Paget disease is a rare form of breast cancer, making up 1-4% of all breast cancer cases, according to the National Cancer Institute. The disease first appears on the nipple and often extends to the areola. In many patients, Paget disease may also be associated with a tumor or tumors in the affected breast.
Symptoms of Paget disease of the breast include:
- Eczema-like skin changes of the nipple and/or areola, including skin crusting, thickening and flakiness
- An ulcer on the nipple and/or areola
- Tingling or burning of the nipple and/or areola
- A flattened or inverted nipple
- Yellow or bloody nipple discharge
- A lump or lumps in the same breast as the affected nipple.
Many of these symptoms can be confused with skin conditions like eczema or dermatitis. As a result, many people show signs of Paget disease for several months before it is diagnosed. Partly due to these later-than-normal diagnoses, the survival rate for Paget disease is slightly lower than for breast cancer overall. However, if the disease is caught early, the chances for a cure are high.
If a doctor suspects a patient has Paget disease of the breast, the breast should be imaged. This can be done by a mammogram or possibly an ultrasound. If anything suspicious shows up in the image, such as a lump or calcified tissue, a small sample of the tissue is retrieved. This is often done during the imaging exam. From there, a pathologist will study the tissue sample in order to make a diagnosis.
If the images and biopsy comes back clear, though, the patient may still have cancer. At this point, the nipple and/or areola must be biopsied directly.
Treatment for Paget disease of the breast is similar to treatment for other breast cancers. The main difference occurs during surgery. When a patient undergoes surgery for Paget disease, whether a lumpectomy or mastectomy, the procedure requires the removal of the nipple and areola.
Why choose MD Anderson for Paget disease care?
Because Paget disease is a rare breast cancer, finding a team with the expertise to properly diagnose and treat this cancer is essential. The Nellie B. Connally Breast Center at MD Anderson is one of the largest and most active breast centers in the world, giving our team experience in treating Paget that few can rival.
Paget disease patients will also benefit from our multidisciplinary approach to care. All MD Anderson breast cancer patients have a breast surgeon, breast medical oncologist and breast radiation oncologist assigned to their case. These experts work together to develop a coordinated, personalized treatment plan for everyone they see.
This care is also available beyond MD Anderson’s campus in the Texas Medical Center. Through our five Houston-area locations, patients throughout the region can get the same top-ranked care and personalized attention close to home.
When the small spot first appeared on her nipple, Karrie Morgan didn’t think much of it. She was shocked nearly a year later when she learned it was a symptom of Paget disease, a rare type of breast cancer that affects 4% of patients.
Over the course of that year, the spot had grown. When Karrie began covering it with a bandage, she started to suspect that something wasn’t right. Then, during a routine exam, her gynecologist recommended she see a dermatologist. Her dermatologist biopsied the spot and delivered Karrie the results on April 18, 2018 – the day before her 38th birthday.
“I thought that when it came to breast cancer, you were looking for a lump,” Karrie says. “Now I know that women should look for any change in their breasts as a possible breast cancer symptom.”
Coming to MD Anderson for Paget disease treatment
Right away, Karrie decided to seek treatment at MD Anderson. It was 90 minutes away from her home outside of Beaumont, Texas, and she knew of the cancer center’s prestigious reputation. She, her husband, mother and sister traveled for two days of appointments on May 8 and 9 -- just a few weeks after her diagnosis. The first day was dedicated to scans and tests. Karrie was impressed with how quickly she was able to complete all of them.
The next day she met with her medical oncologist, David Ramirez, M.D., and her surgeon, Sarah M. DeSynder, M.D. DeSnyder went over the test results with Karrie: she did, in fact, have Paget’s disease, and the cancer had spread to her lymph nodes.
“Is my daughter going to be OK?” Karrie’s mom asked.
DeSnyder assured her she was in good hands.
“That was when we knew I was going to be fine,” Karrie says.
Karrie's Paget disease treatment
Right away, she started chemotherapy. She had six cycles of neoadjuvant therapy administered every three weeks for about five months, as well as pertuzumab and trastuzumab infusions that she will take for one year. She took each Wednesday off from her job as an operations manager so she could have the medication administered at MD Anderson. Then, she headed back to work on Thursdays. On Friday afternoons, she usually started to feel the side effects – fatigue, nausea and hair loss. She recovered over the weekends, and by Monday, she was back at work and feeling better.
On Oct. 10, a month after completing chemotherapy, Karrie underwent a mastectomy of her left breast. She was nervous, but right away, her nurse and anesthesiologist Jeffrey Cerny, M.D., helped her feel at ease. Still, she nervously asked DeSnyder, “Are you sure we really need to do this?”
DeSnyder nodded and assured Karrie she’d be fine.
After her successful surgery, Karrie spent one night in the hospital before returning home. Initially, she was a little sore and her range of motion was limited, but little by little she started to heal.
Karrie’s husband, Dustin, helped her cope with the changes in her appearance.
“We’ve been married for 12 years, and every day he tells me I’m beautiful,” she says. “That didn’t change during cancer treatment.”
Karrie adds that her son, Dillon, often echoed his father’s words.
Building a bond during breast cancer treatment
In early November, Karrie started six weeks of radiation therapy. Every morning, she travels to the Texas Medical Center with a different family member or friend.
“Visiting helps pass the time,” she says.
Another thing that helps pass the time, Karrie says, is visiting with the other patients in the radiation waiting room. She even started collecting gift cards over social media to share with the other women.
“You never know what a difference it can make to someone,” she says.
More than 30 of her friends and family members contributed to the effort, which she called “#giftcardsformygirls.”
“Everyone in my life has done something to help me in their own way,” she says. “I’m very blessed.”
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