist plus a cancer coach and a naturopathic oncologist. I want to minimize any side effects from this therapy, plus kill any errant cancer cells.
I can’t believe how fortunate I was to have stumbled across cryoablation instead of following through with the mastectomy. I have gone back to living my life as I did before the cancer diagnosis, and I am truly grateful.
Always remember to take a breath and look for options. I’m so glad I did.