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What Does De Novo Mean in Metastatic Breast Cancer?

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Published on June 22, 2020

Some women with metastatic breast cancer are initially diagnosed "de novo". What does that mean, why does this happen and are there increased risks involved?
 
In this segment from the second episode of our eight-part Let's Talk: Metastatic Breast Cancer series, host and MBC advocate Pam Kohl gets these questions answered by her own oncologist, Dr. Jeremy Force of Duke Cancer Institute. They also discuss the long-term data from the Oxford Study on reoccurrence.

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

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Transcript | What Does De Novo Mean in Metastatic Breast Cancer?

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.

Pam Kohl:

Hi, I'm Pam Kohl. And welcome to episode two in our Let's Talk About Metastatic Breast Cancer series. I first of all, want to thank our generous sponsor, Seattle Genetics for their support of this series. And as always throughout the series, Patient Power does maintain all editorial control.

So, I'm here today, I'm delighted to be here today with Dr. Jeremy Force, who is my doctor. It's great to see you when I'm dressed and in my own home, and not in a hospital gown. So Dr. Force is with Duke Cancer Institute and he's been my oncologist, I guess, for the last two and a half years. And we have a great partnership. So welcome, Dr. Force.

Dr. Force:

Thank you so much for having me. I'm very excited to be involved in this and participate in this really unique and innovative platform to spread the word across the nation, and hopefully beyond that, about metastatic breast cancer. And I look forward to this conversation.

Pam Kohl:

Me too. So let's just dive right in. Some people get diagnosed; their initial diagnosis is metastatic. And it's called de novo. Can you explain what that is? And the question is, are you more at risk of sooner death when you're de novo?

Dr. Force:

Sure. It's an excellent question. And definitely an elusive topic for many people, physicians included. Many of the more aggressive breast cancers present in a de novo fashion. So de novo just means not early stage. It means it wasn't caught early. And so you can imagine somebody who has a more aggressive form of cancer, it might present in that de novo fashion where it just shows up and it has spread to somewhere other than the local regional area. And the unique factor about breast cancer is that the lymph nodes in the armpit and the breast are kind of considered one. Not one organ, but that's how the staging system is created. Whereas, many other cancers, if it spreads to the lymph nodes, it might be considered truly metastatic disease and not curable.

In women who have breast cancer that's in the breast and then the lymph nodes, it can still be cured quite often, actually. But back to the de novo concept. If it spread to a distance site, liver, bones, et cetera, then you can imagine someone who has just a more aggressive cancer, it can spread faster to those areas, and/or someone who didn't have access to care. And they had something that was in the lymph, and it just was sort of neglected because they didn't have the resources or the medical access to even get the care that was needed. And we actually see more of that than we see more of the aggressive cancers. And that's why - it's a true shame when we see that. Because if we could just get many of the people in rural or lower socioeconomic places to access the care, I think we would see tremendous increases in breast cancer cure.

Pam Kohl:

Wow. It's something that we all need to take to heart and how we can... Especially, we're sitting here in North Carolina and there are so many counties that struggle with access.

We now know that anyone who has been diagnosed with breast cancer is still at risk of recurrence and metastatic disease. And there's some conversation that it's a 30% risk. So can you talk a little bit about that it's no longer just because you've hit five years, you're home free?

Dr. Force:

Yeah, of course. So the best way to answer that is... Yes, it can be upwards of 30% risk. But it's a little bit more complex than that. From 2017... So that the Oxford Group, they put out these huge meta-analysis. They sometimes look at 60 studies. So I mean, 50,000, 60,000 women are grouped together in these large meta-analysis that do provide very provocative, and where is the current care, or has the current care developed to improve and reduce the risks of recurrence? So this one group in particular, first author was [inaudible]. They reported out in 2017 where they were looking at 20 years of essentially follow-up. Where a woman was post-menopausal, took their endocrine therapy for five years, and then they followed them for an additional 15.

Pam Kohl:

Right.

Dr. Force:

And it was really humbling and really frustrating to read that study, to be honest with you. Because what we learned was is that the curve just keeps on going up. There's no plateau. It doesn't even look like it's rounding out. And from a cancer researcher perspective, it makes me first say, "We need to work harder." We need to think harder, think faster, because cancer isn't going to sleep. And so we need to get into the lab. We need to do work to figure out what the heck is going on and why we're seeing such either late recurrences, or we're seeing that those recurrences just aren't going down. Now, to your point about after five years, tamoxifen (Nolvadex) does appear to have sort of a tail effect, where it does work for longer. The aromatase inhibitors, maybe not so much. But we do know that that risk of developing metastatic breast cancer, and again, for reasons that were not clear… so one of the most common places that cancer will go is to the bone, breast cancer will go to the bones.

And there is a body of literature looking at tumor dormancy and trying to understand what is it about the bone marrow and that niche that allows for those cells to essentially remain undetected, 10, 15 years later, all of a sudden sprout? And we do believe there may be some things, I'm not going to go into the details of the science, but we do believe there's some, essentially arms that will sort of maybe hug the cancer cell and make sure that it's protected from chemotherapy, from endocrine therapy. And then somehow the cancer just mutates and starts to grow. And so we're looking into that from a research perspective, but we don't know why.

Pam Kohl:

That's great. We're getting close to the end. And one of the things I've certainly learned in my whole experience and knowing so many other people like me is that breast cancer is smart, and determined, and doesn't like to give up. And we shouldn’t either. And we're so grateful to have people like you, who are clinicians and researchers, who are working on this. Do you have one final closing thought that you can close with, that will give us some hope?

Dr. Force:

Yeah. It's just that. There's lots of hope. There's lots of hope on the horizon for metastatic breast cancer, early stage breast cancer. And we are working hard to conquer this disease on behalf of you, Pam, on behalf of every person out there. And we are steadfast to trying to find a cure for this disease. Find better biomarkers, who's at risk for developing metastatic disease, and trying to find the things that will cure this and, or bringing the access of care to the patients who lack it. So that way we can catch the disease earlier. But there's lots of hope. And I hope people on this call recognize that we're all in this together. We're a team and we're out there to try to help.

Pam Kohl:

Thank you so much for spending your time this afternoon, doing this. I know personally that working with you gives me hope every time we talk. Because I know that you're working hard to find treatments and cures. And more importantly, the fact that you're seeing patients every day really matters as well. So I want to, again, thank you Dr. Force. And I want to kind of end with a call to action. We've talked about how most of us finish our treatment, and we're told we're cancer free and it's behind us. And because of the study you talked about, and what we've been talking about, we now know that that's not true. And so understand that all of us are at risk of recurrence and for becoming metastatic. Some of us have more risk than others. I'm not saying that everyone's going to... Most of us are not going to become metastatic or have a recurrence.

So I think I want to end with just saying, make sure you ask your doctor, you talk to your doctor. And the most important thing, if you've ever had breast cancer and you have a new pain, or you have something going on that in your gut just doesn't feel right, and it lasts for two weeks, and you don't understand why it's happening, call your doctor. Do not dismiss yourself, because who knows what's there. And most of the time you're going to find that it's nothing, but you should never ever dismiss anything that you feel in your gut, call your doctor and ask them to be seen. We're grateful for you being here, Dr. Force, and all the work that you're doing.

And I hope that all of you have gotten a lot of great information and that when you click off the computer, you'll feel a sense of hope if you are living with metastatic disease. And you will understand that if you have had breast cancer, that you need to stay strong and be aware of your body. Thanks so much for watching. And I'm Pam Kohl. And just remember to stay vigilant.

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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Resources

  • Links about the Oxford Study here and here
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