After a breast cancer diagnosis — questions you should ask

By Susannah Nesmith

Special to the Miami Herald

The National Cancer Institute estimates that 246,000 women will be diagnosed with breast cancer this year, along with about 2,300 men. And while nearly 7 percent of all cancer deaths are attributed to breast cancer, hundreds of thousands of men and women have been successfully treated.

The five-year survival rate is 89.7 percent. Doctors believe early detection is important, but once a cancer is discovered, patients need to educate themselves about it.

Below are questions breast cancer specialists say they want their patients to ask them.

1. What kind of breast cancer do I have?

Breast cancer isn’t a single disease. There are different kinds and the different kinds require different treatments.

Newly diagnosed breast cancer patients will be tested to determine if their tumors are responsive to two hormones, progesterone and estrogen, and to the human epidural growth factor 2, or HER2. Scientists have developed targeted treatments for each.

“There is a lot of information that patients didn’t have to know in the past,” explained Dr. Carmen Calfa, a breast oncologist at Sylvester Comprehensive Cancer Center at the University of Miami Health System. “The type of cancer can determine what the best treatment is. The treatments are more personalized than ever before.”

Patients should also find out if they have ductile or lobular cancer. Ductile begins in the milk ducts, which carry breast milk to the nipple. Lobular begins in the lobules, or milk-producing glands of the breast. The lobules are connected to the ducts.

“Ductile cancer is the most common and it can be aggressive,” explained Dr. Thomas Samuel, a breast oncologist at Cleveland Clinic Florida. “Lobular cancer can also be aggressive but the treatment for it is different.”

Certain patients should also undergo genetic testing, particularly if there is a history of breast cancer in the family, because certain gene mutations – BRCA1 and BRCA2 — have been shown to increase the risk of ovarian cancer in women and prostate cancer in men. These gene mutations carried by Rep. Debbie Wasserman-Schultz and actress Angelina Jolie — two well-known women who chose to undergo not just double mastectomies, but also to have their ovaries removed to prevent cancer.

2. What stage cancer do I have?

This is important information to understand now, because on the positive side, so many breast cancer patients are successfully treated and go years cancer-free. On the negative side, breast cancer can recur, even years later.

“We often see a patient who comes to us not when they’re diagnosed, but somewhere down the road, maybe 10 years later,” Samuel said. “It’s important for us to know as much as possible about that diagnosis. The stage of the cancer at the first diagnosis helps us determine how aggressively the cancer needs to be treated and how to handle a recurrence. How big was the tumor? Were the lymph nodes involved and [if so] how many were involved?”

3. What percentage of your practice is dedicated to breast cancer?

While a general surgeon can perform breast surgery, doctors who specialize in breast cancer are more likely to know about the latest research. The same is true for breast oncologists and breast radiologists.

“A general surgeon may be an excellent surgeon, but they may not be on top of the literature,” said Dr. Starr Mautner, a breast surgeon at Baptist Health’s Miami Cancer Center. “You really need to be up to date on the latest treatments. Someone who specializes in breast surgery can dedicate time to going to the conferences and reading the latest studies.”

4. What support services do you have available for me?

While doctors can explain the medical side of breast cancer to you, they understand that there is an emotional side to the diagnosis too.

In Mautner’s practice, she maintains an informal “Bosom Buddies” group of recently recovered patients who can mentor the newly diagnosed patients.

Many cancer doctors also work with dieticians and nutritionists, psychologists and psychiatrists, and genetic counselors.

5. What can I do to improve my chances?

Calfa, at Sylvester, said she explains what the standard treatment options are for a given patient, depending on the type of cancer and the stage. Then she discusses ways to improve the patient’s odds.

“I talk about clinical trials, both at my own institution and at others,” she said. “A lot of patients worry that they’ll be in the placebo group, but in a clinical trial, if you are in the placebo group, you will get the placebo in addition to the standard of care for your cancer.”

Calfa, Samuel and Mautner said they often have patients asking about vitamins, herbal supplements, or special diets.

“In general, we recommend minimizing what they’re taking because the studies haven’t been done to show how those might interact with the treatment,” Calfa said. “There’s never going to be a study where half the patients are getting organic and half are getting McDonald’s. I do advise patients to stay away from preservatives and artificial colors but I think it’s more important for them to just try to eat healthy.”

6. What does this diagnosis mean for my ability to have children?

This is an important question for younger women.

In some cases, they may want to undergo procedures to freeze their eggs before getting treatment. In most cases, doctors will advise patients to avoid getting pregnant while they’re undergoing treatment. But they do not necessarily have to abort a pregnancy because of a breast cancer diagnosis.

Calfa recently treated a woman who was diagnosed shortly after becoming pregnant. “The baby was old enough to require attention and the cancer was advanced enough to require treatment,” she said. “I’m happy to say the baby was born two months ago, perfect.”

7. After surgery, what does the pathology say and what should I do now and in the future?

Once a tumor is physically removed, lab tests will be performed so the doctors can understand it better. The pathology report will help guide decisions like whether follow-up treatment, like radiation, is needed.

“Not every single patient needs radiation,” Mautner said. “But they at least benefit from a consultation.”

Doctors also advise breast cancer patients on ways they can improve their odds of avoiding a recurrence, including regular exams and exercise.

“A very healthy lifestyle is extremely important,” Samuel said. “There is plenty of research showing that cancer is less likely to recur in people who are active.”