Being diagnosed with breast cancer today is not like it used to be. The outcomes are often much better. The treatment options are also much greater, and they can be personalized to the exact characteristics of each patient’s illness.
But how does a patient navigate this new and ever-evolving territory? We interviewed breast surgeon Stephanie Akbari, M.D., FACS, to help patients find their way. Dr. Akbari is the medical director of the Center for Breast Health at Virginia Hospital Center in Arlington, Virginia.
Question: When a woman is diagnosed with breast cancer, her first thought is “Why me?” As a surgeon, you’re typically the first doctor a newly diagnosed breast cancer patient sees. How do you help them begin to cope with their diagnosis?
Dr. Akbari: I think the best way to cope with the diagnosis is #1, understand what your treatment options are, and #2, make a plan to address the problem. I find that once there’s a plan in place and there’s some activity towards fixing the problem, there’s much less anxiety and stress about the diagnosis.
Q: How important is it for a breast cancer patient to educate herself about breast cancer and its treatment?
Dr. Akbari: I think it’s extremely important because each patient brings to the table certain individual characteristics. Breast cancer treatment today is not one-size-fits-all. We try to individualize our treatment. So the better a patient is able to understand what the choices are and what would best meet her needs, the happier she will be in the long run. Education is the key to ensuring that we tailor our treatment to each individual person.
Q: What are the first steps that a patient should take to get educated?
Dr. Akbari: I encourage patients to use their breast cancer’s treatment team as a resource for the information they need. Many breast centers have a group of people — including the surgeon, the plastic surgeons, the navigators, and nurse educators — who can help patients find appropriate educational information. This is preferable to just jumping on the Internet. Even though there are many credible websites, patients might not know what does or doesn’t apply to them, and that can lead to a scary experience.
As an alternative, I would encourage patients to write down questions so that when they go to their doctor’s appointment, they can tick off each question and make sure that they get their questions answered. I would also encourage patients to take someone with them to take notes on the doctor’s answers. I personally take notes for patients and give the notes to them to take home, but not every doctor does that. There’s a lot of information delivered at each appointment, and it’s impossible for a patient to remember everything. So it’s very important to take notes and also have a second set of ears so that all of the information can be digested.
Q: Could you tell us a little bit about what genomic testing is and how it relates to personalized medicine for breast cancer?
Dr. Akbari: Genomic testing is a way of looking at each individual breast cancer’s behavior to determine how “angry” or aggressive it is. We used to do that by looking at the tumor under a microscope and measuring its size with a ruler. In 2013, however, we know this is not the best way to understand how a tumor behaves. Just because two things are the same size doesn’t mean that they’re going to behave the same way.
Molecular profiling allows us to get at the actual behavior of each person’s cancer — not just how big is it or whether the lymph nodes are involved but down to the nitty-gritty of how is that tumor behaving so that we can better determine which treatments are appropriate for those patients.
Q: Do you think a woman should be educating herself about this type of testing if she has recently been diagnosed?
Dr. Akbari: Absolutely. Molecular profiling is one of the standard National Comprehensive Cancer Network recommendations. So if it’s not brought up by the medical oncologist or the surgeons taking care of the patient, I do think the patient should understand what this is and how it would benefit her.
Q: What kind of support from family and friends do you think is helpful to someone who’s just been diagnosed?
Dr. Akbari: Everyone has different needs when it comes to this. Some patients relate to their diagnosis as a fight. They’re going to be very aggressive and try to win. Other patients are very scared and sort of paralyzed. They’re unable to take any action. So the family support network that each patient has should take into account how the patient is responding. Some patients need more help than others, too. The point is to meet the patient’s psychological needs in dealing with the diagnosis.
Q: What are some of the specific things that family members and friends on the support team can do?
Dr. Akbari: The main point is to provide a loving, caring, and – this is especially important — positive environment where all questions are fair game. Breast cancer patients often consider their operation to be disfiguring. It’s something that affects a woman at her core because of the physical appearance change, although different women feel differently about their breasts.
In general, I think conversations are very helpful. But there are also friends and family members who share experiences that may not have been good and that can scare a patient. That’s why being positive is so crucial.
Q: What is the surgeon trying to accomplish with the patient in the first consultation?
Dr. Akbari: Ideally, the surgeon will present all of the available options including risks and benefits and then comment on which option would be best for the patient based on her individual profile. What kinds of treatment are involved? Is chemotherapy recommended? What other specialists such as a medical oncologist or radiation oncologist will she be seeing? Will there be reconstructive surgery? What kind of imaging and other testing is needed? The idea is to give an overview of the entire process from start to finish.
Q: When should that consultation take place?
Dr. Akbari: It’s probably different for everyone. But the average would probably be two or three days after diagnosis. It really is best for that meeting if a lot of the initial emotional shock of the diagnosis has worn off, because it allows patients to focus better on the specifics of their treatment. I find that if patients just found out this morning or last night, they have a much more difficult time listening to the options. Then they need multiple appointments which sometimes can slow things down and frustrate them.
Patients also should understand that cancer is not quite the “every second counts” situation they think it is. Most experts believe that before breast cancer is seen on a mammogram, it’s been there for approximately two or three years. I say this so that patients know that it can sometimes take two weeks or more to appropriately tailor their treatment — but that timeframe is not harming them.
Often, additional testing is required, or MRIs, or consultation with plastic surgeons. The time we take to set those things up is very, very important, because we don’t want patients to look back on their experience and feel they were rushed through it and that they weren’t able to make decisions.
Q: Are there questions patients ask you during that initial consultation that other patients might want to include on their list of questions for their surgeon?
Dr. Akbari: Patients are not dying from breast cancer the way they used to. Many are living with breast cancer. So once people realize that they are not going to die from this, the most important thing they want to know in that initial visit is “Do you think I’m going to need chemotherapy?”
Everybody has heard of somebody who had chemotherapy and didn’t feel well and lost her hair. They’re not so scared about surgery or radiation but the chemotherapy part is very, very scary for most patients. I find that when patients come with questions specifically related to what they’re afraid of, we’re able to understand them better and meet them where they are, so that we can provide the most sensitive help.