What you need to know about breast cancer, with “3 Black Docs”

Choices about breast cancer treatment are among the biggest health decisions you will make in your lifetime. It’s important to understand your diagnosis and be included in these choices. But understanding a breast cancer diagnosis can be overwhelming; overnight, you are thrown into a world doctors study for years to understand. We’re here to help get you started.

Karen Winkfield, MD, PhD; Tiffany Avery, MD, MPH; and Zanetta Lamar, MD, are the hosts of “3 Black Docs,” a weekly podcast where they explore health, community, and life over cocktails. In this video they discuss the basics of breast cancer for Black women. This includes what your doctors really mean with the terms they use, and the important tests and treatments you should know about. It includes considerations for Black women: the disparities that exist in health care and advice to help you get the care you need and deserve.

Watch, listen, or read the transcript below. For more information about Black breast cancer, register for Knowledge is power: Understanding Black breast cancer, a webinar series by Living Beyond Breast Cancer with information, stories, and advice centered on the experience of Black women with breast cancer.

Resources mentioned in the discussion:

• Cancer.net
• Sisters Network, Inc
• Lazarex Cancer Foundation
• Cancer Services Online

Jean Sachs:

Welcome, everyone. I'm Jean Sachs, the CEO of Living Beyond Breast Cancer. We know when you're diagnosed with breast cancer, it is overwhelming. It's a complex disease, and there's so many things you have to do. What subtype are you? What stage are you? What test comes next? The list goes on and on. And we also know that the American healthcare system can be very challenging to navigate. If you're Black or you're brown, or you have limited finances, lack of insurance, a language barrier, or anything else, it can seem unsurmountable.

Jean Sachs:

Today, we're going to hear from three amazing doctors, Dr. Zanetta Lamar, Dr. Tiffany Avery, they are both medical oncologists, and Dr. Karen Winkfield, a radiation oncologist. They host a popular podcast entitled “3 Black Docs.”

If you haven't checked them out, please take a listen. Today, they're going to share with you what you really need to know when you're first diagnosed, and help you feel less overwhelmed and ready to take the next step.

Living Beyond Breast Cancer is so grateful to these three amazing doctors for sharing their time with us and with all of you. If you would like more information on their podcast or breast cancer information, please visit our website at LBBC.ORG.

Karen Winkfield:

We know that cancer is a complex disease, and it's especially overwhelming for someone who may be newly diagnosed, especially with all of the terms and all of the subtypes, et cetera. It can be so challenging just trying to figure out how to navigate the healthcare system, especially as Black people here in America.

My name is Dr. Karen Winkfield, and I'm here with Dr. Zanetta and Dr. Tiffany; we are the 3 Black Docs and we want to welcome you today. We're going to talk about what you need to know as a Black individual, as a Black person who's been newly diagnosed with breast cancer, and share with you some of the questions that you might want to bring to your doctors, and how you can support yourselves as a cancer patient.

So thank you again for joining us. Dr. Tiff, I'm going to start with you.

Tiffany Avery:

Yes.

Karen Winkfield:

You know, this is very complex. All cancers are.

Tiffany Avery:

Yes.

Karen Winkfield:

But breast cancer in particular, why don't you share a little bit about, what's some information that someone with a newly diagnosed breast cancer should know?

Tiffany Avery:

OK, so first things first, I want to thank Living Beyond Breast Cancer for doing this, because you know how excited I am about education, patient education, and educating the community. Because this is so complex and there's so much information that comes at you at once. The more opportunities patients have to hear the information, the better.

For breast cancer, everything boils down to what type of breast cancer you have, and what stage you were diagnosed at. So let's take those two concepts separately.

Stage. The first thing you're going to hear is stage, which could be anywhere from one to four. It could be zero if it's a non-invasive breast cancer as well, which is called DCIS or LCIS, but if you have an invasive breast cancer, the staging is going to be from one to four.

One is the earliest stage, four is the later stage. What it means is that stage I, II, and III are still local, meaning that the cancer has not spread to outside of the breast or outside of the lymph nodes associated with the breast. When you have stage IV, it means that the cancer has spread from beyond the breast and the lymph nodes associated to the breast to other parts of the body. And so your stage is critical, because it will tell, or it will determine how your treatment plan goes.

So from stage one to three, we talk about being curable, and with stage four, we talk about treatment that will keep the cancer controlled.

Karen Winkfield:

So I'm going to go to Dr. Zanetta. Dr. Z, I want you to talk about some of the tests that we use to determine whether or not someone has breast cancer and what their stage might be. Why don't you go into that for us?

Zanetta Lamar:

Sure, and I'm so excited to be here. Thank you so much, Living Beyond Breast Cancer.

We are so happy to speak to you and to educate you about breast cancer. I see breast cancer patients all the time, and when I first walk into a room, it's really just, "You know what? I want you to know that there are people who care about you, and we are here to take care of you." Feeling comfortable with your treatment team is really important, and like Tiffany said, there will be a lot of people that you come in contact with. Sometimes, you may see a surgeon first. Sometimes, you may see a chemotherapy doctor like me first.

I know a lot people, you've experienced breast cancer or you've known someone who has breast cancer. And Dr. Tiffany was talking about the different stages, but there are lots of tests that we do, and some of those tests depend on the stage of disease. Most women would have had some sort of imaging of their breasts. And what I mean by imaging: a mammogram, in some cases we do an MRI to evaluate the breast tissue further, depending on the stage, we may do a CT scan. And this is something that's unusual, because I see a lot of people, and they say, "Hey, when am I going to get a CT scan of the entire body?" If you have an early stage breast cancer, we know that the likelihood of it spreading beyond your breast is pretty low, so you may not get a full CT scan of your body. That's really an important point that I would want you to know about.

We do mammograms, we may or may not do MRIs. And so there will always be some sort of a surgery in the form of a biopsy. But there are different types of surgeries that we do for breast cancer. There is something called a lumpectomy, which takes the breast tumor, and that's a smaller surgery. And there are different criteria that we use to determine who may or may not get that smaller surgery. There is also something called a mastectomy, and that's when the entire breast tissue is removed.

When we think about breast cancer and what to ask early on, one of the most important questions to ask is, if I'm a candidate for surgery, what kind of surgery will we have?

Karen Winkfield:

You know, what's interesting is that often times, people get confused. Cancer can happen in any organ in the body.

Zanetta Lamar:

Absolutely.

Karen Winkfield:

And the breast has two specific types of tissue that's important. And I know Dr. Tiffany had mentioned DCIS. Remember, the breast is made of these organs called lobules, and that's where if the woman is breastfeeding, for instance, that's where the milk is made is the lobules. And the duct tissue is literally the conduit where milk goes to the nipple, and so that's the duct. And either one of those tissues are specific to the breast and can become a cancer.

Ductal carcinoma in situ just means that there's a tumor that's formed inside the lining of the duct. And similarly, lobular carcinoma in situ, LCIS, is where there's tumor that's sitting inside of that lobule. Hasn't come out, hasn't broken out yet.

So remember, when Dr. Zanetta is talking about the ability just to go in and do a small surgery, a lot of it's based on, has it spread outside of the organ? Is it an in situ? Is it ductal carcinoma in situ? Or is it invasive, meaning it's had the opportunity to break outside of the duct or lobule? If it has, then that may mean that you might need to get a sentinel node biopsy.

Dr. T, why don't you share a little bit about sentinel nodes?

Tiffany Avery:

Yeah. The sentinel node is the first node that drains from the breast. So lymph nodes drain parts of the body, and when a surgeon wants to look at whether or not there's cancer in the sentinel node, what it means is that they find the first lymph node that drains from the breast to see if there's cancer there. And that helps with cancer staging.

That was actually a huge advance in surgery, because before the sentinel node biopsy, women and men with breast cancer were getting a lot more lymph nodes removed, which can cause trouble down the line with swelling, lymphedema in the arm. Now-

Zanetta Lamar:

Lymphedema, meaning the swelling... yeah.

Tiffany Avery:

Yeah, swelling of the arm. Right. And so now, with being able to sample just that first lymph node draining from the breast and being able to stage a cancer that way, that has saved a lot in terms of complications.

I think what is interesting and important here to mention, though, is we're talking about a lot of different pieces of treatment. That is a very basic thing to wrap your mind around if you have a new diagnosis: There are different oncologists who do different parts of your treatment. Depending on your stage, the parts of your treatment will consist of surgery, so you'll see a surgical oncologist about surgery, then a medical oncologist to talk about chemotherapy, possibly, or endocrine [hormonal] therapies, pills that you might take depending on what type of breast cancer you have, and then you will also see a radiation oncologist like Dr. Karen, to talk about whether radiation treatment is indicated.

I think part of the whirlwind when you're first diagnosed, besides just hearing the C word and getting past that initial shock, is that once you get that diagnosis, things start rolling. All of a sudden, you've got three appointments. You got to be here, there, and everywhere. And it's like, who are all these people? But those are the three, it's your surgeon, your med onc person for chemo, and endocrine therapy...

Zanetta Lamar:

Medical oncology, yeah.

Tiffany Avery:

And then your radiation doc. And then also a plastic surgeon in some instances, if you're talking about reconstruction.

Karen Winkfield:

So you talked a little bit about the different types of treatment. You mentioned endocrine therapy.

Tiffany Avery:

Yes.

Karen Winkfield:

And I think that brings up an important point, because when the tissue is taken out, it gets looked at under the microscope. Remember, it's not just those three doctors. There's a whole team around you when you get a diagnosis. There's a pathologist, which is a doctor that looks at the tissue underneath a microscope, we already mentioned that there may be a mammogram or MRIs or other screens. There's a radiologist who reads those images.

When that pathologist looks underneath the microscope, they're looking for a couple of things. Which tissue did it come from in the breast? What's the grade, meaning how aggressive does that tissue look? And that gets scored on a one to three scale. It could be a grade one, which means it looks quite normal. It looks very close to what a normal breast tissue looks like, versus grade three, where it looks very aggressive. And that can actually help to dictate what some of the treatment might be as well.

But we're also looking to see if there are special markers or proteins on the outside of the cell. So Dr. Zanetta, talk about those proteins, and talk about — specifically for Black women — what some of the challenges may be around these markers.

Zanetta Lamar:

Exactly. Any time we look at a pathology report, we always want to know whether or not those markers are estrogen positive, we call that ER. We also have progesterone positive, and there's also something called HER2/neu. Why that's so important is because as a medical oncologist, that determines what test I do, it determines what treatments I do, it determines whether or not you get a pill.

The thing that's so specific in Black women is that often in Black women, none of those markers may be present. And so, treatment options may vary significantly because of that. That's something that we call triple-negative breast cancer.

When you are diagnosed with breast cancer, I recommend all of my patients get a copy of their pathology report. You should know what is being said about you. On that pathology report, it may say something like invasive ductal carcinoma. It may say ER positive and tell you how positive the ER is. It will tell you how positive the PR is or whether or not the HER2 is positive. And triple negative, you won't see any of that.

And so that's really one of the challenges that we have as Black women in treating breast cancer, because it limits some of our treatment options.

Tiffany Avery:

I was going to pause for the cause. Because I think we have covered the top three things that I think everyone should know. And so if you get nothing else, get this.

Zanetta Lamar:

Let's do a quick summary again.

Tiffany Avery:

Yes.

Zanetta Lamar:

For our people.

Tiffany Avery:

Because we just covered it real quick, but these are the points that I think everyone should know. And that is, know your stage, know what type of breast cancer you have by receptor status: ER, PR, and HER2.

Zanetta Lamar:

Right. Versus triple negative.

Tiffany Avery:

Right. And the third thing is, I see a lot of confusion between grade and stage. So I'm so glad you brought that up, Karen. And that is that your stage is from I to IV, or even zero if it's not invasive.

Zanetta Lamar:

Or DCIS.

Tiffany Avery:

Right. Your grade is what is on the pathology report about how your tumor looks under the microscope. I think if you get those three things, you're already...

Zanetta Lamar:

You're ahead of the game.

Karen Winkfield:

Let's talk a little bit about why this is important.

So any time there's a breast cancer diagnosis, a clinician is going to say, “What are the tools that we have in our toolbox to treat this?”

And all of this information is important. The ER/PR, Estrogen and progesterone, those normal hormones that women have, can sometimes drive tumors. It's important to know if those are present, because we have special medicines, usually by pill, that can be taken that can help reduce the levels of estrogen that are in our body, or to even prevent those cancers from seeing, if you will, the estrogen.

Now, HER2, I tell you, there's a medicine called trastuzumab [Herceptin and biosimilars] which has revolutionized the treatment of HER2-positive tumors. Which one of y'all want to take that, my medical oncology colleagues?

Tiffany Avery:

Well, I'll take. Because I have given whole hour-long talks just about HER2-positive breast cancer.

Karen Winkfield:

For sure.

Tiffany Avery:

Just about triple negative. But this is what I'll say, broadly and generally. In terms of the different subtypes, the ER/PR positive subtype is the most common when you look...

Zanetta Lamar:

Across the board.

Tiffany Avery:

Across the board, across the U.S. That's about 60 percent of breast cancer diagnosis, which is ER/PR positive. Now, besides treatment options, it also tells us about how the cancer will behave in terms of aggressiveness, in terms of chances of recurrence or where the cancer may recur. And so the ER/PR positive breast cancers tend to be the least aggressive and the most common across the U.S. in general.

Tiffany Avery:

The issue is that when we start to look at Black women, and we start to look at the more aggressive subtypes of breast cancer, the triple negative, meaning that you don't have any of those three markers. ER is negative, PR is negative, HER2 is negative. Or the HER2-positive breast cancers. Those two subtypes tend to behave more aggressively, and African American women, Black women, have higher rates of triple-negative breast cancer when compared to other groups.

That's important, because it's already a more aggressive breast cancer. Now, to talk about strides that are made with cancer treatments, so you mentioned trastuzumab and other drugs like it, which are targeted to HER2. That means, if you think about chemotherapy, chemotherapy is going to hit every target. Tumor cells that are dividing in your body, but regular cells that are dividing within your body, that's where some of the side effects come from, because when you're-

Zanetta Lamar:

And that's, I think, an important point real quick.

Tiffany Avery:

Yes.

Zanetta Lamar:

So chemotherapy kills rapidly dividing cells.

Tiffany Avery:

Period.

Zanetta Lamar:

And that's one reason why with chemotherapy, you lose your hair, because your hair follicles are considered rapidly dividing.

Tiffany Avery:

Yes, or you get nauseous or you get diarrhea because it's GI tract.

Zanetta Lamar:

Because it's an impacting, right.

Tiffany Avery:

Back to the HER2, though.

It's a targeted therapy, which means that it will seek out, if you will, the cancer cells, and leave normal, rapidly dividing cells alone. And so you don't get the same level of side effects as you do with regular chemotherapy.

Now the issue with this is, triple-negative breast cancer, until very recently, we didn't have any targeted therapies. And that is an area that is rapidly evolving right now. The latest stride, if you will, in triple negative, has been immunotherapy in the metastatic setting. But this goes to the important piece of clinical trials. Because the thing about triple negative breast cancer,

A. Black women get it more.

B. It's aggressive.

C. Less treatment options because those targets have yet to be identified, and the targets that we have in triple-negative breast cancer that have been identified are in clinical trials.

So if you get a triple negative diagnosis, you want to ask about possible clinical trial options, and that is why, and I'm going to be quiet. Go ahead.

Karen Winkfield:

So let me just back up too, because I think it's really important again. We're all talking about treatment, et cetera, but it's really important to know that not everyone with breast cancer will need chemotherapy. And there are some tests-

Zanetta Lamar:

And that is an important point.

Tiffany Avery:

Yes.

Karen Winkfield:

There are some tests that we can do, so Dr. Z, talk about some of the tests that we do to differentiate who needs chemotherapy and who doesn't.

Zanetta Lamar:

Sure. So in our oncology lifetime, there have been these genetic tests that we will send on the actual tumor specimen, and it will identify several different genes to see your risk of having an aggressive breast cancer, and in 10 years, how long will you live? A lot of these tests are predictive also of how well you will do with chemotherapy.

One of the more common tests that we do is something called Oncotype DX, and there are others. There's PAM50, there's MammaPrint. Depending on where you are in the country, different people may use different things. There are advantages and disadvantages for both.

Zanetta Lamar:

The most important thing that this test does, it saves us from giving chemotherapy to people who do not need it. That is so important because I actually remember a day when we used to guesstimate. We would sit and say, "The risk is about this much." Now we have objective data that will say, "You know what? The chance of you being alive in 5 or 10 years is like 95 percent, so we don't recommend that you have chemotherapy."

Honestly, more of my conversations now are not about chemotherapy. Because of improvement in screening, we're seeing earlier stage breast cancers, and I can say, "Hey, you know what? You might just need a pill, or you may just need nothing at all."

Karen Winkfield:

And this is why it's so important. First of all, this is why it's important not to compare your compare your cancer to someone else's.

Tiffany Avery:

Yes.

Zanetta Lamar:

Everybody's journey is different.

Tiffany Avery:

Say it again for the people in the back. Hear it.

Zanetta Lamar:

Say it again. Say it again.

Karen Winkfield:

Everyone's cancer is different, y'all. So stop comparing yourself one to the next.

Tiffany Avery:

Yes.

Zanetta Lamar:

Right.

Karen Winkfield:

And that's why it's really important to ask the questions. Asking about what your stage is, asking about your marker status. Asking about your grade. Asking about your genetic tests and if you've had it done. And if you're young women, because we know breast cancer affects young Black women the most, right?

Zanetta Lamar:

Yes.

Karen Winkfield:

So triple-negative breast cancer in Black women, happens in young Black women. Any woman that's under age 45 who's diagnosed with breast cancer, they need to be checked to make sure, at least have a conversation with a geneticist, or somebody who's going to say, is there a possibility that you might be carrying a known marker in your family. Or if you have a mother or a sister that has breast cancer, perhaps it may mean we might need to check, right?

These are important questions to ask, because it's really important not only for your treatment, but also again, you don't know. Your girlfriend down the street may have breast cancer too, but it may not be the same exact thing that you have and treatments will vary.

Tiffany Avery:

And can we talk about this for a minute? Two things. I hope I don't forget my points. OK, One: genetic testing. If you have triple-negative breast cancer, because of the association between triple-negative breast cancer and genetics in breast cancer, anyone up to the age of 60 — so 60 or younger — should be getting a referral to a geneticist.

Karen Winkfield:

And that's BRCA1. You may have heard that the BRCA1 or B-R-C-A-1 gene...

Tiffany Avery:

Right. Or 2.

Karen Winkfield:

...is really the one that's most closely associated with triple-negative breast cancer in Black women.

Tiffany Avery:

Yes, BRCA1. Yes. Correct. Now, the second point I wanted to make, when you were saying, try not to compare yourself to others, also, try not to compare yourself to others when it comes to stories about how people tolerated treatments, OK? Because here's the thing. Your treatment plan is individual and specific to what you need.

A lot of times, we will see patients who have already heard that this person had a terrible time with chemo, or that person had a terrible time. You don't know if they're getting the same treatments. You don't know if they had underlying conditions that made stuff worse. You don't know if their doctor was doing everything they could to optimize other ways to get through those side effects. So please, please, if you have heard from other people about “well this was horrible” and “that was bad” just keep an open mind, because it's specific to you.

Karen Winkfield:

Yeah. Now you said something that reminds me of Dr. Z, because she is the communication guru here. And so I'm going to pass it off to you. And I want to talk about radiation and when radiation therapy is indicated, but Dr. Z, go ahead and follow up on this line of thinking.

Zanetta Lamar:

Well, right. One of the things that's really important to communicate with your doctor is how you are feeling during treatment. I encourage all of my patients to write it down. If you say, "You know what? I'm having trouble. I picked up a cold drink and my hands were tingly." Write it down. I want to know about it. I want to know about it, because I can't help what I don't know.

And sometimes it's hard. I may not be able to pull out the information. If someone's giving you chemotherapy as a medical oncologist, we want more than anything for you to do well with it, to be able to tolerate treatment.

And one of the other things that I want to bring up — and I know that Dr. Karen wants to get to radiation — one of the things that happens, especially in a lot of my minority patients, particularly my minority women patients. Inevitably, women are often the bedrock of the family. You are taking care of every single soul in your home. You may be the primary breadwinner. So you may not have time or money for a diagnosis of cancer. There's never a perfect time for this.

And so one of the things that I think is really important is to have your community support you during this time. You need that support. You need people to carry you during this time, and don't be afraid to ask for help.

Don't be afraid to ask from your healthcare providers, from your nurses, from your family, from your church or other community organizations. For financial help, because in all of our offices, we have people who are dedicated to helping with the financial burden of chemotherapy. And we don't know if you don't ask. I heard this one stat that I was actually surprised about, that in the first 6 months of a breast cancer diagnosis, there has actually been found that partners have more emotional stress than the patients themselves.

Tiffany Avery:

Oh wow.

Zanetta Lamar:

Isn't that interesting?

Tiffany Avery:

That is interesting.

Zanetta Lamar:

That the partners are actually more emotionally distressed. People who are in your life, don't push them away. Because they're a part of this journey too.

So Dr. Karen was going to talk about radiation.

Karen Winkfield:

Go ahead, Tiff. Did you have something you wanted to add?

Tiffany Avery:

Just one quick thing, then you can talk about radiation.

Karen Winkfield:

Thank you.

Tiffany Avery:

With what Zanetta was saying, also think about someone to bring to with you to your appointments to be a second set of ears and to write notes.

Zanetta Lamar:

Right. Because patients only remember about 10 percent of what's said in the appointments.

Tiffany Avery:

And guess what? We know that. And we know that you don't want to be in a cancer center, your mind is spinning with a million things. We know that most of what we say, you might not get. And we know that, and we expect it. If you have someone who is there as your pair of ears and taking notes, that is great.

Zanetta Lamar:

And I will say in the era of COVID, a lot of times, in my clinic actually, we're not letting visitors in. But we have them on the phone, have them on FaceTime, whatever we need to do for someone else to be a part of the appointment. There shouldn't be an oncologist in the world who isn't able to accommodate that.

Karen Winkfield:

Well, I do want to talk a little bit about this too, because in particular for breast cancer patients, you mentioned there's this superwoman [mentality], that we can do it. It's really important. And yes, men get breast cancer too, but this is really a disease of women primarily. And often times, people suffer in silence.

There are some of our therapies, maybe they won't lose their hair, and nobody's necessarily looking at their breast. So there are women, particularly Black women, who suffer in silence, because they're afraid to tell their community or their family, or they don't want to. They don't want people in their business. But they also have to continue to work, or they continue to have to take care of their family.

And so it's one of these things that's really important to find your... the Bible talks about the spice and stone. Who are your people that are in your pocket? Who are your people that you can rely on, that you can trust, that you know are not going to spread your business? If you don't want to share, then that's up to you. Some people want to tell the world, and that's fine too. You have to find what works for you. And find out, though, how you can actually utilize your community, whether that be your family, your friends, or your church family.

Karen Winkfield:

Because it's not good to suffer in silence. There's a lot of mental anguish, and that stress can actually impact your outcome.

Zanetta Lamar:

Absolutely.

Tiffany Avery:

Yes.

Karen Winkfield:

And just remember that what we're saying is really to say, we want you — if you're going through this journey and you're newly diagnosed with breast cancer — we want you to have the best outcomes. That's why we're doing all those tests, to say, what are the tools that we need to use. But then know that your team that's around you, your doctors, the nurses, the therapists, we're here for you. And please speak up if you are having mental anguish. If you say, I don't have a community, because there are probably some who don't, who really are going through this journey alone. Let us help you find a community that can help you go through this journey.

Tiff, did you have something you wanted to say before?

Tiffany Avery:

Very well said, Dr. Karen.

Karen Winkfield:

Well, thank you.

Tiffany Avery:

And now I'm going to put on my Dr. Karen moderator voice. Excuse me. So Dr. Karen, could you please tell us.

Karen Winkfield:

So dramatic.

Zanetta Lamar:

She did the neck too.

Karen Winkfield:

Oh, did she? Oh.

Zanetta Lamar:

Yeah, she did the neck. She did the neck.

Tiffany Avery:

Could you please elaborate on the use of radiation therapy for a newly diagnosed breast cancer patient?

Karen Winkfield:

Well, absolutely I will. Thank you very much.

Tiffany Avery:

Thank you, thank you.

Karen Winkfield:

So I am going to just say, radiation therapy, first of all, is just the use of X-rays to treat cancer. OK? People have X-rays, they have a cough, they go to the emergency room, they get a chest X-ray. Does it hurt? No. Does it sting? No. Does it burn? No.

So radiation therapy is the same principle. It's the same type of energy, and we just turn it up just a hair. And what that does is, it actually causes damage inside each cell in your body. Yes, it affects normal tissue too. But it actually causes damage within the tumor cells that may still be present, and it prevents them from making copies of themselves.

Now, people might say, well, what is the purpose of radiation? I've already had surgery. Surgery took the tumor out, so why do I need radiation? Well, remember we talked about those clinical trials, right? We talked about research and the importance of it. Back in the day, women who had breast cancer often times would have these very morbid surgeries, where they would do a mastectomy and take off muscle and take off all sorts of stuff.

Zanetta Lamar:

Disfiguring.

Karen Winkfield:

Very disfiguring. Lymphedema, swollen arms. And over time, people were like, is this necessary? And eventually, what happened is, instead of doing all of that surgery, instead of taking off all the tissue, we started using radiation therapy as an adjunct to the surgery. So is there a way to just take out the tumor and then give radiation therapy to help sterilize the rest of the tissue, if you will?

What we found out through that research is that women who have lumpectomy, followed by radiation therapy, have the same outcomes as women who go through mastectomy. So that's an important thing to note. That if you have a lumpectomy, the standard of care means that you also need to have radiation therapy. For most women. There are some women, if they're over 70 and have very small tumors that have estrogen and progesterone receptors, you might not need radiation therapy. But for most women, particularly young women, if you have a lumpectomy because you have an invasive cancer or you have a ductal carcinoma inside you that's over five millimeters, which is wee, wee, tiny. If you have a tumor and you just get lumpectomy, radiation therapy is part of your treatment.

And that's important, because I've had patients say, "Oh, I just do what the doctor said, and the surgeon told me I won't need radiation, or I won't need chemotherapy." And I'm like, excuse you?

Zanetta Lamar:

What?

Karen Winkfield:

Really important. And I understand, please, do not misunderstand me. It's really important to trust your doctor. But that means you need to have conversations with your doctor. So that's why we're trying to provide some tools to talk about.

It's really important to have conversations up front before you make a decision about surgery. Because I've had women who say, "I was told if I have a mastectomy, I won't need radiation." Well that's not true either. What happens if you have a very large tumor? Or what happens if you have lymph nodes involved? The radiation therapy doesn't just take care of breast tissue, it takes care of the entire region. And it's really important.

Now, here's one of the things to keep in mind. While radiation therapy doesn't hurt, sting, or burn when it goes in, the course of radiation therapy can be pretty long. It can be anywhere from 3 1/2 weeks to 6 weeks depending on whether you just need your breast treated, or whether you need your lymph nodes treated. Again, it helps take care of regional areas that surgery wouldn't be safe to take care of. Nobody, no surgeon is going to take care of these nodes up here above your clavicle. But they will take care of nodes in your armpit, right? But these nodes up here, we can give radiation therapy very safely and without having a lot of morbidity or toxicity. OK?

Zanetta Lamar:

And Dr. Karen, can you expound on how radiation has changed? Because a lot of women will say, "Oh no, they're going to burn me up."

Karen Winkfield:

Well it's changed dramatically. Thank you for bringing that up. If we were talking 30 years ago, first of all, we didn't even use CT scans. When we talk about these CT scans, which are important for looking at and staging some cancers, we actually use CT scans now to guide our therapy. Which means, we can better target where the radiation therapy goes.

Back in the day, we didn't do that. Often times, women were getting treatment to large areas of their body that they didn't need to. Every woman's body is different. The beautiful thing about getting a CT-based plan for radiation therapy means I can actually target a radiation exactly in the area it needs to be, but spare important normal tissue like the lung, which is underneath the chest wall, and also the heart, which is on the left side of the body. And so we really want to be able to do that with radiation.

We also are using machines that have much better targeting capacity. They're not treating with the low dose — which means women, where their skin would get really ripped up. And it was bad. It would definitely get burned. Now we're using much higher energy, which allows us to treat in the area and causing less damage.

Now, I'd be lying to you if I told you there would not be any side effects. And let me tell you, radiation therapy impacts Black women differently. And this is an area that I'm researching actively. For my white patients, often times they'll come for radiation therapy, they'll get treatment the first couple of weeks no changes. Eventually I'll start to see a little pink on their skin.

Well, for my Black patients, that's not the case. My Black patients, what usually happens is, they're doing fine, and then towards the end of treatment, all of a sudden, one day, all of a sudden, boom. Their skin turns black. It's really dark.

Zanetta Lamar:

Yeah. Very dark.

Karen Winkfield:

And that discoloration can last for a long time. And the challenge is that a lot of my colleagues who may not be Black might not even pay attention to that, and will keep treating, or won't talk about the importance of skincare, when that skin turns dark like that.

Zanetta Lamar:

Can you touch on that a little bit? Because a lot of people don't talk about the skincare and what should be done.

Karen Winkfield:

It's so important. From day one, when my patients start treatment, I encourage every woman who comes, and every man who has radiation therapy, to moisturize their skin. Any kind of lotion, I don't care what it is. You don't have to get anything fancy or expensive. You go ahead and you get the CVS brand, whatever, as long as it's non-fragrant or hypoallergenic, or you can use whatever you have at home. I don't care if you use baby oil or something. Just moisturize your skin a couple of times a day.

Number one, radiation therapy can dry your skin out.

Zanetta Lamar:

And so does chemotherapy. Chemotherapy really dries your skin out. Often we'll do chemotherapy first, so you're going in with dry skin, depending on how you're being treated. These are good points.

Karen Winkfield:

So the skincare is important, and I do tell people, not just moisturizing with lotions, et cetera, but moisturizing from the inside. So drinking water.

Water, believe it or not, is really important during the course of chemotherapy even. You're flushing the toxins out of your body. And so it does help to hydrate the skin when you're drinking the water as well.

And I do think that it's important, even if you talk to the radiation oncologist and you're having meetings with them, and they're talking to you about the side effects of radiation, they talk about skin, say, “Well what do you recommend for skincare?” That's an easy question to ask. And there might be some slight nuances, some slight differences in terms of what someone might recommend. But really important.

And always, every week, again, this might be 3 1/2 weeks or 6 1/2 weeks of therapy, depending on what your specific cancer is and what needs to be treated. Every week, you should be seeing your radiation doctor. Every week. To check in so that they can look at your skin and make sure that everything's going OK. And that's a great time to ask questions as well. Anything else?

Zanetta Lamar:

That was radiation 101, Dr. Winkfield.

Tiffany Avery:

Yes. And I feel like you guys don't get enough time to really talk to people about radiation, in my opinion.

Zanetta Lamar:

I agree. I thought that was good. And sometimes we will use a different term for lumpectomy and radiation. You may hear the term breast-conserving therapy. That means the same thing as a smaller surgery plus the radiation.

Karen Winkfield:

And that's important to know, because again, the majority of women, if you have the option, most women, about 70 percent of women want to preserve their breast. You can have breast-conserving surgery, which is the lumpectomy, but again, if you have that, important to include the radiation. And then it becomes breast-conserving therapy.

Karen Winkfield:

And so the options often times may be presented, do you want breast-conserving therapy or are you interested in mastectomy? And the other thing that Black women often times don't get. And this is going to be a little bit off. If we're talking about mastectomy now, often times Black women aren't always encouraged to think about reconstruction. And I bring that up, because let me tell you something, I have seen women who have had mastectomies and I couldn't tell that they had a mastectomy. That's how good the surgery was, OK? They have all kinds of mastectomies. They have skin-sparing mastectomies. They have nipple-sparing mastectomies.

And so it's really important, again, before you have surgery, to talk about what your options are. And if you're going to do breast-conserving therapy, lumpectomy with radiation, that's fine. But if you're electing to have a mastectomy, please ask about whether or not you're a candidate for reconstruction, and that will mean you having an appointment with yet another doctor, a plastic surgeon, but it's so important.

And please take the time to do that. If you get a diagnosis of breast cancer, there are very few breast cancers where you have to make a decision that day. Very few, right?

Tiffany Avery:

Right.

Karen Winkfield:

I mean what, maybe inflammatory breast cancer?

Zanetta Lamar:

Yeah, inflammatory, you need to see us yesterday. But outside of that, really you should have time.

Karen Winkfield:

Exactly. So you have time, but not a whole lot of time. Don't dilly dally.

Zanetta Lamar:

Not 6 months. We're talking a few weeks.

Karen Winkfield:

Exactly. You're talking a few weeks. Exactly.

Zanetta Lamar:

Not 6 months.

Tiffany Avery:

And just as a note, as you're seeing all these different doctors, the sequence of your treatment, whether you get chemotherapy first, then surgery, or surgery first, then chemotherapy, those are all also based on your particular situation. You might hear of a friend that got surgery first, then chemo. You might get a recommendation to get chemotherapy first to shrink the tumor and then get surgery. So that's an option as well.

Once again, just being aware that there's so many different ways to treat based on what is going on with you as an individual.

Zanetta Lamar:

And when we talk about terms, if you get chemotherapy before surgery, that's called neoadjuvant. So you may hear, we throw out these terms all the time because we really like to sound smart. We paid a lot of money for school so we need to sound smart.

Instead of saying chemotherapy before surgery, we'll say, "You know what? I recommend that you have neoadjuvant therapy." Or if you have chemotherapy after surgery, we call that adjuvant therapy. Just a little term to be aware of.

Karen Winkfield:

Yeah. And just know that from a radiation perspective, if you don't need chemotherapy — again, we've already established, not everyone who has breast cancer will need chemotherapy — if you have a lumpectomy, if you have breast-conserving surgery and will need radiation, the radiation therapy is done after surgery. Usually, I like to wait anywhere from 6 to 8 weeks after surgery to begin radiation. Your body needs to heal. You need to heal from the surgery. The surgeon goes in and takes that tumor out with a little rim of normal tissue around it. But they don't sew that tissue together. They leave it open. And there's fluid that can collect, and it takes time for your body to heal over time. That's called a seroma.

Zanetta Lamar:

Repeat that word?

Karen Winkfield:

Seroma. S-E-R-O-M-A. Some of you may have had a lumpectomy and felt like, "Oh, it feels like there's a balloon or something that's in there. That's the fluid collection, and over time, your body should get rid of that. But occasionally, I have seen where patients, it's not going away, and you might need to go back and see your surgeon. And they can stick a little needle in there and take some of that fluid out. It's usually right there in the room, you don't have to go to the operating room or anything like that.

But do know, it's OK to call your surgeon. If you're having an issue or you're having some pain that lasts for more than several weeks, call your surgeon.

Zanetta Lamar:

Particularly if it's associated with a fever.

Karen Winkfield:

Yes. Definitely if it's associated with a fever.

Zanetta Lamar:

Please.

Karen Winkfield:

So we probably need to move to what resources patients can have. Because we've talked a lot about the types of cancer that they are, the testing that we can do to figure out what the stage, the different types of treatments. But this is a tough journey, right? This can be a challenge, and we've already talked about trying to develop our support systems. But what other supports are there for patients?

And Dr. Z, tell us about what you do for your breast cancer patients down there in Florida.

Zanetta Lamar:

Sure. Sure, sure, sure. I like to read books, and I like for my patients to have books. Actually, one of my favorite books for patients, I don't know if I'm able to do this, but I'm going to do it anyway. But it's called, can you see this? I'm going to take the hospital name out. But it's “The Breast Cancer Treatment Handbook.” And it's by a lady called Julie Kneece, K-N-E-E-C-E. And this is actually, I think it's a good book to have. It goes through basically every single term. It has very good questions to ask your surgeon, to ask the plastic surgeon, to ask the radiation doctor, to ask the chemotherapy doctor. There are pullout worksheets for you as well, and I actually looked it up on Amazon last night and it was five dollars.

Karen Winkfield:

Wow.

Zanetta Lamar:

So this is well worth your time, and believe it or not, I keep it at home because I like to see what my patients are reading. And I like to have it too. So I think that's good to have. You want to have a nice educational resource.

And really, Living Beyond Breast Cancer is a wonderful, wonderful resource. They have hotlines. They have people that you can talk to. And the fact that you are plugged into this seminar says so much, that you are already plugged into a network that is invested in you.

One of the things that I saw everything from vaginal health to supportive care, to...

Karen Winkfield:

Wait, you mean like sexual health is important with cancer? Sexual health?

Tiffany Avery:

Oh yeah. That's another hour talk.

Zanetta Lamar:

Sexual. Let's talk about it. Talk about it.

Tiffany Avery:

I don't think we have another hour.

Karen Winkfield:

Living Beyond Breast Cancer, yes. But that's great. And Tiff, what other? Because I know you've also been able to provide resourcing for your patients. So talk a little bit about that thing.

Tiffany Avery:

Yeah. You know what, what I would say first is, start local. Ask at your hospital if there are patient navigators. Because the difference that a patient navigator makes in terms of getting you through all this stuff, we have research to show the impact of a patient navigator.

So the first thing is...

Karen Winkfield:

Come to my office. I'm just saying.

Tiffany Avery:

Right. Out of the office of the illustrious Dr. Winkfield. But no, really. Patient navigators are people who work at the hospital, or at the cancer center where you're being seen, who help you navigate, literally all this stuff that we're saying. They will help you to understand who all of these appointments are with, why you're going to see all these different doctors, putting you in contact with the social workers, the financial counselors at your institution.

Most cancer centers will have a patient education center, or something on the grounds. In my experience, it's usually the place you can catch a quiet moment if you need it, because no one's ever in there. And it always strikes me, because usually there are all of these resources right there at the cancer center at the hospital that patients probably don't know is there or taking advantage of.

Zanetta Lamar:

Right. And sometimes in the community, the clinics may be smaller. And so sometimes, the surgeons may be in a different place than the radiation doctors, may be in a different place than the medical oncologists. And so usually, there are still local resources that may not be within one space.

Karen Winkfield:

But doctors, to your point as well, Tiff, so some of the smaller... we know that most of cancer care happens in the community, like 80 percent, not at the big cancer centers where you can have that. So I do want to point out, in addition to Living Beyond Breast Cancer, we just have a few minutes left. I just want to talk about the Sisters Network.

Tiffany Avery:

Oh, I was going to talk about that

Karen Winkfield:

They do wonderful work for African-American women. Check them out, there's all sorts of things. If you are thinking about a clinical trial, please look up the Lazarex Cancer Foundation, because occasionally, they can provide support, transportation support, housing support, if the clinical trial is near you but you're struggling with paying for gas going back and forth, et cetera, that's another resource. Because financially, this can be tough, right? And that's what's important so make sure you're looking up.

Cancer.net is another resource that you can check out. That has a lot of information that's trusted information that you can look at to make sure that you understand your diagnosis.

And then one final one that may help with resourcing in terms of finances, et cetera, is Cancer Services. And it's Cancer Services Online. So please make sure that you think about that.

Please stay away from Google Doc. You know what I mean? Just don't Google anything. We want you to go to trusted sources, and definitely make sure you're talking to your care team. They can provide you some information as well.

Karen Winkfield:

So Dr. Z, any last minute... one or two phrases, make it quick. We've got 2 seconds left.

Zanetta Lamar:

One or two. You have breast cancer, breast cancer does not have you.

Karen Winkfield:

Yes, OK. I love that, Dr. T?

Tiffany Avery:

Well you know, I'm always about community, so I really like the idea of making sure your support is in place. Who's coming with you to be your set of ears and taking notes with you at your appointments, helping you keep straight, and who can you go just to talk to and confide in as you go through this?

Karen Winkfield:

Love that. And you know what? Breast cancer is not a death sentence. OK? Breast cancer is not a death sentence. And you will get through this.

My hope is that this information that we've provided tonight, if you are just starting this journey or if you've been on this journey for a long time, hopefully you learned something today. We really appreciate you tuning in, and again, really want to thank Living Beyond Breast Cancer for doing the amazing work that you're doing and putting on this forum. So thank you so much and you all have a good evening, OK?

Zanetta Lamar:

And on behalf of 3 Black Docs, please listen to our podcast. We have a new podcast that drops every Tuesday. So you can find us at 3 Black Docs on Facebook, Instagram, and our goal, the reason why we started this podcast is because we want to educate our community. We want to end disparities in any way that we can. So thanks for this opportunity and we wish you the best of luck on your journey.