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Running Through Life One Race at a Time: Rebecca's Breast Cancer Story

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Published on December 12, 2016

Is it important to get genetically tested if you have breast cancer?  What if breast or prostate cancer runs in your family?  Patient Power founder, Andrew Schorr, interviews BRCA-positive breast cancer survivor, Rebecca Seago-Coyle.  Rebecca is a project manager and decided to take her management skills and apply them to her diagnosis.  Today, as a survivor and athlete, she chooses to reach out to other patients and help them advocate for themselves and learn how to manage their own disease.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power. I’m Andrew Schorr. We’re joined now by Rebecca Seago-Coyle who’s in Seattle. Rebecca, thank you for being with us.

Rebecca Seago-Coyle:

Yeah, thank you for having me.

Andrew Schorr:

So, Rebecca, we wanted to thank you first of all for hosting programs for Patient Power in your area of key interest, breast cancer. So at age 35, I think you’re 39 now, if I’ve got it right, and you’re a marathoner.

Rebecca Seago-Coyle:

41.

Andrew Schorr:

Oh, you’re 41, oh my God, has it been. But going back to when you were 35, your life kind of changed. There was a big intervention. What was that?

Rebecca Seago-Coyle:

For sure. I was on the track to be healthy, and right in the middle of a goal that I had I found out that I had breast cancer. So I had to put my goals on hold for a little bit and re-assess and deal with the diagnosis. 

Andrew Schorr:

Okay, now we should say that the breast cancer that you were diagnosed with was a BRCA-positive breast cancer, where there would be a hereditary connection. Were you aware of breast cancer or maybe even related ovarian cancer in your family?

Rebecca Seago-Coyle:

No. I knew that several members of my family had breast cancer, but no one had ever been genetically tested. And my father actually passed away from prostate cancer, which we found out is linked to the gene as well.

Andrew Schorr:

Well, you start though being told you have breast cancer, and you don’t know anything about genes. How did this happen? You had a lump, you had a mammogram. How did it unfold?

Rebecca Seago-Coyle:

It actually started to unfold a year before when I was 34. I found a lump in my breast. During my annual exam, I mentioned it to my doctor. And she just told me that women my age get lumps all the time and not to worry about it. So I trusted her, and I waited. And I waited a year, and the lump I noticed was getting bigger. So I decided to find a new doctor to get a different opinion. And when I did the doctor again said, I don’t think there’s anything to worry about, but let’s just go through the motions. And so at each level of going through the biopsy, the mammogram, the ultrasound, everyone thought this is not cancer. But it wasn’t until we got the results of the biopsy that they confirmed that yes, it actually was cancer.

Andrew Schorr:

Okay. But at what point did you learn that this was a cancer gene, if you will, and that maybe you needed to do things about it, which you eventually did—have your breasts removed and your ovaries?

Rebecca Seago-Coyle:

I did. Actually, I came up to Seattle and was treated here. At the time, I was living in Olympia. So I came to Seattle and again shared my family history with the doctors here. And they thought there could be a genetic connection. But in the time it would take to get the genetic testing we decided that I was already going to do a bilateral mastectomy. So we did the testing, then the mastectomy. And while i was healing from that surgery, we were trying to determine if I was going to have chemo or not, and when we got the results back for genetic that I was BRCA-positive. Then that’s when we decided that I would need chemo.

Andrew Schorr:

And then subsequently you deternined that you’d have your ovaries removed as well?

Rebecca Seago-Coyle:

Yes, by the end of treatment and reconstruction surgery, I just decided to go ahead and have my ovaries taken out as well, as a preventative measure.

Andrew Schorr:

So how are you doing today? This started at 35, now you’re 41. How are you doing?

Rebecca Seago-Coyle:

I’m doing great. You know I’ll say that menopause at 35 isn’t fun, but there’s lots of good things that help you. The big thing that I’ve been able to do is I’ve continued to run the whole time even through chemo and through surgeries I’ve continued running. And that a huge benefit to being diagnosed with something and then continuing to exercise. The exercise helped a lot of things tremendously, a lot of the side effects.

Andrew Schorr:

Now another thing that’s helped you I think is being a patient advocate. So you’ve connected with other women, younger women, older women. But this whole hereditary connection to breast and ovarian cancer is scary to people, and of course having your breasts removed and your ovaries removed. That’s a major deal. That connection, what has it meant for you? Why do you do it, and how satisfying has it been?

Rebecca Seago-Coyle:

It actually is really satisfying. I hate to say that sometimes, because I feel that I get satisfaction from helping from someone else. But I think it’s just that i remember that day. I can tell you June 4th at 1:04 PM. I remember the exact day and time that they called me. And I just remember being so afraid about what was going to happen. And I don’t wish that on anyone. So I try to help other women by being there for them, so they aren’t so afraid.

Andrew Schorr:

Now there’s research going on related to alternatives in treatment to help people avoid being disfigured in a way. You had reconstruction and having your ovaries removed, which is a big decision for a woman as young as you were. Are you hopeful that maybe research can help?

Rebecca Seago-Coyle:

Absolutely. I think where we are now, technology has helped us. We’ve come a long way. My cousin was diagnosed in 2001. And even from now in the last 15 years, we’ve come a long way. We’re making progress in the research we’re doing, and I believe that’s really going to help us find a cure and help other women.

Andrew Schorr:

So as far as your daily activities now you’re running. I believe you work in the IT field, don’t you?

Rebecca Seago-Coyle:

I do.

Andrew Schorr:

So what’s your outlook on life now? Besides your commitment to other women, but as far as your health, do you feel you can put this behind you? And you’ve had the surgeries, and you can go on, all the chemo, how do you feel about the future?

Rebecca Seago-Coyle:

I feel really good about the future. I feel like I’m doing everything I need to do to stay healthy and just balance everything. I do work full-time, and I do a lot of patient advocacy work in my free time. And I also exercise in my free time, and it’s just about balancing it all. And I do feel really positive about the future.

Andrew Schorr:

Now you’ve met other women who’ve had to go through surgery. Maybe they never expected it. I know your plan was not to have children, but some other women your age want to have children. And then this hits them, they’re told well, maybe you should have your ovaries removed, your breasts removed, etcetera. And maybe you’re going to get blasted with chemo as well. What do you say to people to a woman who has to make these hard decisions? How do you counsel people?

Rebecca Seago-Coyle:

I really tell them to talk to their doctor a little bit more, make sure that your doctor understands what your goals are not only for now but in the future so that you can together make that decision on what’s going to be best for you.

Andrew Schorr:

Now there are some groups that may be, ethnic groups, where some of these hereditary predispositions may be higher, if you will. So what about people getting tested, or where do we stand with that now as far as whether it’s African-American women or Ashkenazi Jewish women as far to know what they’re dealing with?

Rebecca Seago-Coyle:

I think regardless of ethnic background I think it’s just really important to know your family history and to talk about it. To be honest with you, in my family we don’t really talk about illness even though there seems to be a little more than other families and just advocate for yourself. I think it’s very important to know what you could be at risk for.

Andrew Schorr:

So it sounds like communication is they key, communication in a family and communication with your healthcare team as to what your situation is and what your options are. You work on that very hard. How’s your communication with your healthcare team now? You have doctors I know at the Seattle Cancer Care Alliance where you chose to go. It sounded like once you figured out what was going on, you worked together as a team.

Rebecca Seago-Coyle:

Exactly. I’m a project manager, and I ran my own cancer like a project. And I realized that my team of doctors were really my subject matter experts, and I realized that this is my project. I’m going to have to live with these decisions, and they can guide me on that on the decisions to make, but ultimately it’s my decision.

Andrew Schorr:

Rebecca, I always wanted to ask you about what do you think about women being tested? What are your thoughts about that now?

Rebecca Seago-Coyle:

Interestingly enough, thanks for asking, I saw a researcher speak just last night on the importance of genetic testing. And one of the recommendations was to be tested, have every woman tested as part of their wellness exam for genetic mutations, for instance for breast cancer or ovarian cancer. She indicated that if we know this ahead of time when a woman is early, then it’s actually providing us an opportunity to fix the problem before it’s too late.

Andrew Schorr:

So, what do you think about women having this knowledge, ‘cause it’s a good question about what to do about it, right?

Rebecca Seago-Coyle:

Like you said earlier, knowledge is power, but having that knowledge can also be extremely scary. So if you find out that you’ve been diagnosed with a genetic mutation, like BRCA1 or BRCA2, understanding what the risks are and the opportunities to actually deal with it. Having that knowledge early, you have a little bit more opportunity to fix the problem than when after you’ve already been diagnosed.

Andrew Schorr:

And we should mention that there’s a lot of research going on in clinical trials. And, of course, for some people there have been surgical options as well. But I guess the bottom line is by connecting to people like you, you’re not alone.

Rebecca Seago-Coyle:

Exactly. That’s definitely true. There are a lot of out there that are survivors and who’ve been through cancer and are always here to share what we’ve been through and to help others.

Andrew Schorr:

We mentioned along the way you are a runner, a marathoner, right? 

Rebecca Seago-Coyle:

Yes.

Andrew Schorr:

Okay, so what’s your goal? Now with good health, what’s your goal? Are you going to run, win the Boston Marathon? What’s your goal?

Rebecca Seago-Coyle:

I’m not a fast runner. So if I ever run Boston, it will probably have to be a fundraiser. My goal is actually I want to do a marathon every year, at least one marathon. And then I also try to do at least three of four half-marathons a year.

Andrew Schorr:

Wow. Okay. Well, our wish for you, Rebecca Seago-Coyle, is to run marathons until you’re 100. And maybe you’ll be healthy enough to do that and thank you for your patient advocacy. Thank you for working with Patient Power. I think this is an important message that people talk about it in their families, that your family didn’t, get the right diagnostic tests to know what you’re dealing with, and get the right healthcare team and communicate with them. All good points Thank you for being with us today.

Rebecca Seago-Coyle:

Thank you.

Andrew Schorr:

Well, I’m Andrew Schorr with Rebecca Seago-Coyle. And we both remind you that knowledge can be the best medicine fo all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.