Michelle Villagomez says MSK’s Rare Breast Cancer team helped her through her treatment for metaplastic breast cancer. “The nurses and doctors are all wonderful at letting you know they’ve seen it before.”
It all happened so fast, says Michelle Villagomez. During a mammogram in February 2022 to check out a grape-sized lump in her right breast, the medical staff told Michelle to stay for an ultrasound. Then the radiologist pulled her aside and urged her to see an oncologist.
“I walked to the parking lot and sat in my car to process that this was something serious,” Michelle recalls. She called her friend whose brother was a doctor in Long Island. He arranged a biopsy right away.
Then came the alarming result: She had metaplastic breast cancer, a rare, invasive form of the disease. The information about it online was frightening to Michelle, a 41-year-old married mother of a 4-year-old. She held out hope that the diagnosis was wrong.
“There are some situations when you want to be special,” she says, “but when it comes to something like breast cancer, you want to have the run-of-the-mill type that doctors see all the time.”
To have the best prognosis (outcome) for metaplastic breast cancer, she wanted a second opinion from doctors who are familiar with rare types of breast cancer. Friends and co-workers recommended she call Memorial Sloan Kettering Cancer Center (MSK).
Michelle met with MSK breast surgeon Giacomo Montagna, MD, MPH, who immediately eased her anxiety. “He has the best bedside manner, very kind and competent, which gave me confidence,” she says.
Surgery for Rare Breast Cancers, Like Metaplastic
Dr. Montagna is Co-Director of MSK’s Rare Breast Cancer Program, along with medical oncologist and breast cancer specialist Nour Abuhadra, MD. Because there are so few cases, only a small number of doctors have experience in diagnosing and treating rare cancers like Michelle’s.
“Treatment guidelines are based on more common breast cancers, but we know each rare type is distinct,” Dr. Montagna says. “For rare tumors like metaplastic breast cancer, we have the expertise to deliver the best treatment. MSK patients often have access to experimental treatments before other patients.”
Looking at the biopsy, the doctors at MSK confirmed that Michelle had metaplastic breast cancer, also called metaplastic carcinoma. Dr. Montagna collaborated with breast cancer oncologist Pedram Razavi, MD, PhD, and reconstructive surgeon Jonas Nelson, MD, MPH, to develop the best treatment plan for Michelle.
They proposed chemotherapy and immunotherapy to shrink the tumor, to be followed by surgery — an approach used for so-called triple-negative tumors. These cancers can be harder to treat. Although Michelle’s tumor had very small levels of weak estrogen receptor (ER) expression, because it was metaplastic, the doctors treated it as if it were triple-negative.
“The idea is to be as aggressive as we can in the beginning to eradicate cancer cells that have already spread,” Dr. Razavi says. He wanted to start the chemotherapy right away. Dr. Razavi is also an expert in cancer genomics, which analyzes the genetic profile of a tumor to determine the best treatment.
However, Michelle’s tumor was growing even faster than expected. If it spread into the skin or chest wall, it could become inoperable. Drs. Razavi and Montagna agreed immediate surgery was needed. They explained to Michelle the various surgical options, including not only removing the tumor but also breast reconstruction to achieve the best cosmetic result.
Nipple-Sparing Mastectomy After Rare Breast Cancer Diagnosis
Michelle opted to have a nipple-sparing mastectomy, a procedure that leaves the nipple and areola intact, along with the breast skin. In late March, Drs. Montagna and Nelson did the procedure in a single operation at the Josie Robertson Surgery Center. Dr. Montagna removed the entire breast while retaining the nipple. He also removed the first few lymph nodes in the armpit to test for the presence of cancer cells.
Through the same skin incision, Dr. Nelson inserted a temporary implant called a tissue expander. This hollow implant is gradually inflated over time, stretching the skin to make room for a more permanent breast implant about six months later.
Michelle was discharged the day after surgery and recovered well. “I had never had surgery before, so the first few days were rough. But after the first week, it was manageable,” she says.
“Dr. Montagna really flipped the switch for me psychologically,” Michelle explains. “After the surgery, he said: ‘You do not have cancer right now. The tumor is out, and everything else we’re doing is to prevent recurrence.’ ”
Using Chemotherapy and Immunotherapy To Treat Rare Breast Cancers
Dr. Razavi oversaw the next phase of treatment, starting Michelle on a regimen of four breast cancer chemotherapy drugs and an immunotherapy drug. Because this cancer was aggressive, the treatment had to be powerful.
“The benefit of our Rare Breast Cancer Program is that you need to deviate from the standard of care,” Dr. Razavi says. “I have several patients now with breast cancers that are very rare, including multiple patients with metaplastic cancer.”
He points out that other institutions might have treated Michelle’s cancer as if it were ER-positive, which would have resulted in undertreatment.
“This is one of the nuances of dealing with these rare tumors,” he says. “Based on our cumulative experience here at MSK, we have the expertise to consider the right treatment approach for not just rare types of breast cancer but subtypes within them. Sometimes it’s escalating treatment, but often it’s de-escalation — they may have a subtype that doesn’t need such strong therapy. These patients need a program with doctors subspecialized in pathology, clinical treatment, and genomic testing for such rare breast cancer subtypes.”
Supportive Care for All People With Breast Cancer
“The MSK team really helped me go through this stressful time,” Michelle says. “Chemotherapy was a shock to my system. But I knew at any time when I didn’t feel well, I could call and someone would help me. The nurses and doctors are all wonderful at letting you know they’ve seen it before, and there’s no reason I had to feel bad — they can adjust medications to make it more tolerable.”
Michelle also was referred to an MSK social worker who counseled her on how to explain her condition to her young son. “I was very stressed about what to say — how would he react when my hair started falling out? But they helped guide me in demystifying the cancer experience and making things go smoothly. He was not thrilled at first when I was bald, but he got used to it and would even joke about it.”
After Michelle finished her chemotherapy and immunotherapy in September 2022, Dr. Nelson completed the breast reconstruction, which also went well.
Dr. Razavi has monitored Michelle closely for any signs of cancer recurrence by doing regular “liquid biopsies.” They involve analyzing blood samples taken from Michelle every three months with a very sensitive liquid biopsy test to look for cancer cells circulating throughout the body.
“Given the high-risk nature of metaplastic breast cancer, I wanted to do this extra follow-up test to keep a close watch and make sure the cancer wasn’t starting to come back,” Dr. Razavi says. “I’m grateful MSK is able to offer this test for specific subsets of patients with such high-risk breast cancers. Thankfully, Michelle has had negative results every time so far, but we plan to keep checking.”
“I joked with Dr. Razavi that I feel like I got fired from my part-time job, which was going to MSK all the time for infusions and treatments, and now mostly I’m done with it,” Michelle says.
Now 43, Michelle is working at an animal welfare nonprofit and enjoying her family. “We focus on creating happy memories for our son — whether it’s a hike or just riding the trains around one day when that’s what he wanted. We’ve also started traveling again.”
Other people facing rare breast cancer have reached out to Michelle. After connecting with her, one woman whose mother also had metaplastic breast cancer went to MSK and was treated by Drs. Razavi and Abuhadra.
“I was able to give tips based on my own experience, such as handling some of the treatment side effects,” Michelle says. “It was nice to see that the program was helping other people,”
Michelle also makes sure everyone she knows is aware of array of the vast support services that are available at MSK – like acupuncture, physical therapy, and counseling.
“You should be your best advocate,” Michelle says. “Don’t be afraid to ask questions or get a second opinion. I did and found out MSK is a wonderful place.”
This story was first published in August 2022 and has been updated.