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Amy Marshall: Seeking Care for a Rare Condition after Breast Cancer

October 22, 2024

Having been diagnosed seven years ago with an uncommon disorder known as trigeminal neuralgia, a condition that causes intense pain on one side of the face, Amy Marshall is no stranger to rare diseases, but when she learned that she had radiation-induced morphia following surgery for breast cancer, she was at a loss. Radiation-induced morphea (RIM) is a rare but serious skin complication that can occur after radiation therapy, especially for breast cancer, and is often misdiagnosed.

Two years ago, Amy, who lives in Kentucky, delayed scheduling her annual mammogram because she was recovering from spinal cord stimulator surgery to help treat pain from her trigeminal neuralgia diagnosis. When a close friend was diagnosed with breast cancer, she took it as a sign and immediately scheduled her mammogram. Following further testing, she was diagnosed with invasive ductal carcinoma in her right breast. While in Kentucky, she had a lumpectomy and sentinel lymph node biopsy with oncoplastic reconstruction.

It was also recommended that Amy have radiation therapy following her surgery to help prevent a recurrence. Four months after her last radiation treatment, Amy’s right breast became red, swollen, and very uncomfortable. She was sent to an infectious disease doctor and a rheumatologist to rule out an autoimmune disease, but all the results came back normal. From there she received steroid shots, ultrasound-guided botulinum injections, nerve blocks, physical therapy, lymphatic massages, and scar tissue massage, but nothing provided her with relief from the pain she was experiencing. The only thing that helped were pectoral nerve blocks (PECS), which is a technique that uses local anesthetics to numb the nerves in the chest wall. Eventually, her surgeon determined that it may be a rare condition known as radiation-induced morphia, but her care team had only seen one other case before and did not know the best way to treat it.

When her only option was the implanted pain pump, someone in Amy’s support group suggested she seek a second opinion at Smilow Cancer Hospital and Yale Cancer Center. After a phone call with a patient intake coordinator at Smilow, the next thing Amy knew she was driving from Kentucky to meet with members of the Center for Breast Cancer at Smilow Cancer Hospital.

“That first meeting was so well organized and reassuring,” said Amy. “I got to meet with the entire team that would be caring for me and I scheduled my surgery right then. I finally felt like I was in competent hands, and even though I knew there were no guarantees, I was willing to try anything to relieve my pain. Between my trigeminal neuralgia and this, I could not take much more.”

Gregory Zanieski, MD, FACS, Assistant Professor of Surgery (Oncology), performed her surgery at Smilow to remove the RIM, which had caused the overlying inflammation and scarring. RIM causes excessive collagen deposition in the skin, which leads to thickening and can cause pain, skin changes, and edema (swelling caused by too much fluid trapped in the body's tissues).

“During Amy’s surgery we found a lot of scar tissue on the back and side of the breast and chest wall. This scar tissue had adhered to the muscles of the chest wall, and the muscles themselves were also scarred. We were able to successfully remove the breast along with the notable scar tissue and muscle that were affected,” said Dr. Zanieski.

Next, Siba Haykal, MD, PhD, FRCS, FACS, Section Chief of Reconstructive Oncology in the Division of Plastic and Reconstructive Surgery at Yale, performed a flat aesthetic closure, a surgical procedure that removes any excess skin following a mastectomy to create a flat and even closure.

"When I met Amy, it was clear that she had so much pain in that breast and we needed to help her. A mastectomy was recommended to relieve her symptoms and we discussed multiple options for reconstruction. She elected to undergo an aesthetic flat closure and has healed beautifully. Most importantly, her pain has improved, which has positively impacted her quality of life,” said Dr. Haykal.

Now back in Kentucky, Amy is still in recovery and is working on increasing range of motion and lessening some tightness, but her pain is becoming less and less each day. She currently receives occupational therapy twice a week and has physical therapy as well. She also is dealing with ongoing issues with fluid buildup. The UofL Health – Brown Cancer Center has taken over Amy’s care where she will continue to be followed.

“The team at Yale did an amazing job and I am very impressed with the outcome and how it looks. The results are remarkable based on what they had to work with, and I did not expect it to look this good. Everything has healed really well, which was a miracle,” said Amy.

The night before Amy’s surgery, she found herself at a restaurant in New Haven and was feeling very scared, anxious, and alone. She noticed a group of priests sitting at a nearby table and decided to approach them. She shared her story and how she came to be in New Haven, and asked that they pray for her. “They held my hands and blessed me and my surgeons and assured me that I was in the right place and that I was here for a reason. This is a very rare condition and there just wasn’t the expertise where I live to deal with this. I am so grateful for the team at Yale, as they are the reason I am living with less pain now. My advice is to find a team that believes in you and wants to help you. I am forever thankful that Yale took a chance on me, because they didn’t have to.”