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Sharon’s Story (Her2 Breast Cancer)

sharons-story-her2-breast-cancerIn April 2018, I was diagnosed with HER2+ breast cancer, after having a mammogram because of a nipple discharge. Affecting about 1 of 5 breast cancer patients, HER2+ breast cancer is when breast cancer cells test positive for a protein receptor called HER2 (human epidermal growth factor receptor 2). Excessive amounts of HER2 can cause breast cells to grow and divide uncontrollably, resulting in breast cancer. I met with a breast surgeon who recommended immediate lumpectomy and radiation, and if I took any time to think about it, chemotherapy.

With the help of two friends experienced with their own cancer battles, I chose to follow a holistic treatment path. I researched everything I could and threw it at the cancer –supplements, IV therapy, even extensive psychotherapy to address past trauma and any emotional links to my breast cancer. In a Facebook breast cancer support group, someone recommended I go to the Cancer Center for Healing in Irvine, CA, where I met with a doctor who suggested I research cryoablation. Through a different Facebook group, I learned about a well-renowned breast surgeon experienced in cryoablation for breast cancer in Glendale, CA.

Cryoablation has been in use for decades in the treatment of cancers of the kidney, prostate, and other organs, but is relatively new in its use for breast cancer. There are still several studies investigating its effectiveness, but initial results are very promising. After sending all my records to the doctor, he accepted me as a patient “off protocol” (meaning that I’m not a part of a study and need to pay out of pocket). During our consultation, the doctor suspected my nipple and areolar skin changes were Paget’s disease of the breast and recommended a biopsy. Despite having had several other doctors evaluate my nipple, he was the only one who recognized the Paget’s disease. Since I was already sure after lots of personal research it was Paget’s, I just asked him to remove it and he agreed.

On September 30, 2020, I arrived at the doctor’s office. Being as meticulous as he is, he did his own ultrasound and found a second tumor that was previously missed by 5 radiologists. He proceeded to numb the breast, do a biopsy of the newly discovered tumor, and made a very small incision. Then using a Cryoprobe, a needle-like instrument through which liquid nitrogen circulates to treat cancer by freezing it until it is dead, he froze the first tumor. The freezing lasted about 8 minutes followed by a 10-minute thaw phase followed again by another 8 minutes of freezing. The freeze zone goes approximately 5-10 mm beyond the tumor to allow for clean margins. The freeze/thaw cycle injures the cancer cells and killing them. He then removed the nipple and sent it to pathology. Once the stitching of the wound was done, the doctor proceeded to freeze the second tumor.

The procedure took about two and a half hours. It was amazing. A simple tiny incision versus a scar and no significant recovery time. The only side effects were swelling from the saline injected to protect the skin from the freeze and a lump of dead tissue. The swelling dissipated in a few weeks. The lump continues to dissolve over time. I left the office with a dressing on my incision and a Band-Aid where the cryoprobe was inserted. We drove the almost two hours home and I made dinner. The next day I went back to my normal activities.

The biopsy of the second tumor also came back HER2+. The nipple biopsy came back Paget’s, as I expected. Following the doctor’s recommendation, I did 6-months of Herceptin infusions to kill any HER2+ breast cancer cells remaining in my body. A follow up ultrasound three months later found no evidence of disease. At six months, the MRI and ultrasound were clear, and the biopsy came back benign, no malignancy. Now, a year later I can’t feel the mass.

I feel so blessed to have been given the option of cryoablation and to have the most caring, compassionate, and brilliant surgeon. I will be forever grateful to him. His passion for helping breast cancer patients is contagious. It has now become my ministry to advocate for cryoablation, and the many women who can benefit from this procedure. I spend countless hours on Facebook getting the word out about cryoablation and supporting other women with breast cancer. I have the privilege to provide peer support and advocacy for some of my doctor’s patients who come from all over the world. I also help women to navigate insurance coverage for their procedure. Despite the procedure being performed successfully for the past 12 years, some still consider it experimental.

Unfortunately, doctors are unable to accept insurance for cryoablation because a reimbursement value has yet to be established for the cryoablation billing code (0581T). Furthermore, the billing code only covers one freezing/cryoablation and many times more than one is required for larger cancers, if the insurance covers it at all. In my case, I had two tumors requiring two cryoablations. I self-billed Medicare after the procedure using their Patient’s Request for Medical Payment form. I filed the form and included the receipt for services and procedure notes. I was glad I was reimbursed 80% of the cost of one tumor which ended up being about 50% of my total cost.

For private insurance, people can use their out-of-network patient request-for-payment form. File that form, the receipt for services and the procedure notes. If the claim is denied, file an appeal. If needed contact the insurance company’s customer service and ask who has jurisdiction over the insurance company. Then file an appeal with that jurisdiction. They can override the insurance company and force them to pay. If Medicare approves this procedure, then private insurance should as well. I’ve had success doing that in the past. A third-party biller (a professional biller who bills the insurance on your behalf) is also an option. We need to learn how to work the system until insurance companies cover cryoablation for breast cancer just as they do for other cancers.

It is amazing to see how a simple, minimally invasive, in-office procedure can be an option over traditional surgery for some breast cancer patients. Avoiding the loss of a breast and preserving the cosmetic appearance would save a lot of grief and trauma for many women. Of course, cryoablation is not an option for everyone, but it should be available and be covered.

It’s my hope and prayer cryoablation for breast cancer will soon become part of the standard of care, be covered by all insurance and not be limited to covering only one freezing.

Submitted 10/10/2021

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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