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8 Questions to Ask After a Triple Negative Breast Cancer Diagnosis

Brandie Miller was alone in a room at her parents’ house when she got the phone call diagnosing her with triple negative breast cancer. She can flash back to that terrible moment with ease. It was July 2017, and Miller was only 33.

“You think, Am I going to die? Cancer is such an ugly word. It’s just so jarring to hear. It kind of rips through your body,” Miller tells SELF. “I had to check my feelings because I didn’t want to tell my parents at that time.”

When Miller made it to the doctor’s office with her husband later that day, the first thing her oncologist did was hug her, she says. “That just put me at ease because she knew how I was feeling. From that moment on, it clicked in my head that I’m going to be scared and have my down days, but…if I have this type of support from medical professionals and from my family and friends, I got this.”

Triple negative breast cancer means the cancer doesn’t have receptors for the hormone estrogen, the hormone progesterone, or a protein called human epidermal growth factor (HER2/neu), the Centers for Disease Control and Prevention (CDC) explains. You can read more about how triple negative breast cancer differs from other forms of the illness here.

If you research triple negative breast cancer after being diagnosed, you’re likely to come across some really daunting and frightening facts, like that it’s uniquely hard to treat. That’s true, but it doesn’t necessarily mean that you have no options and no more details to discuss with your doctor.

“Hope is very important,” Olufunmilayo I. Olopade, M.D., professor of medicine and human genetics and director of the Center for Clinical Cancer Genetics & Global Health at the University of Chicago, tells SELF. What’s more, doctors have made a lot of scientific progress in understanding triple negative breast cancer, says Dr. Olopade, who is also a fellow of the American College of Physicians.

After the initial shock of the diagnosis, here are eight questions to ask your doctor so you can chart a path forward.

1. What exactly does my stage mean?

Maybe you don’t want to know anything more than you have to at this point, which is valid. But if you find comfort in getting as much information as possible, it might be helpful to ask your doctor to explain what your stage means in detail. Knowing your exact stage helps you and your doctor determine your treatment plan and can give you an idea of your prognosis, the National Cancer Institute (NCI) explains.

Doctors can determine your stage through tests on tissue collected via biopsy, imaging, and physical examinations or during surgery, the American Cancer Society (ACS) explains. Which route makes the most sense will depend on your exact case of breast cancer.

Staging can get pretty detailed and varies based on the exact system your doctor uses, but the most important information staging conveys is if and where the cancer has spread at the time of diagnosis, along with details like the tumor grade, meaning how different the cancer cells are from the surrounding cells. This can indicate how quickly the tumor could grow and spread. Also worth noting: Your stage doesn’t change over time even if your cancer is treated or spreads.

You’ve probably heard of the cancer staging system that goes from 0 to 4. Stage 0 means the cancer is only in the part of the body where it first started, the ACS explains, while stage 4 means the cancer is metastatic and has spread to other parts of your body. Stages 1 through 3 can indicate how advanced the cancer is between these two extremes. These stages can be further divided into subtypes to offer more detail like, for example, where exactly the cancer has spread. That’s why you might hear terms like stage 1A or stage 3C.

There are other staging systems, like the TNM classification, which the NCI notes is actually the most widely used by hospitals and medical centers. It categorizes cancer by tumor size (T); if the cancer has spread to lymph nodes (N); and whether it has metastasized (M).

Whichever staging system your doctor uses, understanding exactly what your stage means and how it impacts your prognosis can be hard on your own. Asking for clarification can be really helpful.

2. What are my treatment options?

Because triple negative breast cancer doesn’t have receptors for estrogen, progesterone, or HER2/neu, it won’t respond to therapies that have been developed to target these biomarkers. Currently, the majority of triple negative breast cancers are treated with a combination of approaches, the CDC says.

One mainstay in triple negative breast cancer treatment is chemotherapy to kill the cancer cells or at least shrink the tumor. A seemingly paradoxical aspect of triple negative breast cancer is that its aggressive nature often makes it more susceptible to chemotherapy than many other types of breast cancer.

“Chemotherapy works best on rapidly dividing cells, because the more rapidly they’re dividing, the more rapidly they get killed by chemotherapy,” Nancy Mills, M.D., fellow of the American College of Physicians, medical oncologist at NewYork-Presbyterian Lawrence Hospital, and assistant professor of medicine at Columbia University Irving Medical Center, tells SELF. “So while [triple negative] is considered a more aggressive type of breast cancer, it’s also more responsive to chemotherapy.”

Then there’s surgery to remove the tumor (lumpectomy), one breast (mastectomy), or both breasts (bilateral or double mastectomy). Because triple negative breast cancer has a higher recurrence rate than other types and tends to be harder to treat if it does recur, some people choose to remove one or both breasts to counter the risk of it returning even when a lumpectomy or single mastectomy would technically suffice.

Other times, people base the extent of surgery on how much cancer is present. “If someone has a more locally advanced disease, meaning [underarm] lymph node involvement, then most likely they’re going to get chemotherapy and then surgery afterward with the goal being to try to shrink the tumor down before the surgery,” Dr. Mills explains. “If it’s a very tiny tumor and it can be easily removed, then they might just go for upfront surgery.”

Radiation to kill off any remaining cancer cells is also an option for some people. This is usually required for patients who don’t have a mastectomy, Dr. Mills says. For instance, Miller, who had stage 0 cancer, had a lumpectomy followed by chemo then radiation. She’s been cancer-free for just over a year.

As Dr. Mills explains, some patients who do have a mastectomy may still need radiation, like if multiple lymph nodes tested positive for cancer or if the surgeon found positive margins (meaning cancer cells were present right up to the edges of the tissues that were removed; this can indicate that there is still some cancer left behind). Radiation for triple negative breast cancer is typically done in 20-minute sessions four or five days a week for six weeks, the CDC says.

“We always like to try to get [treatment] moving relatively quickly,” Dr. Mills says. “You have to meet with a lot of different doctors when you’re diagnosed with breast cancer. That being said, if a patient needs a few days to think over their decision-making process, that’s okay. You’re allowed to think.”

3. Do I need any additional tests?

There are two main additional tests doctors sometimes recommend for people with triple negative breast cancer.

The first is genetic testing for mutations of the BRCA1 and BRCA2 genes, which can increase your risk of getting breast cancer (especially triple negative types) and ovarian cancer. Doctors might suggest this testing if you’re under 50 at the time of diagnosis and/or have a family history of breast and ovarian cancer, especially if a relative was diagnosed under age 50. You can read more about why and when BRCA testing is recommended here.

“[A BRCA mutation] can affect treatment, it can affect prognosis, it can affect surgical decision-making,” Dr. Mills says.

Some studies have found that tumors in people with a BRCA mutation respond particularly well to certain kinds of chemotherapy. Having a BRCA mutation also means you may want to consider having a bilateral mastectomy to remove both breasts (even if the cancer is only in one) and an oophorectomy to remove your ovaries to prevent cancer from developing there in the future. These are all options your doctor can discuss with you in detail.

The other test doctors are increasingly doing is for a protein called PD-L1 in patients with triple negative breast cancer that has spread into nearby tissues or distant parts of the body. (Unlike genetic testing, which is done on blood, this is done on sections of tumor drawn during a biopsy.) In March 2019, the U.S. Food and Drug Administration approved a new kind of treatment for locally advanced or metastatic triple negative breast cancer that tests positive for PD-L1. The treatment combines chemotherapy with an immunotherapy drug called atezolizumab, and other immunotherapy drugs are on the horizon.

4. Is there any way to make chemo easier to get through?

Chemotherapy is often seen as the most intimidating type of cancer treatment thanks to countless movie and TV depictions, but it’s not always quite as dreadful as it seems. We’re not going to pretend that going through chemotherapy is easy, but doctors are working hard to make it as tolerable as possible.

“Chemotherapy has a bad reputation,” Dr. Mills says. “A lot of those preconceptions are not correct.” Thanks to modern medicine (like antiemetic drugs for nausea and drugs to reduce the risk of complications like infection), a lot of people find that their chemo experience is better than they expected.

When Kirsten Greer was diagnosed with stage 2B triple negative breast cancer in 2013, at age 29, she asked her oncologist how chemotherapy would feel. He told her there would be side effects, but that there were also ways to mitigate them. “That was my experience,” Greer tells SELF. “I’d have a couple of down days, but I had a whole group of drugs that helped manage that.”

This meant she was able to work part-time from home and take off every second week when she had a chemotherapy session. “[It was] a good distraction, to solve a problem that’s not a cancer problem and feel like you’ve accomplished something at the end of the day,” Greer says. She did her best to carry that attitude beyond work too. “I tried to be at people’s events—birthday parties and baby showers—even though I didn’t feel like I looked cute or whatever,” she says. “I think it’s important to try to keep doing those things if you feel up to it.” Greer was also six months pregnant when she began chemotherapy, but her specific type of treatment didn’t affect her pregnancy, and she gave birth to a healthy daughter. (After that, she had a double mastectomy followed by radiation and was pronounced cancer-free in July 2013.)

Here’s more information on common chemotherapy side effects and how to deal with them. Your doctor may be able to offer up techniques for reducing whichever side effects most concern or impact you.

5. What can I expect from surgery and radiation?

As with basically anything else in life, not everyone has the same experiences with surgery and radiation. There are still a few general things to know.

Lumpectomies are usually outpatient procedures with an estimated recovery time of about two weeks, the ACS says. After a mastectomy, on the other hand, you’ll probably spend one or two nights in the hospital before returning home. Full recovery can take up to four weeks, though it can be longer (like if you also have breast reconstruction around the same time), according to the ACS.

Typical side effects for both procedures are similar, including pain, tenderness, and swelling. It’s estimated that 20 to 30 percent of people experience a more intense and chronic type of shooting pain in their chest, armpit, or arm afterward. This is known as post-mastectomy pain syndrome (PMPS), although it can also follow lumpectomies. Ask your doctor about how to know if that’s what you’re experiencing and how to manage it. You might also need a temporary drain under your arms to help remove fluid after a lumpectomy or mastectomy, which your doctor will show you how to clean. They’ll also talk to you about how to spot signs of infection.

As for radiation, one of the main side effects is fatigue, according to the ACS. This can, understandably, also affect your mood, especially since it tends to get worse as the treatment continues. It’s important to track your fatigue levels and report them to your care team. You might also notice changes in your skin, including dryness, redness, blistering, and irritation, which typically get more intense as treatment goes on. You can help protect your skin by wearing soft, loose clothes, avoiding the sun and hot water, and trying not to scratch your skin even when it feels like that’s the only way to get relief. Breast radiation can come with other side effects too, like soreness and stiff shoulders. Many of these changes recede after you wrap up treatment, though radiation can also cause longer-term effects like more or less sensitive breast skin, the ACS says.

6. Are there any clinical trials available for me?

Although there are no widely available targeted therapies for triple negative breast cancer right now, researchers are constantly working to devise new treatments. “There are a lot of newer drugs that are hoping to improve response rates, how long the cancer stays under control, and hopefully have better side effects or fewer side effects,” Rita Nanda, M.D., associate professor of medicine and director of the breast oncology program at the University of Chicago, tells SELF. This means it’s a good idea to ask your doctor if they know of any clinical trials that you might be a candidate for.

Not everyone is open to or eligible for clinical trials, but the more information you have, the more informed your overall treatment decision will be. “Learning about clinical trials is always a good idea for anyone,” Dr. Mills says.

Trials aren’t necessarily looking for miracle drugs. As amazing as that would be, doctors try to lay out more realistic aims. “For patients with early-stage disease, I’d say the goal is to cure you and never have this come back. I can’t promise or guarantee that will happen, but that is the goal,” Dr. Nanda says. “For those who have advanced-stage disease, I am very clear. I say that, unfortunately, this isn’t a treatment that is going to cure you, but our hope is to have you live as long as [you] can. Usually patients are pretty satisfied with that.”

7. Where can I get emotional support?

Some hospitals have a social worker on the oncology team to help answer questions about the practical and emotional aspects of a cancer diagnosis, and many also offer support groups within the hospital.

Miller found comfort in the other patients she met at hospital workshops, particularly one focused on how to do makeup during treatment. “I would say to anyone that’s going through treatment, utilize those programs,” she tells SELF. “You have your family and your friends, but you’re the one that’s going through the treatment, so you feel like you’re alone.… Having a network of other patients that are going through it in different stages is very helpful.” She also appreciated the support networks she found through the ACS.

That said, finding support in other cancer patients can bring emotional challenges. Greer joined two Facebook groups: one for people with triple negative breast cancer, and one for people who were pregnant during breast cancer. She found them quite depressing at times. In the pregnancy group, she says, “some people have died over the last five years from our original squad there. That’s hard because not only do you feel like they’re your friends but you imagine it being you who’s next.”

Greer still sees the value in seeking out this kind of kinship. “I need people who understand where I am because my friends don’t get it. When I meet people who are newly diagnosed, I give them that pro and con story: On the one hand, support groups are great because you can meet people in your situation. On the other hand, you’re going to see things that are hard.”

8. How do I prepare for life after cancer?

When you’re first hit with a diagnosis, it can feel like a wall has come down between you and the future, blocking you from looking ahead. And when you’re in the middle of treatment, contemplating life after cancer can seem at best a jinx, at worst pointless. But as your treatment progresses, it can help to have a plan.

“I wish I’d asked more about what to do after everything,” Greer tells SELF. “Like right now, years later, I’m finally dealing with some shoulder [tightness] issues that I think I have as a result of the mastectomy and radiation. I was so focused on not getting cancer again that I wasn’t thinking about improving my quality of life, but I think I could have if I’d addressed some of those issues.”

It’s not just physical symptoms that catch up with you after treatment is done. “You are going through so many emotions when you finally get that all clear,” Miller says. “I didn’t realize I would have something that feels like post-traumatic stress disorder until I had my next biopsy and they found some additional concerns in my breast. I remember going into the changing room and just crying. The doctor was like, ‘It’s probably nothing,’ but I had already heard that.”

Although Miller’s cancer hadn’t returned, the fear the experience stirred up made her wish she had some help navigating post-treatment emotions. “I wish I had talked to someone or talked to my doctor about how to cope with those anxieties and fears that I have when the appointments come around, or when I feel like there’s something wrong with me and I [go] back to that dark place of, Is this cancer? Has it come back again?”

Whether it’s with a therapist, a doctor, someone else who’s survived breast cancer, a partner, or a different person you trust, talking about your post-treatment feelings is very much worth doing. “Make sure that you’re okay mentally and emotionally,” Miller says. “You go through so much.”

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