You’re diligent about breast health, including self-checks and getting mammograms. You know that you should call your doctor if you feel a lump.
But did you know there’s a serious type of breast cancer that may not present with a lump?
It’s called inflammatory breast cancer, and while it’s quite rare — inflammatory cases make up 1% to 5% of all breast cancer cases, according to the American Cancer Society — it’s also extremely aggressive.
Here’s everything you need to know about inflammatory breast cancer.
Symptoms of inflammatory breast cancer
Aside from not always involving a lump, inflammatory breast cancer presents differently in other ways. The most noticeable is the way it changes the outward appearance of the breast.
The breast may feel and look swollen or feel warm to touch, and the shape of the breast might change. A patch of the skin could become pink or tawny in color, or even dimple or feel thicker, like the texture of an orange peel.
Symptoms can also start mildly, like a small red spot on the breast that looks like a bug bite but keeps growing week after week, explains Dr. Janice Kim, lead breast radiation oncologist at UW Medical Center – Montlake and Seattle Cancer Care Alliance.
No matter how big or small the affected area is, however, it will look like the skin on the breast is slightly inflamed — like an infection.
In fact, many people who visit the doctor are initially told they have an infection and later get diagnosed with inflammatory breast cancer, says Dr. Li-Ming Christine Fang, also a radiation oncologist, who works with Kim.
“Very commonly women who go in are diagnosed with mastitis and given a course of antibiotics, but they don’t get better after taking the antibiotics so then get a mammogram and biopsy,” she says.
How inflammatory breast cancer is different
Inflammatory breast cancer is an oddball among cancers because it tends to affect younger women — even women in their 40s or younger who have no reason to suspect cancer. Fang and Kim see patients who first went to the doctor because they thought their breast issues were due to breastfeeding complications or some mild injury to the breast.
It also gets worse much more quickly than most other cancers — sometimes within a matter of weeks or months.
“Even if you had a mammogram and it was normal, know this is something that can rapidly progress. It’s also possible it was there but too small to detect with the mammogram,” Fang explains.
Because of this, many people who come in with symptoms are already at a more advanced stage of disease. According to breast cancer staging, anyone who is diagnosed with inflammatory breast cancer is already in at least stage III, the second-most advanced stage, since the cancer has spread to the skin.
“A big proportion of patients already have lymph node involvement, and up to a third of them already have cancer that has metastasized to distant parts of the body,” Fang says.
It’s also a difficult cancer to treat and is more likely to come back after treatment. Because of this, it often requires more aggressive and comprehensive treatment than other cancers.
What causes inflammatory breast cancer?
Unfortunately, doctors currently don’t know what makes inflammatory breast cancer develop, both Fang and Kim say.
Women who are overweight or obese are at greater risk, and Black women face disproportionate rates of inflammatory breast cancer compared to white women. Younger women are more at risk and, while men can get inflammatory breast cancer, too, it mostly affects women. There isn’t enough research to prove if it’s a hereditary cancer, Kim says.
Sometimes what looks like inflammatory breast cancer is actually cancer that has been growing and spreading for a long time and has simply become so advanced that it starts to create symptoms on the skin.
The distinction between true inflammatory breast cancer that forms and progresses rapidly, and so-called neglected cancer or secondary inflammatory breast cancer, which is simply more advanced but slower-growing, is important, Fang says.
That’s largely because each type may be treated differently. With inflammatory breast cancer, time is of the essence.
How doctors treat inflammatory breast cancer
Due to the aggressive nature of the disease, its rapid spread and the possibility it will return, treatment usually involves a multi-modality approach with chemotherapy, surgery and radiation.
The treatment plan varies depending on the patient and the specific features of the breast cancer, and someone’s care team will work with them to determine what is best for them and their particular cancer.
“We tailor each person’s treatment, what is most appropriate for them in terms of both surgery and radiation as well. With inflammatory breast cancer, a team approach is particularly critical,” Fang explains.
Treatment is a collaborative endeavor between medical, surgical and radiation oncologists. Diagnostic radiologists and pathologists work together with the treatment team to ensure an accurate picture of the extent of disease and the type of breast cancer a patient has. Other specialists on the care team include genetic counselors, oncofertility specialists and plastic surgeons, Kim says. The more collaborative the team is, the more likely they will create a successful treatment plan for the patient.
Depending on how the cancer is affecting someone’s body, there are different types of chemotherapy doctors may prescribe, says Dr. Lauren DeStefano, a breast surgeon at UW Medicine.
One type, called neoadjuvant chemotherapy, is designed to shrink the tumor or cancerous area on the breast prior to surgery. Other types of chemo may be given before surgery, too, if needed.
Sometimes, doctors also prescribe additional chemo after surgery, DeStefano says.
Most inflammatory breast cancer patients will need surgery, and in most cases that means a mastectomy, DeStefano says. During the procedure, the surgeon will remove the breast, skin and nipple as well as the lymph nodes.
“Since this type of cancer involves the skin of the breast, we unfortunately cannot perform newer mastectomy techniques like the nipple-sparing mastectomy where patients are able to keep their nipple-areolar complex while still removing their entire breast,” DeStefano explains.
This may seem like an aggressive treatment, and it is; since the cancer is so aggressive and fast-spreading, however, Fang, Kim and DeStefano stress that being aggressive with treatment is important.
The third component of treatment, radiotherapy, is about cleaning up any residual cancer cells that survived chemotherapy and surgery, Kim says. Radiation therapy does this by breaking the cancer’s DNA strands.
The problem, says Kim, is that inflammatory breast cancer recurrence is likely to happen even after treatment.
To try to prevent this from happening, Kim and her colleagues are currently involved in a research study looking at whether a drug can prevent the damaged cancer cells from repairing themselves. The drug they’re testing is a type of PARP inhibitor, or poly ADP ribose polymerase inhibitor.
A PARP is a type of repair protein that fixes damage to DNA strands; the idea of the study is to destroy cancerous PARP cells and prevent them from repairing DNA damage caused by radiation therapy, thus hopefully delivering a more powerful punch to the cancer cells and preventing the cancer from coming back.
“We’re hoping to get better control of the cancer cells and eradicate tumor cells from the chest and lymph nodes and other places they like to hide,” Kim explains.
The researchers will soon be recruiting patients with inflammatory breast cancer for the study. If you’re interested, you can learn more and find out how to enroll.
The bottom line
Though survival rates for inflammatory breast cancer are lower than other types of breast cancer, there is hope. Research and advanced therapies are helping treat the cancer more successfully and helping patients live longer.
For cases where the cancer hasn’t spread too far, five-year survival rates are as high as 52%, according to the American Cancer Society.
“More modern improvement in survival rates has been largely due to improvement in chemotherapies. If you look back a few decades, it was very grim with survival rates of not more than 10%. That’s increased substantially, but it is still the worst performer of all non-metastatic breast cancers,” Fang says.
One of the most important parts of treatment is that someone gets started on it as soon as possible, Kim says. The sooner someone starts getting treated after a diagnosis, the better their outcome will likely be.
And the key to getting a diagnosis, of course, is going to your doctor if you have any concerns.
“The two most important things are staying up to date with annual mammograms and knowing your own breasts. Knowing when something is new or different for yourself can prompt your doctor to take the necessary steps to find out what is causing the change,” DeStefano says.