Rare Breast Cancer Program
Overview
Out of every 100 people with breast cancer, 5 cases are a rare subtype. Because there are so few cases, only some doctors have experience in diagnosing and treating them. It’s important to choose a care team with special training in rare breast cancers.
MSK’s Rare Breast Cancer Program has that experience. Each year, we evaluate and treat about 200 people with rare breast cancer in early or more advanced stages.
We have created a whole care team of experts to make the best plan for you. At your MSK appointment, we’ll also evaluate whether we have a research study that’s right for you. We’ll guide you if you want to join our research, also known as a clinical trial.
Some types of rare breast cancers may be caused by inherited genes, such as the BRCA1 and BRCA2 genes. Perhaps members of your family related to you by blood were diagnosed with breast cancer. If so, you and your family may consider getting genetic testing at MSK.
For some people, genetic testing is the best way to understand everything about a breast tumor. MSK can help.
Program details
MSK created this program to develop better treatments for rare breast cancers. We’ll get samples from your tumor with a biopsy or during surgery. Then we’ll run tests on the tumor. The results will help guide your care.
Each rare breast cancer type is different. But most treatment guidelines often are only based on the common types of breast cancers. Testing will let us match treatment to the kind of cancer you have.
The Rare Breast Cancer Program will make sure you get the best treatment. We’re here for you. And for our future patients, our research is improving what we know about rare breast cancer types.
Our promise is to share everything we know, and to research what we do not know.
Rare breast cancers are not common. They happen less often than more common types, such as ductal carcinoma and lobular carcinoma.
- Metaplastic breast cancer
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Metaplastic (meh-tuh-PLAS-tik) breast cancer is a rare type of invasive breast cancer. Invasive means it spread from where it started in the breast to nearby healthy tissue.
Invasive cancers can be more aggressive and grow fast.
Metaplastic breast cancers have some breast cells, as well as cells that do not come from the breast. It’s a mix of 2 or more types of breast cancer cells, usually carcinoma and sarcoma.
Metaplastic breast cancers most often are triple-negative. That means they do not have the estrogen, progesterone, or HER2 receptors that are common in other breast cancers.
- Micropapillary breast cancer (invasive micropapillary carcinoma)
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Micropapillary breast cancer is also called invasive micropapillary carcinoma. It’s invasive breast cancer.
Invasive means it spread from where it started in the breast to nearby healthy tissue. Invasive cancers can be more aggressive and grow fast.
- Neuroendocrine breast cancer
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Neuroendocrine (NOOR-oh-EN-doh-krin) tumors in the breast can have a few forms.
The tumor can be an invasive breast cancer that acts more like a standard breast cancer.
It can be neuroendocrine carcinoma of the breast, a more aggressive cancer. To make a diagnosis, we look for neuroendocrine markers.
- Adenoid cystic breast cancer (adenoid cystic carcinoma)
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Adenoid cystic breast cancer is also called adenoid cystic carcinoma. It’s made up of abnormal (not normal) epithelial cells that invade the milk ducts. Epithelial cells are cells that line an organ.
Adenoid cystic tumors most often are triple-negative. That means they do not have the estrogen, progesterone, or HER2 receptors that are common in other breast cancers.
Adenoid cystic carcinomas generally grow slowly and respond well to treatment. However, there is a type that tends to be more aggressive, called the solid basaloid variant.
- Tubular breast cancer
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Tubular breast cancer is made up of tube-shaped cells. It starts in the milk ducts. Most often, it does not spread past the ducts and surrounding tissue. This cancer grows slowly. It has a better prognosis (treatment result) than other rare breast cancers.
- Secretory breast cancer
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Secretory breast cancer most often affects children and young adults, but it can happen at any age. The first symptom most often is a firm, painless lump. Another possible symptom is discharge from a nipple.
This cancer grows slowly. It responds well to treatment, even when it has spread to lymph nodes.
You’re a person with a life beyond cancer, and we want to help you get back to it. That’s why we have programs and services to support you and your loved ones, including:
- Genetic testing and counseling to help you find if you have a mutation. Our experts can tell you how this affects your treatment, and what it means for your family members.
- Our food and nutrition team can help you keep a healthy diet during breast cancer treatment. They can help you eat in a way that lowers your risk for the disease. They will help you understand and cope with nutrition challenges related to cancer treatment.
- MSK’s Healthy Living program offers personal support to help you during every step of treatment and recovery. We will create a personal lifestyle plan based on your needs and concerns.
- We have a team of experts who manage the symptoms and side effects of cancer treatment. They offer ways to help manage nausea during chemotherapy.
- MSK has a program for treating lymphedema, a type of swelling after breast cancer treatment.
Sexual heath and fertility
Cancer affects your sex life in both physical and emotional ways. Our Female Sexual Medicine & Women’s Health Program can help with physical symptoms and emotional challenges that may affect your sex life. We can talk with you about physical changes that affect intimacy.
MSK has experts with special training in female sexual health and fertility. Perhaps you’re trying to have a child or think you may want to start a family someday. We can help you understand your options before and after treatment for having children.
Body image
Breast cancer and its treatment can affect your feelings about your body. Our surgery team has experts in breast surgery and all types of breast reconstruction. The first step is deciding what type of breast reconstruction is right for you. We also offer emotional support to help with anxiety and stress related to breast surgery.
Pain management
Pain management is an important part of cancer care. MSK was the first cancer center in the country to have a service just for treating pain in people with cancer. Our pain experts will help relieve or manage pain after surgery. They can help while you’re still in the hospital, and after you’re home.
Integrative medicine
Our Integrative Medicine Service (also called complementary therapies) offers acupuncture, meditation, massage therapy, yoga, and exercise.
You may want support to cope with side effects of treatment. These may include pain, fatigue (feeling very tired), nerve problems, nausea, insomnia, and stress.
Without using prescription drugs, integrative therapies can help improve and control side effects of cancer treatment.
Integrative medicine services are available in New York City, New Jersey, Westchester, and on Long Island. We also offer virtual classes and workshops.
Rehabilitation and staying active
Cancer treatment can change how well your body moves.
Our Rehabilitation Medicine team guides you in recovering from the effects of treatment. Training with our physical, occupational, and exercise therapists can help bring your strength back. They can help with your breathing, speech problems, muscle strength, lymphedema (arm swelling), and many other issues after surgery.
We can work with you in our gyms at convenient locations closer to home. We have locations in Manhattan, New Jersey, Westchester County, and on Long Island. Your care team also can give you exercise programs to do at home.
Counseling, support services, and resources
We have many services to support you during breast cancer treatment. Our experts offer counseling and support to help you manage anxiety. We offer support groups and programs if you want to talk with other people going through a similar experience.
Social workers can offer information about how to talk about your diagnosis with family members, work colleagues, and friends. Our social workers can also help address your financial concerns.
Many people with cancer prefer to get treatment closer to home. MSK provides excellent cancer care on Long Island and in locations in Westchester County, New Jersey, and New York City. You can meet with your surgeon and have chemotherapy, radiation therapy, and genetic testing.
Common questions
What is genetic testing for rare breast cancer?
Genetic testing is a type of medical test. It looks for changes (mutations or variants) in your genes. Testing can tell us which gene has a mutation that can cause a rare breast cancer.
Before testing, we’ll give you information about genetic testing. We’ll also ask for your written permission to do genetic testing.
Genetic testing involves checking the genes in a sample of blood or saliva (spit). We collect blood at an MSK location near you. We get a saliva sample through a saliva kit mailed to your home. The sample is sent to a testing lab. The genetic test result is available in a few weeks.
Can rehabilitation services help me recover?
Cancer treatment can change how well your body moves.
Our Rehabilitation Medicine team guides you in recovering from the effects of treatment. Training with our physical, occupational, and exercise therapists can help bring your strength back.
They can help with your breathing, speech problems, muscle strength, lymphedema (arm swelling), and many other issues after surgery.
We can work with you in our gyms at convenient locations closer to home. We have locations in Manhattan, New Jersey, Westchester County, and on Long Island. Your care team also can give you exercise programs to do at home.
Does MSK offer counseling and other support services?
You and your loved ones face emotional and social challenges after learning you have cancer.
We offer counseling and support to help you manage anxiety, depression, anger, or loneliness. There are individual and group counseling sessions, both in person and through telemedicine visits. Counseling is open to you and your family, separately or together.
We also run support groups and programs if you want to talk with other people going through a similar experience. Our social workers can offer information about how to talk about your diagnosis with family members, work colleagues, and friends.
