Hope After a Triple-Negative Breast Cancer Diagnosis
October 23, 2014

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In this Breastcancer.org podcast, Pat Prijatel talks about triple-negative breast cancer and what makes it different from other types of breast cancer. Pat Prijatel writes the blog Positives About Negative and is the author of Surviving Triple Negative Breast Cancer. She has been a magazine writer, editor, consultant, and professor for more than 35 years. She headed Drake University's magazine sequence for 22 years before taking over as director of the School of Journalism and Mass Communication in 2004. In May 2006, Pat was diagnosed with early-stage triple-negative breast cancer. She retired from Drake in 2007 to focus on health writing and her health. She had surgery, chemotherapy, and radiation, and is now healthy, fit, and cancer-free.

Listen to the podcast to hear Pat talk about:

  • what the idea of triple-negative disease meant to her when she was diagnosed
  • when and why she started her blog
  • what researchers have learned recently about triple-negative disease
  • advice she would give to a woman newly diagnosed with triple-negative breast cancer

Running time: 22:57

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Show Full Transcript

Jamie DePolo: Hello everybody, welcome to the Breastcancer.org podcast. My name is Jamie DePolo and I’m the senior editor of Breastcancer.org, and I’m very excited today. My guest is Pat Prijatel, and she writes the blog Positives about Negative, and is the author of Surviving Triple Negative Breast Cancer. The paperback version of that book is coming out this month so it’s a little bit less expensive if you’re looking to buy it. She has been a magazine writer, editor, consultant, and professor for more than 35 years. Pat headed Drake University’s magazine sequence for 22 years before taking over as director of the School of Journalism in Mass Communication in 2004. In May 2006, Pat was diagnosed with early-stage triple-negative breast cancer. She retired from Drake in 2007 to focus on health writing and her health. She had surgery, chemotherapy, and radiation and is now healthy, fit, and cancer-free. Pat, welcome to the podcast, we’re delighted to have you as a guest.

Patricia Prijatel: Thank you, Jamie, I’m delighted to be here.

Jamie DePolo: And Pat, also, I should mention, Pat also blogs for Breastcancer.org. We’re very fortunate to have her writing for us, and we also sometimes reprint some of the blogs from her blog, which is Positives about Negative. So, I guess I want to start with your diagnosis. When you were diagnosed, Pat, did the idea of triple-negative cancer mean anything to you, and was it all kind of overwhelming, and how did you go about finding out what that meant?

Patricia Prijatel: Well, it meant absolutely nothing, and you’re right, it was absolutely overwhelming. The term “triple-negative breast cancer” wasn’t used in the medical literature until 2005, and I was diagnosed in 2006. So my doctors never used the term triple-negative with me, they just talked about me being negative for estrogen and the human growth receptor factor. So you can imagine getting a breast cancer diagnosis and being told you’re negative for this human growth receptor factor and you’re thinking, “What? I’ve never heard of that.”

Jamie DePolo: It doesn’t mean anything.

Patricia Prijatel: Does not mean anything. So, all my docs said was that it was aggressive, that I have an aggressive form of breast cancer, which, you get breast cancer, you’re frightened enough, and then they tell you it’s aggressive. So, one doctor said it’s a young woman’s disease, and I was 60 at the time and I thought, “Hey, you know, young is good. I’m fine with that,” but I learned in this case it was not. So there wasn’t much out there for me to find, and I started with breast cancer websites and ultimately did find Breastcancer.org that way. Then I went, actually, to journals. I went to the source. My background as a professor and a journalist really helped me because what those two things have in common is research. So I really know how to go to the source, how to find information, and being a professor, I knew how to read scholarly papers. So I didn’t get too lost in the numbers and the jargon. I did need to educate myself on medical terms, but I’ve actually found that that’s not unusual for breast cancer patients. So, there was an awful lot to learn, a pretty high learning curve in a pretty short amount of time.

Jamie DePolo: I’m sure. And given your background in journalism, did you contact any of the researchers or did you follow up with some of the more interesting studies in that way or did that come later?

Patricia Prijatel: It sort of came later because at the beginning I was just sort of intimidated by everything. And I’m really not a person who gets intimidated easily, but it just seemed that everything… that I didn’t understand enough to talk to anybody about it. And ultimately, yes, I did contact people, that was a real benefit, but I think that ended up being a benefit for other people more than for me at the time.

Jamie DePolo: Sure. Now, in your mind, what makes triple-negative disease different than other types of breast cancer?

Patricia Prijatel: Well, triple-negative is defined by what it isn’t. I work a little bit with a breast cancer group in the Netherlands, and one of the ways that they call the disease is “three times nothing.” And because it’s defined by being negative for the receptor for estrogen, receptor for progesterone, and then that human growth hormone, so we don’t know what makes it tick. And that means we don’t have targeted drugs for it because frankly, we don’t have a target.

So the existing drugs that really are successful against breast cancer, like tamoxifen and Arimidex, those that go after estrogen, or Herceptin that goes after HER2, they don’t work for it. I also found that it’s more likely to affect young women and African American women, but it’s clearly an equal opportunity disease because I’m white and I got over being young some time ago. I found out that it can be aggressive, but it is not always so. And one of the wonderful things I found and I keep finding is how unique breast cancer as a whole is to individuals; it’s as unique as our DNA. And that triple-negative can be aggressive in that first 3 years. So whereas, for most kinds of breast cancer you really look at the 5-year mark to see if you’re safe, with triple-negative, after 3 years, the chance of it recurring really drops off significantly, so you have a smaller window really to worry about.

Jamie DePolo: Okay. And how, or I guess let me ask you this, when and why did you start your blog? And I’m wondering, which came first, the book or the blog?

Patricia Prijatel: The blog came first. I started in December 2007, which was only 6 months after my diagnosis. [Editor’s Note: Pat started the blog a year and a half after her diagnosis.] And you know, cancer does weird things with your sense of timing. It seemed to me that that was so long, that I should have done it a year before, and, you know, had I done it a year before, I would have been better off because then I would have known what the disease was when I was diagnosed with it. But I started it because I had all of this information, I did all of this research, and I figured, “I’m learning this, I’m through with my treatment now, and I’m planning to be fine. But I really should send this information to other people.” And blogging is really fairly easy so I just decided to start it and share what I had. And also because there were so many frightening words out there, because I knew other people were told that their cancer was aggressive. And TNBC can be aggressive, but it is not always so. And so, I thought there was a real need for education here. And that’s what I’ve spent my life doing, so I decided to educate in a different way.

Jamie DePolo: Okay, and was the book kind of an outgrowth of the blog or was that something completely separate?

Patricia Prijatel: The book came sort of as an outgrowth of the blog, but I wasn’t able to just say, “Okay, I have this blog post and this becomes chapter two.” I mean, it all became a whole lot more extensive and more refined. And what I did in the book that I haven’t done on the blog is I interviewed 11 women who traveled the TNBC road and came out fine, wonderful women and they were delightful to talk to. So I think that makes the book different, but I also went more in depth than I do in my blog.

Jamie DePolo: Okay. Now, with all the research that you’ve done, the way you’re sharing your information, you’re an outstanding resource for women who’ve been diagnosed with triple-negative disease -- I guess I would argue for anyone who’s been diagnosed with breast cancer, because you have so much information -- but what is the most common question, or questions if there are a couple, that you get asked?

Patricia Prijatel: Thank you. Thank you for your comments on the blog. The most common search question that comes up is, “Can I survive TNBC?” Women really, honestly don’t think they can survive. So, that becomes an awful lot of what I talk about. I also get asked an awful lot about supplements and about diet and about those kinds of things. Mainly specific things like, you know, essiac tea or (if that’s even how you pronounce it) turmeric, you know, specific things. And my approach to that always is, eat an overall healthy diet. There’s plenty of wonderful research out there that shows that five servings of fruit and vegetables a day really help reduce your risk of triple negative, but also exercise. Exercise is just vitally important. I remember early on talking to one researcher who said what their research found was that 3.8 hours a day -- a day, I mean a week --was what --

Jamie DePolo: That’s a lot!

Patricia Prijatel: That is quite a lot, I mean, you have to quit your job and just walk! Anyway, 3.8 hours a week, and so I always have that in my mind, that that’s what I have to aspire to. But just overall healthy, keep your weight down, look at the weight charts, make sure your weight is in the normal category, all of these things are really important to your well-being and to your ability to reduce the risk of triple-negative, other kinds of breast cancer, and other kinds of disease. Heart disease, diabetes, just a whole host of diseases. So, the blog post that has the most hits is my triple-negative breast cancer diet, and there I give specific things on which I do. And I go a little overboard, and, you know, I have a green drink first thing in the morning, I have my five servings a day, we have fresh juice at night, I do my 3.8 hours of walking, I do yoga, you know, I’m sort of a bit of a health nut right now, but…

Jamie DePolo: Well, understandably so.

Patricia Prijatel: Well, I’m 8 years past diagnosis, so something worked.

Jamie DePolo: And I want to go back to the first question about, you said a lot of women ask about surviving triple-negative breast cancer. Do you think that’s just because it’s often characterized as being more aggressive and so women are more frightened of it?

Patricia Prijatel: That is just one of my biggest frustrations, is that so often when a news release comes out about something wonderful about triple-negative that they’ve found, some gene that they can target, some drug, existing drug, new drug that works for it, often this is framed as, “This is important because this is an especially deadly, lethal, highly aggressive form of breast cancer.” So it’s framed as this is very important because this is a really scary kind of breast cancer. And I can see why researchers do that, because they say, “Pay attention to this because this disease is important to fight.” But women read these things. I think researchers don’t realize that women are often going back to the source and actually reading these research articles. And so when they say this, it’s frightening. And you know, this is not a lethal disease. Lethal means it is going to kill you. And it is not going to kill you. The majority of women with non-metastatic triple-negative breast cancer do survive. I mean, the great majority of them. And with metastatic, a lot of the research that we’re seeing coming up now is focused on metastatic.

Jamie DePolo: In fact, there was just an article that came out not too long ago, a couple European cancer groups were calling for more research on metastatic because there just wasn’t enough being done. So, that kind of leapfrogs into my next question: what is new on research for triple-negative disease? Have researchers learned more about the disease? And what treatments may be most effective, or are there things that can be targeted yet?

Patricia Prijatel: There’s fascinating things. There’s things, the Human Genome Project, which I wouldn’t have believed 8 years ago, I would be talking to you about the Human Genome Project, but it’s fascinating to me. And what they’re doing is mapping our genes, mapping our genetic makeup, and they’re doing this with triple-negative, so they can find what actually is causing it. Which means that once they find what sort of genes have gone askew, they can then target those. So they found things like that triple-negative breast cancer, the basal form of it, many types of triple-negative are basal form.

Jamie DePolo: And what does that mean, just in case someone is listening and doesn’t know?

Patricia Prijatel: It’s formed in the basal layer of the breast, it’s just a type, where’s it’s formed.

Jamie DePolo: Okay.

Patricia Prijatel: And most of them that are basal form are really much more similar to ovarian cancer than they are to other forms of breast cancer.

Jamie DePolo: Interesting.

Patricia Prijatel: It’s really pretty fascinating. There’s also research that prostate drugs, drugs that successfully fight prostate cancer can be used as targeted drugs for triple-negative.

Jamie DePolo: And are those targeted for prostate or are those chemotherapies, or what type of drugs are we talking about there?

Patricia Prijatel: They’re chemo drugs, chemotherapy drugs, but they’re chemo drugs that are specifically targeted for prostate cancer, for the prostate.

Jamie DePolo: Okay. I got you.

Patricia Prijatel: And if you go back to the ovarian cancer, some of the drugs that are used for ovarian cancer are a little less toxic than the ones that are used for breast cancer. So if we can find these things out… I mean, even simple things like when you’re diagnosed, if you start taking an osteoporosis drug, this can reduce your risk of all kinds of breast cancers including triple-negative. So there’s fascinating things that are coming out, and as I said, a lot of this is dealing with or focusing on metastatic, because as you said, this is where the need is. Because chemotherapy, existing chemo, works well on most cases of triple-negative, most cases of non-metastatic triple-negative respond well to existing chemo drugs. In fact, they respond better then hormone-positive breast cancer does to the existing chemo drugs.

Jamie DePolo: Interesting.

Patricia Prijatel: But metastatic really is where we need that targeted drug, and so that’s where we need more emphasis. And I’m really seeing some hope there because it’s, metastatic disease of any kind is serious business.

Jamie DePolo: Oh yes, definitely. And I’m assuming, now, I know you go to a lot of conferences and then do blog posts on the research that you see there. Are you going to San Antonio this December?

Patricia Prijatel: I usually go, and quite frankly, I can’t believe that it’s October. So, I got the materials for that a couple of days ago, rooms are filling up, and I’m thinking, “But it’s the middle of summer.” So I have to get my schedule together, and I’m assuming I will go.

Jamie DePolo: No, that’s great, and I ask, and I’ll just toss it out there to you now, because I believe I am going, too, so it would be great to connect with you down there. And maybe we could record a podcast and talk to you about some of the triple-negative research that’s presented down there. That would be great.

Patricia Prijatel: That would be fabulous.

Jamie DePolo: Yeah. I’m also wondering, because you are so knowledgeable, what one piece of advice would you give to someone who’s just been diagnosed with triple-negative breast cancer? Or, I guess, however you want to answer it -- someone who has just been diagnosed with any kind of breast cancer?

Patricia Prijatel: I would say live your life. You know, when you get cancer of any sort, breast cancer, any other kind of cancer, we are so terrified of the word “cancer” that we focus on the wrong thing. We focus on death. And we should just in general be focusing on life. One of the things, if you want to call it a gift -- I don’t call it a gift because I would have rather learned it otherwise -- but one of the things you learn from a diagnosis like this is that life really is awfully precious and that all anybody has is this moment right now. So live it, you know, hug your kids, enjoy the gorgeous day, don’t get so focused on your work that it overwhelms you. You know, look at what’s important and live. Just live your life. And you only asked me for one thing, but I would say a second, and that is that the great majority of women with non-metastatic triple-negative breast cancer do beat it, and so there is hope.

Jamie DePolo: Okay, that’s excellent advice, and I would, I’m going to ask you one last question that we didn’t talk about ahead of time. There was some suggestion by some researchers that some forms of breast cancer be reclassified so the word cancer wasn’t in the name, because as you said it is so scary. And I’m just curious, what’s your opinion on that? Do you think that’s a good idea, or have you thought about that?

Patricia Prijatel: I have thought about that, and it’s one of those things I come firmly down on both sides. I agree that there’s been a lot of people overreact to ductal cancer, ductal carcinoma in situ, which means that it’s cancer but it has not gone anywhere. And in most cases you can watch this cancer and not do anything with it until it shows sign of spreading. But on the other side, knowing what I know about triple-negative, I know that it can be aggressive and it often hits people who aren’t supposed to get breast cancer -- that is, premenopausal women.

So I think we’ve got to be vigilant, but I think there’s many ways of being vigilant. You know, I think the statistics, I know the statistics show that in the early 2000s the rate of breast cancer went down, and now they’ve sort of equalized in terms of incidence, but the rate of mortality has really done down. And deaths from breast cancer have gone down fairly significantly. So I think that that is something that might come from many of the cancers that are diagnosed are those cancers that are really not going to go anywhere. And you’re worried about those, I think, maybe unnecessarily. But by the same token, that’s cancer. So it’s very, very difficult to give a clear answer.

Jamie DePolo: Okay, and that’s very fair, because that’s kind of where I fall on it. It’s kind of like, well, I can understand what the researchers are saying, but on the other hand it is cancer so you need to kind of -- and I know if it were me, I’d want to do something about it. I know many research shows you can be vigilant and just watch it, but that, I don’t know, everyone is different, and everyone makes treatment decisions based on their personal beliefs and what’s right for them and everybody’s different. So I know I would certainly want to do something about it.

Patricia Prijatel: Absolutely, and I think that there can be a lot of information, and I think it’s part of the way that a doctor deals with this and part of the way a woman deals with it. I think if you’ve got a lot of risk factors, then you might want to have some significant reaction to this. I think there’ve been studies that have shown women who have DCIS have double mastectomies even though they don’t have the risk factors. And that, I think, is where the danger lies, that some of these treatments might be more dangerous for them than the cancer itself. But it’s hard to tell.

Jamie DePolo: Right, and as you said everyone is different and everyone makes personal choices. Well, Pat, thank you so much for joining us today. I do hope we can connect in San Antonio because I would love to hear your take on the research that’s presented there, and I think I can speak for everyone at Breastcancer.org, thank you for blogging for us, too, we most appreciate it.

Patricia Prijatel: Well, thank you, Jamie, it would be delightful to see you as well, and I enjoyed this visit. And I enjoy, I really love my connection with Breastcancer.org, I think it’s a marvelous group, and I recommend it to everybody.

Jamie DePolo: Oh, thank you so much. Thanks everyone for tuning in. This has been a podcast with Pat Prijatel, we’ve been talking about triple-negative breast cancer, and we will be back next month with a new podcast.

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