Sharon Ann Merritt                                   

  Breast Cancer Advocate

 

My Breast Cancer story

On April 2018, I was diagnosed with HER2+ breast cancer, after having a mammogram because of a nipple discharge. HER2+ (positive) breast cancer is when breast cancer cells have excessive amounts of a protein receptor called HER2 (human epidermal growth factor receptor 2). Normally, this protein helps breast cells grow, divide, and repair themselves. But sometimes, something goes wrong in the gene that controls the HER2 protein and the breast cells make too many of these receptors. This causes your breast cells to grow and divide uncontrollably, causing breast cancer. About 1 of 5 breast cancers are HER2+.

I was rushed through the traditional protocol, MRI and surgeon appointment. The surgeon’s recommendation was immediate lumpectomy and radiation. When I informed the surgeon I wanted to think about it, he informed me I had no time to wait, or I would also need chemo. Fortunately, two friends stopped me from doing the traditional and sent me off on a holistic journey. One of them was an oncology nurse who had healed her breast cancer herself. She gave me books to read and supplements to take. From there I researched everything I could and threw it at the cancer. I also did and continue to do extensive psychotherapy including EMDR to deal with past trauma as there is an emotional link to breast cancer.

Fast forward to July 2020, I heard about a blood biopsy done in Greece that could predict the supplements that would kill your specific cancer. I found a group on Facebook and a lady that recommended a doctor in Irvine, CA. I made an appointment and had the test done. At my follow up visit in August with Dr. Leigh Erin Connealy, she suggested I research cryoablation. I joined a Facebook group where Jennifer Pinto told me about a surgeon in Glendale, CA, Dr. Dennis Holmes. I sent him all my records and he accepted me as a patient “off protocol” (which means that I’m not a part of a study and need to pay up front). His assistant set up a consult. At the consultation he said he suspected my nipple and areolar skin changes were Paget’s disease of the breast and recommended a biopsy. I had seen several doctors for the nipple, and he was the only one who recognized the Paget’s. The others told me they were pretty sure it wasn’t since it’s supposedly rare. I was already sure after lots of research it was Paget’s, so I didn’t need a biopsy. I just asked him to remove it and he agreed.

On Sept 30, 2020, I arrived at Dr. Holmes’s office for cryoablation and to have the Paget’s nipple removed. Being as meticulous as he is, he first did his own ultrasound and found a second tumor that was missed by 5 radiologists on the previous scans. He proceeded to numb the breast and do a biopsy of the newly discovered tumor. He made a very small incision and 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 killing them. He then removed the nipple and placed it in a container to be sent to pathology. Once the stitching of the wound was done, Dr. Holmes proceeded to freeze the second tumor. The whole procedure took about two and a half hours due to two tumors and the minor surgery. All done in office. It was amazing. A simple tiny incision vs. 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 was fortunate to not have any bruising, which is not typical. I left the office with a dressing on my incision from the nipple removal and a Band-Aid on the incision 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 Dr. Holmes’s recommendation, I did 6-months of Herceptin infusions to kill any HER2+ breast cancer cells remaining in my body.

Three months later Dr. Holmes did a follow up ultrasound that showed no evidence of disease. At six months I had an MRI, ultrasound, and biopsy. MRI and ultrasound were clear, and the biopsy came back benign, no malignancy. And now a year later I can’t feel the mass.

I was recently privileged to observe Dr. Holmes perform a cryoablation procedure. It is amazing to see how a simple in office procedure can replace lumpectomy or mastectomy for some breast cancer patients. Losing a women’s breast is a very traumatic experience. Avoiding the loss of a breast would save a lot of grief for the women who have the option. Of course, for some cryoablation is not an option. But for those who could have the option it should be made available. Not only does it prevent a lot of trauma and pain, but it is also extremely cost-effective. If insurance covered cryoablation they would be paying out a lot less than what they pay for the lumpectomies and mastectomies with reconstruction. I feel so blessed to have been given the option of cryoablation and to have the most caring, compassionate, and brilliant surgeon--Dr. Dennis Holmes. I will be forever grateful to him.

Unfortunately, doctors are not able to accept insurance for cryoablation because a reimbursement value has yet to be established for the 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. That’s if the insurance covers it at all. Most insurance companies are still considering it experimental even though it’s been done successfully for over 12 years. In my case I had two tumors which required two freezings/cryoablations, but Medicare only covered one. However, I was able to self-bill Medicare after the procedure using their Patient’s Request for Medical Payment form. I filled out the form and included my doctor’s receipt for services and procedure notes from the doctor. I was glad to see that at least I was reimbursed 80% of the cost of one tumor which in my case was about 50% of my total cost.

For private insurance I would recommend doing the same as I did for Medicare. All insurance companies have an out-of-network patient request-for-payment form. File that form with the doctor’s receipt for services and the procedure notes. If the claim is denied, file an appeal. If they deny the appeal, then contact the insurance company’s customer service and ask who has jurisdiction over the insurance company. Then file an appeal with that jurisdiction. In that appeal you could say that, if Medicare approves and pays for this procedure, then private insurance should as well. The jurisdiction can override the insurance companies’ denial and force them to pay. I’ve had success doing that in the past with other issues. We need to fight the system until cryoablation becomes standard of care for breast cancer. It’s time that insurance companies covered cryoablation for breast cancer just as they do for other cancers (including prostate cancer). You can also use a third-party biller (a professional biller who bills the insurance on your behalf) to bill the insurance. I know ladies that belong to medical coops get their cryoablation covered and others who have managed to get some insurance coverage.

I also want to say how much I appreciate Dr. Dennis Holmes. His passion for helping breast cancer patients is contagious. My life has been forever changed because of meeting him. I have learned so much from him and want to share my knowledge with other ladies. Together, Dr. Holmes and I raised $30,000 for a clinical trial for Cryoablation of DCIS with the help of Doterra Healing Hands Foundation Matching program. Dr. Holmes is currently recruiting for this trial.

It has now become my ministry to advocate for cryoablation, Dr. Holmes, and the many women who can benefit from this procedure. In the year since I had my cryoablation I have had the privilege of sharing with many other ladies who have now also been spared surgery through cryoablation. I spend countless hours on Facebook getting the word out and supporting the ladies no matter which journey they chose. It’s important that ladies know all their choices and make their own informed decision when facing a breast cancer or DCIS diagnosis. Doctors should present all possible options, make their recommendations, and then respect the ladies right to choose what they are comfortable with, not dictate what they “have” to do. After all, the ladies are the ones that must live with the decision and the outcome, not the doctor. I have been very blessed with a team of doctors that educate me on all my options, let me do my research and then respect my choices even if they disagree. It wasn’t easy to find my doctors, I fired a few doctors along the way. Cancer is stressful enough on its own. It’s important to have supportive doctors whom you respect and who respect you. It’s also extremely important that you do your own research. Don’t be afraid to ask questions. If a doctor doesn’t want to answer your questions, find one that will. Take one day at a time and breathe. You can get through this! 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.