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The Shock of a Metastatic Breast Cancer Diagnosis

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Published on May 29, 2020

Key Takeaways

  • If you feel a range of emotions after a cancer diagnosis, that is okay and completely normal.   
  • Good communication with your doctor, including frequency and openness, is key.
  • Metastatic breast cancer is highly treatable, and patients can have a good quality of life.

Hearing those words "You have cancer" never comes at a good time and it is usually a shock.  Watch as three metastatic breast cancer patient share how they coped with the shock of their diagnosis.

In this first episode of our eight-part Let's Talk: Metastatic Breast Cancer series, host and MBC patient Andrea Hutton talks to fellow metastatic breast cancer patients, Pam Kohl and Lynda Weatherby, along with Lynda's oncologist, Dr. Julie Gralow, from Seattle Cancer Care Alliance. Watch as they discuss how they felt when diagnosed and how they moved forward. Dr. Gralow offers her expert perspective on what she tells patients and about prognosis.

Register for the second episode of this series happening on June 16th: Who Is at Risk for Metastatic Breast Cancer?

This program is sponsored by Seattle Genetics. This organization has no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content. 

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Transcript | The Shock of a Metastatic Breast Cancer Diagnosis

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.

Andrea Hutton:

Hello, I'm Andrea Hutton, and welcome to the first of our eight-part series on Let’s Talk Metastatic Breast Cancer. We are doing a series of live webinars around living with metastatic breast cancer so, between now and December, we'll be talking with patients and experts about diagnosis, prognosis, the latest in treatment options, and just the day-to-day living with breast cancer every day. This series is sponsored by Seattle Genetics, and we thank them for their support. As always, our sponsors have no editorial input or control, and Patient Power is solely responsible for the content.       

We know that hearing those words "you have cancer" never come at a good time, and it is always a complete shock and overwhelming. And I am so pleased to have here with me today two patients who also are living with metastatic breast cancer, Pam Kohl and Lynda Weatherby. Thank you so much for joining us and sharing some of your experience. We also have with us Dr. Julie Gralow, who is a renowned breast cancer oncologist and researcher joining us, and she also happens to be Lynda's doctor. So I’m very pleased to have with us two patients and an expert to share their stories of shock and diagnosis with us today.

We all know that hearing those words "you have cancer" is always a shock, and how we deal with that can be very different. We all deal with it in different ways. So I am very happy to have with me here today, two patients, Lynda Weatherby and Pam Kohl, both of whom are living with metastatic breast cancer. And also Dr. Julie Gralow, who is a renowned oncologist and researcher in Seattle, and also is Lynda's doctor. So I'm very glad that we will be able to have that perspective today as well. So, Lynda, Pam, Julie, thank you for joining me today.

Pam Kohl:

Thank you for having us.

Andrea Hutton:

I, myself was diagnosed with metastatic disease in 2009, and I was diagnosed de novo. So that was my first diagnosis right off the bat. They found it, and it had already spread to the bone, and I was 41. I had no real risk factors. And for me it was the most intimidating and overwhelming experience I've ever had. And I personally could tell from the tech’s reaction, as soon as she saw my mammogram, I could just tell on her face that it was going to be bad news. So I knew like day one, that it was going to be bad.  

And my reaction was to start researching everything. That's just kind of who I am. So I was immediately thrown into the vortex of going online and asking everybody and trying to find out everything I could. But you know, not everybody does that. I didn't, I don't think I burst into tears. I don't think that that was my reaction. I was kind of in like move mode—like I got to take care of this. But not everybody has that experience and that reaction. So, Pam, you had a different experience, especially, you started with early stage disease before finding out later that you had metastatic disease. So can you tell me what it was like for you?

Pam Kohl:

Sure. I mean, I think all of us had the shock for sure. But as I say all the time, I was the poster child for early detection. You know, we know that early detection saves lives, but it doesn't save all lives. And those are things that we are learning more and more about now. But I had stage I estrogen-positive, less than a centimeter of tumor, no lymph node involvement and an oncotype of six. So I was the perfect candidate for a non-recurrence, right? And so I did my lumpectomy. I did my radiation. I did five years of endocrine therapy, religiously. No matter what, the side effects, I stayed on it.           

When I was told that I was cancer-free and that I could go off my endocrine therapy. I knew enough to know that there were rumors out there that maybe we should stay on 10 years. But at that point, the study hadn't been fully published. So I went off and celebrated. Two years later, my normal mammogram that I go to every October, they saw something suspicious. And, of course, "Oh, we don't think it's anything. We think it's scar tissue, but you need the ultrasound." So I went through the ultrasound, the biopsy, recurrence of breast cancer. Everybody said, “How could this happen?” You know, with all of that. A couple of the researchers and Komen scholars that I knew said, “You know, you, you probably should get a PET scan or at least an MRI. And my oncologist said, “No, no, no.”     

So I should have listened to my gut. If there's one lesson, trust yourself. So I had the mastectomy, and then there were some questions about some of the path reports, and they decided they wanted to take it to the big tumor board. And at that point, I found my voice and said, “I want a PET scan.” They kept saying, “No, no, you're just going to get false positives.” Had the PET scan, two things lit up. They said, “Now we have to do a biopsy. We still don't think it's anything. This is why we don't like PET scans.” And they were near my lungs. So I was put to sleep or twilighted. I was in recovery, and I saw the radiation oncologist, and my oncologist walking in the door at 6 o'clock at night together. And I looked at my husband and said, “This is not going to be a good result.”

And as expected, they said, “Stage IV metastatic breast cancer.” And again, all of your blood just drains. And the first thing is, “How am I going to tell my children?” And the second thing is, “What is the prognosis?” And so that was my first question. Okay. I work at Komen. I know what metastatic breast cancer is. I know all of this, what is my prognosis with two lymph nodes that are metastatic? And then you start thinking, “Okay, what's the plan? What's next? How am I going to talk about this?” Mostly with my children.

Andrea Hutton:

Absolutely. When I was diagnosed, I had children to tell as well. They were in high school, and one of the first questions we ask is, “What is this going to mean for my family? How am I going to tell my kids?” Lynda, you as well started early stage 0, right? And with Dr. Gralow at the beginning, and then—what was that like for you this whole process from beginning to now?

Lynda Weatherby:

To boil it down, it was a long, complicated series of events. I kind of call it a metastatic cascade because long before I was diagnosed, there were some signs along the way that I should have paid attention. In my case, I was the stage 0 DCIS in 2001. And Julie was my second opinion at that point. And because I liked her so much, I did all my follow-up care after that initial decision tree of what to do at early stage, I ended up having a bilateral mastectomy. And then I followed with Julie's help I was followed for five years in the oncology clinic and graduated and celebrated and really put it behind me.

When my 6-year-old was graduating from high school. So that was 12 years later. That was when I was diagnosed with MBC, and it was probably a year leading up to that diagnosis that I was having signs, but I did not understand. I should've called Julie's office a lot sooner than I did.

Andrea Hutton:

You know, it's so interesting that you're taking that on, but Dr. Gralow, I mean, that must happen often where patients have something that's bothering them, and they come to you and now looking back, “Oh, I should have known.” But how could patients possibly know? I mean, how do you handle that when someone you saw 10 years ago or 5 years ago now comes back to you with this?

Dr. Gralow:

That's a great question. And it's a struggle regularly because, you know, as we age, and hopefully we all get the privilege of aging, we get aches and pains and other things happen. And so sorting out what might be cancer-related and what's not is hard. And all of our recommendations for follow-up, we've got Pam, a stage I, Lynda, stage 0, meaning it's not even invasive. At least it must've been somewhere, but we didn't see it. You know, all of our recommendations would be not to do blood work, not to do scans, to just listen to symptoms and do a breast exam, in case it comes in the breast. We don't have any proof from trials that doing more intensive follow-up and detecting metastatic disease earlier, prolongs how long you live. And that is tough.       

And then sorting out those symptoms and frequently we say, “Well, let's see if it goes away in a little bit of time.” And then what's the trigger for getting a bone scan or a PET scan? It's something every week that I'm dealing with. And the good news is it's mostly not cancer, but the bad news is it's cancer often enough that it makes us all uncomfortable until we see the results.       

And I've definitely had some patients where we did the scans, and they were negative, and yet it still was cancer. It was just too early to be able to see it. And that's a tough one too. So I think, listening to the patient who knows themselves best, they know the symptoms, they know what's normal and what's not. Not just doing a one-time assessment, but saying, “Okay, if this doesn't go away, we're going to need to investigate it further.” And that's how we have to manage this. And so I would just say good communication and open lines of communication and frequent communication are probably the keys here.

Andrea Hutton:

Lynda, I wonder what it was like for you having that experience going back to Dr. Gralow in that moment. How do you have that conversation with your oncologist that says, “Okay, this is where we are now?” What are you feeling in her office, and what are you getting from her that you hope other patients get from their doctor?

Lynda Weatherby:

Yeah, well, first of all, I want to express how grateful I am for Julie, because I don't know if most patients have this experience or do not have this experience, but I am able to put so much trust in Julie that it takes a load off of me. 

One of the things that I realized pretty early on is I don't need to be the additional doctor here. I don't need to read every scan report to the letter. I don't need to be immersed in the clinical detail, because Julie's got that. And I have found that when I do kind of let those reports seep into my psyche, I'm familiar with it all. I used to work in healthcare, work in a medical center. I'm familiar with it all. But to hear words about me, that you see on the paper really kind of messed with my head.

What Julie gave me and has given me really all the way through, since learning about metastatic disease is kind of that path to follow where she was very, very careful in the beginning. We didn't know in the beginning, I did have brain mets, and, of course, we didn't know what that was going to mean. But she gave me a few milepost markers along the way to say, let's just look this far ahead and let's do this. And then we re-evaluate, and we see how it goes. And that's kind of the approach we've taken all the way through.

I did not ask what my prognosis was. I didn't have to. I mean, I thought about it in the first appointments. Julie has more statistics in her head then many, many, many people. She could have filled me up with statistics, but we didn't go that route. And what we did was talk about what I need to do. And she just gave me very hopeful mileposts, like I said, to say she's had patients along the way who have done this and done extremely well. So let's go do that, because it's indicated, and let's see how it goes.

Andrea Hutton:

Pam, did you, like Lynda said she didn't ask what her prognosis was. Pam, did you ask?

Pam Kohl:

Yes. That was my first question. So yes. And I have surpassed that prognosis. I'm three years out. And I mean, they said it was an average of 24 to 30 months is what they said that night. And I surpassed that, because I'm almost three-and-a-half years out right now, still on my first line of treatment, which is amazing. And I'm grateful for that. But in the meantime, a few months into the treatment, I realized that I was not satisfied with my oncologist. And it took me a while, because he treated me initially. And he's a really nice guy, and I really like him, but we were not a good pair in this particular process. Because he kept saying, “Well, with metastatic disease, we don't do surgery. We don't do radiation. We do systemic therapy.” Okay, I get that. “And we'll, we do palliative care, but we don't really treat,” because, as he said, “It's all out of the barn now. Radiating that one tumor isn't going to save your life and those kinds of things.”

And the final straw for me was after I had called with having trouble breathing a really bad cough, a high fever, and his nurse called me back and said I should go see my general practitioner. That was like, I woke up the next morning and said, “You know what? I know the most brilliant aggressive doctors at Duke and UNC, and that's what I want.” And so it was hard. It was painful to realize that I needed to switch my care, which I did. And from that point on, we are partners in this, and we discussed the options.

And I think the fact that so many of us are living longer because of the new therapies, some oncologists, especially in research centers and cancer centers are being a little more aggressive with, if you only have two mets, maybe we should treat it. So I think there are different philosophies.        

And I think the most important thing for me, as I learn to live with this is—I had lunch with a woman who was battling with a very in cancer for years in remission, come back, took her to lunch and said, “How do you live with this?” This was about six months after I was diagnosed. She gave me the greatest pearls of wisdom. She said, “Well, first I prioritize making memories with my family. And I always buy travel insurance, because I never know when I'm going to be in treatment.” Now I'm not a big traveler, or I don't love to travel, but it was such a metaphor for me about have a plan. But have a plan B, don't stop doing what you're doing, but live in the real world because I do have stage IV metastatic breast cancer, and there is no cure. But I need that plan B.

Andrea Hutton:

Absolutely. I'm wondering, Dr. Gralow, when you're listening to Pam's story with her first oncologist, what your reactions are to, first of all, just the idea when patients do ask you, “Okay, how long have I got, what is this going to be like?” What do you normally say? I mean, I know it probably depends on each individual patient, but what do you want patients to hear in that first appointment?

Dr. Gralow:

I think it's important at some point, and I think most patients know this even before we tell them that the biopsy was positive, but to convey that this is highly treatable in 2020. We have lots of treatments for metastatic breast cancer. And the most likely expectation is not a cure, but that's why we're doing all this research is because someday we hope there will be a cure. And we certainly have plenty of therapies that can cause the tumor to shrink that can prolong your life. That can help you live longer. Even if we're not aiming for a high cure rate, which means you'd be taken off all your therapies, and it would never come back.

So that whole distinction between being highly treatable, but not necessarily expecting a cure, but living as long as possible with as good a quality of life. With respect to, I loved what Pam said, because I frequently say when we start talking about some hard topics, “Let's plan for the worst and then hope for the best.”

So that's kind of like the I'm going to make my travel plans, but I'm going to buy travel insurance. So kind of get things set, make sure you prioritize, get rid of the garbage in your life that's not giving you any self-nurturing. Make some decisions about, “Okay, if I only have a few years left and I don't know how long you have, but if I only have a few years left, what would I really like to do during that time? And what will I be really mad that I wasted my time doing?” And get rid of that.

And then some patients like numbers and some patients don't. And I usually try to get a sense from the patient. I don't just spout out numbers randomly about here are how many years you have, here's the percent chance that this therapy will work. But if a patient asks, I'll say, “Well, here was a study, but understand half the people did better. Half the people did worse.”

There's a lovely essay by an anthropologist who was at Harvard named Stephen J. Gould. And he wrote an essay about his own cancer. It was a mesothelioma of the peritoneum, the abdominal peritoneum, and it's called The Median Isn't the Message. And it's just about this. It's about his own cancer diagnosis, which it's a horrible cancer that he had. And on average, most people died fairly quickly. But he stared at the curve after a while and said, “But not everybody does. And I don't know where I'm going to be on that curve. And I could be one of these people out here at five years and seven years, who's still alive. And nobody in any of the studies can tell who that will be. So I'm going to live my life as if that could be me.” And that's how he lived his life. And then you find out he's writing the essay many, many, many years later.

So, you know, it's everybody processes this in a different way. And initially they're shocked. So we've got to give a little bit of time for just the shock to settle in. But I do think that we do all this research so that we do get new therapies, new drugs, better quality of life out of all of it. And we are making progress. We've had, I think we've had eight drugs for metastatic breast cancer approved in the last two years. Five just in the last year and across all spectrums; one for estrogen receptor-positive, a few for HER2-positive, even one for triple-negative breast cancer, all the subsets. So we are making progress, and these drugs and all of the clinical trials and the research are making a difference.

Pam Kohl:

Yeah. And I think that it's really, I mean, your point about patients are all different as are doctors and the importance of finding a doctor that you can partner with. And I mean, I certainly know lots of patients who don't want the statistics, who just want to be told what to do next. And so finding your own comfort level as a patient, and then finding the doctor who wants to be your partner with you in the way you want it managed makes such a difference in your trust and comfort level and just stress level, I think.

Lynda Weatherby:

Yeah. Can I just say, Andrea, I wanted to—what Julie said about patients who need statistics and patients who would rather not. For me, I kind of put the statistics piece into the, getting the garbage out of your life. I mean, building on what Julie was saying about whether it's good or not. We all have people in our lives that they hear your story and they say, “Oh, my grandmother, Oh my aunt, she died of this,” blah, blah, blah. You really do learn how to ferret out, the negative. And for me, anybody who was kind of giving me that kind of energy, I found my way away from them. And I just need to do that.   

I also need to stay away from the scariest, because this was really big. I mean, I had mets throughout my skeleton and to my brain. I could not take it all in one big chunk. And I've said to other people, other patients that I've met, I just had to break it down into very manageable pieces, or it was going to crush me. And so you just look at what's in front of you right now that you've got to do right now. And like Pam was just saying, hopefully with a wonderful doctor who you can really talk to. And if your doctor is giving you overwhelmingly kind of negative energy, don't be afraid to make a change, because in the best scenario, your doctor will be lifting you up and helping you face what you've got in front of you and help you take the next step that you take after that. So it's really important to have the right clinician by your side.

Dr. Gralow:

I'm going to make a plug for the whole healthcare team though. So, I can't be there a hundred percent of the time, picking up the phone all the time. And so I rely very heavily on my whole team; my nurse practitioner, my nurse, my scheduler, our social workers, our nutrition group. We have an integrative medicine group, physical therapy, our palliative care group. I think, my small team with my nurse, my nurse practitioner and my scheduler, we all work together, and we try to make sure that our patients get prompt responses, that they know how to reach me, even when I'm out of the country. Cause I do love to travel, and I'm not always on the same time zone. So I want to clarify, I am not a hundred percent of the time available, but my team is. So that's key too, is getting a whole team together, both on your personal side. Your friends, your family, who's your support team? And then on your medical side as well.

Andrea Hutton:

I think that we have all benefited from a team approach, whether it's like you're saying in your doctor's office and making those connections with the nurses and also, not being afraid. I had an experience where I was getting treatment, and one nurse was just like—I felt really uncomfortable every time she was the one who was assigned to me on infusion day. And I finally, it was like, well, I guess I'm allowed to say like, “Can I have someone else?” And like Pam had to switch doctors. This is a lot for anyone to handle. And it is okay to ask for a change in your team in some way or another, whether it is a nurse who's treating you, who you're not happy with, or your oncologist is not giving you that kind of information or the kind of treatment that you need.

Everybody needs something different. So I think that's really valuable that you are all doing that. And I know for me having people to talk to who are going through this experience or have been through this experience. I'm almost 11 years out. We are all living with this. And I have to say like today we all have our hair and our makeup, and we look like it's no big deal, but, Lynda and Pam, we know this is a big deal. And you know, this might be a good day for me and Lynda and Pam, but tomorrow might be hard to get out of bed and that's okay too. Like it's not all pretty.

Lynda Weatherby:

Yeah. Can I just maybe add that we have the benefit of kind of knowing each other from advocacy work? And I have found it extremely helpful to find other patients going through this, and they've become very dear friends. I still have all my before MBC friends and before breast cancer friends, I have them all. But there is something different about being with people who totally get this. And it was very lonely before I found advocacy work. And, Andrea, maybe you guys have resources that you can point to on your website, but there are a bunch of metastatic breast cancer groups that help patients connect, and it can be really, really important to not feel so isolated.

Andrea Hutton:

Absolutely, and as I mentioned at the outset, this is the first one in our series of eight parts where we will be tracking and talking about the rest of this. Not just the shock that we're talking about today, but moving forward as well, to treatment options and the experiences of living with the disease and support networks and how you advocate for yourself and what kind of resources are available. So, moving forward, we are hoping that our audience will come back to us every month. I want to thank all of you for joining us today. Lynda, Pam, Dr. Gralow, thank you so much for your insights and for joining us to talk about the beginning of this metastatic journey and where we go from here.

Pam Kohl:

Thank you.

Lynda Weatherby:

Thank you so much, Andrea.

Andrea Hutton:

So you can all join us next month on June 16th, where you'll see Pam again and her oncologist, Dr. Jeremy Force from Duke Health. And they'll be talking more about the risk factors of metastatic breast cancer, kind of trying to answer the “Why me, how did this happen?” and more. And remember, you can send in any questions in advance to breast@patientpower.info. And you can also send in a little video of yourselves answering the question how you feel living with metastatic breast cancer and the shock that you found when it happened to you. So thank you again, everyone, for joining us and remember, knowledge can be the best medicine of 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.

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