May 19, 2025
Dr. Chino talks with Dr. Erin Roesch and patient advocate Julia Maues about pregnancy associated cancer with a focus on breast cancer, the most common cancer diagnosed during pregnancy. This discussion is based off an JCO OP review article published in late 2024 called “Multidisciplinary Management of Pregnancy-Associated Breast Cancer.”
Dr. Fumiko Chino:
Hello and welcome to Put Into Practice, the podcast
for the JCO Oncology
Practice. I'm Dr. Fumiko Chino, an assistant professor in
radiation oncology at MD Anderson Cancer Center with a research
focus on access, affordability, and equity.
The incidence of early-onset cancer—new cancers in adults under the age of 50—is rising by 1% to 2% annually. Young women appear to be at particular risk, with cancer incident rates over 80% higher than similarly aged male counterparts. Collectively, that means that more patients are being diagnosed with cancer during their childbearing years. Pregnancy-associated cancer occurs in 1 in every 1,000 to 3,000 pregnancies and refers to cancer that is diagnosed either during pregnancy or within 1 year of delivery.
On today's episode, we'll be talking about pregnancy-associated cancer, with a focus on breast cancer, as it is the most common cancer diagnosed during pregnancy. This discussion will be based off of a JCO OP article published in late 2024 called “Multidisciplinary Management of Pregnancy-Associated Breast Cancer.”
I'm excited to welcome both the first author of this review article and a patient advocate to the podcast today. They are both passionate about improving outcomes for people with breast cancer.
Dr. Erin Roesch is an assistant professor of medicine at Cleveland Clinic Lerner College of Medicine and a medical oncologist at the Cleveland Clinic Taussig Cancer Institute specializing in the treatment of breast cancer. She is involved in clinical trials research, and some of her specific interests include the care of young women diagnosed with breast cancer, fertility in oncology patients, and women's health and survivorship.
Julia Maues is a patient advocate working with researchers, clinicians, and other stakeholders to ensure research is patient-centered, innovative, accessible, and inclusive. She was working as an economist when she was diagnosed with breast cancer while pregnant in 2013. After delivering her son, she found out that cancer had already spread to her bones, liver, and brain. Julia co-founded GRASP (Guiding Researchers and Advocates to Scientific Partnerships), an organization that connects and fosters collaborations between researchers and patient advocates. She is also active within the Metastatic Breast Cancer Alliance and helped write the ASCO guideline for brain metastasis.
Our full disclosures are available in the transcript of this episode, and we've already all agreed to go by our first names for the podcast today.
Erin and Julia, it's really wonderful to speak to you today.
Dr. Erin Roesch:
Thank you. I appreciate the opportunity to be here and discuss
this really important topic.
Julia Maues:
Thank you for having me. It's very important to include the
patient voice on this topic, and unfortunately, I have a personal
experience with this.
Dr. Fumiko Chino:
Our topic today is pregnancy-associated cancer. Erin, can you
give us a quick overview of the background for pregnancy and breast
cancer? I know in the recent era, breast cancer rates for those
under the age of 50 have been rising faster than for other cancers,
up to 1.4% per year since the mid-2000s. I'd always thought that
pregnancy-associated cancer was pretty rare, and so I was really
shocked to read in your paper that for women younger than 35, 1 in
6 with breast cancer are diagnosed around
pregnancy.
Dr. Erin Roesch:
Yes. So, a cancer diagnosis during pregnancy is rare, with the incidence, as
mentioned, of about 1 in 3,000 pregnancies, with
pregnancy-associated breast cancer, or PABC, representing about 7%
of all breast cancers diagnosed per year. Among women under the age
of 45, PABC accounts for roughly about 2.5% to just over 6% of
breast cancer cases. And for women less than 35 years, this rises
to about 15.5%.
Studies have shown a rise in PABC in recent years, and this is anticipated to continue with the trend of delayed age at childbearing. In regards to the pathophysiology of pregnancy-associated breast cancer, various hypotheses have been proposed to kind of try and shed more light on how this occurs and the driving factors for PABC. So these include hormonal changes that occur during pregnancy and lactation, immunologic changes that can lead to the immune tolerance of tumor cells, and also breast tissue involution that occurs after delivery and breastfeeding, which can lead to a proinflammatory state.
In regards to risk factors, these include a positive family history, which is one of the strongest risk factors for breast cancer development, this includes pregnancy-associated breast cancer, pathogenic germline mutations—specifically BRCA1 or 2—and older maternal age at time of birth. We also know that breastfeeding has been shown to have a protective effect against breast cancer development.
Dr. Fumiko Chino:
So what I'm hearing from you is that just given the incidence
rising in younger people and also delayed pregnancy, that this is
really something that we're unfortunately going to be facing more
and more frequently in our clinics and something that patients
unfortunately will find that they have to face as
well.
Dr. Erin Roesch:
Yes, yes, I think that's accurate. And just again, I think
points to the importance of awareness of this particular
topic.
Dr. Fumiko Chino:
Now, Julia, your lived experience in this space is really
invaluable. Do you mind sharing it with us?
Julia Maues:
Yeah, of course. I was pregnant at 29, and I found a lump in
my breast. I had an excellent OB-GYN and team, and they took it
seriously. I think she wanted to watch it for a few weeks, but as
soon as it didn't go away, she ordered an ultrasound, and that
turned into a biopsy, and that turned into a cancer
diagnosis.
I lived near a comprehensive cancer center. I had multidisciplinary care, really excellent team, and was treated with chemotherapy during the pregnancy, which was very surprising to me and hard to accept. But they did provide me with a lot of evidence that that is the best treatment for both my baby and me. And so I did four cycles of Adriamycin-Cytoxan during the pregnancy and delivered my son at 37 weeks. He was healthy and full of hair, even though I was bald. That was very important, I think, for many reasons, but it showed visually that the placenta did its job and he was protected.
After he was born, I could do scans that I couldn't do while pregnant. I had a lot of back pain and things that were thought to be pregnancy-related, or maybe they knew, and they just didn't go there because it really wouldn't have made a difference at that point, like, the treatment couldn't be any different. But I did that scan and found out that it was metastatic, and that changed the treatment that I did after the pregnancy, and instead of eventually surgery, I just stayed on systemic therapy for that long. And spoiler alert, this is 12 years later. That baby is in sixth grade and thriving. And I am very grateful for the privilege that I have to have received such excellent care and have access to the treatments that I have had, and also the luck to have had good response to treatments.
Dr. Fumiko Chino:
I love how you've taken your story and the successes, but also
the horror and the terror, and really used it to galvanize your
life in a mission to try to improve patient care for others. So
I've always really thought that was phenomenal in terms of your
mission and your drive.
Julia Maues:
Thank you. I'm very, very happy that it helps other people,
but selfishly, it helps me to deal with my own difficult
experience, and it's been a way to make something good out of
this.
Dr. Fumiko Chino:
I feel very aligned with you on that in terms of my own
personal story as a caregiver. It's one of the reasons why I became
a physician. So I feel like you and I have a common touchstone
there. And I think so many people in medicine and so many patient
advocates are really trying to give back into a system to try to
improve it for all because of either the ways that it helped them
or the ways that they thought that it could be doing better. So
thank you for sharing that with us.
Now, Julia had mentioned that the staging scans were delayed until after delivery due to some appropriate safety concerns. And I certainly know that those diagnosed during pregnancy often have diagnostic delays. Erin, do you mind discussing what delays may occur in pregnancy-associated breast cancer and if there are any solutions to improve those delays?
Dr. Erin Roesch:
Sure. And I'd like to echo and certainly, you know, thank
Julia for sharing her story. And I think as an oncologist, we learn
so much from our patients, and so it's really, really important for
us to understand, to be able to appreciate everything you've gone
through. So I just, I really thank you for that.
So in terms of, you know, the delays that we see—and I think, Julia, your story through this really kind of outlines much of what we see in terms of some of these delays and challenges related to the diagnosis and the workup of pregnant women with suspicion of breast cancer. So although the majority, about 80%, of breast cancers or breast masses, rather, detected during pregnancy will be benign, any palpable mass present for a couple of weeks or more in the breast or axillary region should really be clinically investigated, you know, as your doctor did. Additionally, any other breast changes—less common things such as an asymmetry, thickening of the skin, redness of the skin, nipple changes—those things should also be investigated, you know, as they raise clinical suspicion.
Pregnancy-associated breast cancer often remains undetected in pregnant women until later stages due to potentially symptoms being masked by the physiologic breast changes during pregnancy. Studies have shown that a relatively high proportion, you know, over 80%, of pregnancy-associated breast cancers are self-palpated. We know that later stage at presentation and a delay in care can lead to an inferior prognosis or affect someone's prognosis.
So I think in terms of the challenges, in terms from a diagnostic evaluation standpoint, typical imaging modalities that we use for breast cancer, we know some can have harmful effects on a growing fetus. So the evaluation should begin, as Julia mentioned, with an ultrasound. That would be the initial gold-standard diagnostic test. And then subsequently, a mammogram with abdominal shielding can and should be used to provide additional details regarding the breast mass.
In terms of systemic staging, so I think again, as Julia pointed out, the traditional evaluation for metastatic breast cancer typically includes CT scans with IV contrast of the chest, abdomen, pelvis, and a bone scan or a PET scan. However, these imaging tests should be avoided during pregnancy, particularly during the first trimester, due to the harmful exposure of radiation and IV contrast to the fetus.
In regards to some of the solutions, I think from a systemic staging standpoint, alternative imaging can be used. So when indicated or appropriate, things such as a chest x-ray with shielding, an ultrasound of the liver, an MRI of the spine without contrast could also be considered, again, in the appropriate setting. But I think, you know, Julia certainly highlights the challenges that we face from a diagnostic standpoint.
Dr. Fumiko Chino:
Julia, you had said something probably that was the most
important, which is that you felt the mass and that your physician
actually took it seriously. And I certainly have heard from other
patients that when they were pregnant and they felt something, it
was sort of just ‘pooh-poohed’, for lack of a better term, as, you
know, normal changes in the breast, and it wasn't followed up to
the extent that it should have. Do you have anything to add in
terms of delays? I know you are certainly very active in the
advocacy community, so I feel like you've probably heard every good
and negative story about delays to diagnosis or
care.
Julia Maues:
Yeah, unfortunately, we hear these stories all the time. The
clogged milk duct, which may be very plausible, but needs to be
investigated, right, is not always the case. And unfortunately,
anecdotally, and I know you all have been part of evidence on this,
women that are Black experience this at a much higher rate. And
then we see younger women with doctors that just tell them that,
“Women your age don't get breast cancer.”
Dr. Fumiko Chino:
Which is patently false, as we know, because the rates of
breast cancer in younger women are rising. So I feel like we need
to be standing on top of rooftops trying to make sure we're
advocating for our patients and educating our colleagues about the
early-onset cancer risk.
Julia Maues:
And
I'll say one more thing that I think patients also have a wrong
understanding of this statistic about pregnancy protecting from
breast cancer after menopause. The only thing that translates is
‘pregnancy equals lower rate of breast cancer’, right? So that is
not necessarily the case while you're pregnant or in the short
years after the pregnancy. It is a statistic about postmenopausal
breast cancer, which won't affect the pregnant person for many
years.
Dr. Fumiko Chino:
Julia, this review highlights the role of the
multidisciplinary team for optimal management of
pregnancy-associated breast cancer. And from the article, it says,
"At the time of diagnosis, multidisciplinary teams should be
consulted, including breast surgery, plastic reconstructive
surgery, medical oncology, radiation oncology, maternal-fetal
medicine, genetics, and psychosocial services." Can you speak to
who was involved with your care, including what really worked well
in this incredibly stressful situation or lessons learned for what
could be improved? I know you said you did have the benefit of a
comprehensive cancer center and a multidisciplinary
team.
Julia Maues:
Yes, absolutely. A team that came from many angles at this
problem was very important. I did see a surgical oncologist, a
radiation oncologist, a plastic surgeon, the medical oncologist, of
course. And then I had two OB-GYNs, my first OB-GYN and a high-risk
OB-GYN, and I did see genetic counseling. And I think after those
first appointments, the surgeon and the radiation oncologist and
the plastic surgeon didn't play a role. They were going to come
back into my care after the pregnancy; that was the plan. But the
OB-GYN, and especially the high-risk OB-GYN, was very important.
And the fact that they were in touch with my medical oncology team
and they were complementing each other in terms of medications and
what treatment I needed, that was very important.
Dr. Fumiko Chino:
Erin, do you have anything to add in terms of coordinating
these large teams? I know that the medical oncologist often works
as sort of the quarterback in this scenario for these
teams.
Dr. Erin Roesch:
Yes, and that's exactly how I typically describe myself to
patients, is kind of as that quarterback. I think that Julia's
description certainly highlights the importance of
multidisciplinary care, and it's really crucial for
pregnancy-associated breast cancer. And it's important to recognize
that it's not a one-size-fits-all approach either, and that not all
patients' needs might be the exact same. But that being said, it's
helpful to have, you know, an algorithm that outlines the general
steps, diagnosis, and management of our patients with
pregnancy-associated breast cancer. And it's really important—it's
an overwhelming time for patients and their families. So it's
really, you know, essential to make sure that our patients have
knowledge of and access to all of the resources that are available,
you know, during their diagnosis, treatment, and in survivorship. I
think that again, just stressing that multidisciplinary care from
the beginning is really key.
Dr. Fumiko Chino:
That segues nicely into the next topic, which is: I really
found the figure in your article to be particularly helpful as a
flowchart for decision-making in pregnancy-associated breast
cancer. How do you approach shared decision-making, patient
autonomy, and informed consent with your patients when faced with
some of these really heartbreaking decisions?
Dr. Erin Roesch:
So, you know, just as I said, it's certainly, you know, it's
very individualized, but it is very helpful to have a guide that we
can follow and that we can also use for educating other providers
on what are modalities that are safe during pregnancy, what we have
data on, where we're lacking, et cetera. So I think that when I
talk with my patients in this type of situation, you know, I think
open lines of communication, transparency, super important. And I
think recognizing that breast cancer diagnosed during pregnancy
often occurs during a time when a woman is figuring out their life
plan. They could be finishing school, family planning, you know,
career goals, establishing relationships, just to name a few
things. So it's helpful to be aware of these things when we're
counseling our patients so that we can better really appreciate,
understand their goals and, as much as possible, help them achieve
their goals while also effectively treating their breast cancer. So
I always really, really strive to involve my patients in the
decision-making regarding their care, but also advise them that I'm
there to provide full support and whatever information that I can
to be helpful.
Dr. Fumiko Chino:
I love that thing to highlight—that cancer doesn't define
someone's existence, and they were a whole human being before their
cancer diagnosis, and they should be a whole human being after
their cancer diagnosis. And so making sure that we are talking to a
person, not to a cancer diagnosis and a treatment plan. It's an
individual on the other side.
Now, Julia, I know that you said that your stage IV diagnosis came after you delivered. I'm sure that there was a shock and horror related to that. Do you have anything to add in terms of the multidisciplinary team or how it pivoted once you got that diagnosis?
Julia Maues:
I
completely agree with the ‘quarterback’ name to the medical
oncologist. They definitely have, even today, this role in my life,
and I definitely benefited from really wonderful quarterbacks in my
years. But I think another very important connection there is being
able to connect to other patients with a similar experience. I did
- at different times, I was able to connect to people who had just
had a baby after treatment during pregnancy, or who had a child
that was maybe a little bit older and they were thriving, and just
knowing that that was a possibility or a likely possibility for my
child, even though I was making him go through these treatments
while inside me.
Dr. Fumiko Chino:
Now, pregnant women, human fetuses, and neonates have
additional protected status under the federal government that
mandates special IRB review. This means that pregnant women are
often excluded from research, often without actually clear
justification, even when the research really poses minimal risk.
Erin, how do we improve the body of evidence to support best care
for patients with pregnancy-associated breast cancer, understanding
some of these concerns?
Dr. Erin Roesch:
Yes, so I think it is really important to utilize the research
means that we do have. So an example of this could include
retrospective analyses, you know, looking at registry data. We can
really gain important, valuable information this way. Additionally,
learning from thought leaders in this space and experts in this
field can help providers and patients better understand the data
that we do have and where our gaps may exist.
I think, furthermore, various institutions have niche programs that are dedicated to education and research for young women with breast cancer and, within that umbrella, pregnancy-associated breast cancer. So it's really important, I think, to be aware of those resources as well that do exist.
Dr. Fumiko Chino:
You really highlighted something important, which is that in
this situation of pregnancy-associated breast cancer, it likely is
best to go to a specialty center, you know, a comprehensive cancer
center of some variety, or a center of excellence so that you can
really rely on both the expertise of the team but also their
capacity for building that multidisciplinary team that is, I think,
really required to treat a patient with cancer and pregnancy
well.
Now, Julia, I personally see some parallels here with exclusions for people during pregnancy and also the exclusions for metastatic breast cancer from research studies. Do you mind speaking about that? I know you've been a strong advocate about inclusion.
Julia Maues:
Yes, absolutely. We see a lot of clinical trials that include
metastatic breast cancer patients when it comes to the actual
treatment and the new drugs. But when it comes to survivorship
trials, and let's say, what is the effect of exercise on your
outcome? Patients with metastatic breast cancer are often excluded.
And we are surviving too, right? We need to be studied in that
scenario as well. And I think we're fortunately seeing some change
in that. And there are a few trials, for example, open right now
looking at diet and exercise for specifically metastatic breast
cancer.
Dr. Fumiko Chino:
It's amazing to think about how you've really straddled both
high-risk groups, you know, the pregnancy-associated breast cancer,
metastatic breast cancer, and really dedicated your life to making
inroads and positive changes for both of these communities. So I
really am so grateful for you for that.
We are sort of wrapping up this podcast. I wanted to give a little bit of space at the end to have any open topics, if there's anything that we feel is under-addressed or unaddressed in this topic. I know that we could probably spend, you know, five hours talking about it.
Julia Maues:
I
will say one thing that is perhaps the most difficult decision.
When I discovered my diagnosis, I was very happy to be pregnant,
but I was faced with the question of, I now have a disease that is
life-threatening. Am I going to be alive by the end of this
pregnancy? And in order to be alive by the end of this pregnancy,
do I need to terminate this pregnancy? I think that is a question
that was the most difficult one during that moment and is one that
I discussed with my team. And fortunately, in my case, it was
possible to give me treatment during the pregnancy and still not
harm my baby. But I think this is the first thing that we're faced
with at that moment of the diagnosis.
Dr. Fumiko Chino:
And I think that concern is certainly even more relevant in
the climate where, depending on where you live, that may not even
be an option. And even, I have definitely heard some concerns about
even chemotherapy while being pregnant could be potentially
something that would be at risk. Erin, do you have anything to
add?
Dr. Erin Roesch:
Yeah, no, I think that's a valuable point too, is that again,
it's a very, very challenging, scary time at initial diagnosis. And
just like Julia mentioned, many women are very happy they're
pregnant. And even to Julia's point earlier about receipt of
chemotherapy during pregnancy, you know, many women might not think
that that's possible. We have data that has shown relative safety
of certain chemotherapies during pregnancy, you know, after the
first trimester. And so I think it's important that again, with the
shared decision-making, that women know all of this information so
they can process and come to the best decision for
themselves.
So, and I think also, not that we can predict the future—I always tell my patients I wish I had a crystal ball that I could tell what was going to happen in the future for people. But I think that we've had a lot of advances in terms of breast cancer treatment, and this includes for metastatic disease. And so our patients are living longer and living better. So I think that's important to remember too. And just again, make sure that we, as much as possible, have these conversations upfront with what we know and what we don't know so our patients can feel supported through this process.
Dr. Fumiko Chino:
That's a really good, positive note to end it on. So I'm so
grateful for your time. Thank you for this wonderful conversation
today. Thanks to Dr. Roesch and Ms. Maues, as well as our
listeners, for your time today. You can find the links to the
papers that we discussed in the transcript of this
episode.
If you value the insights that you hear on the JCO OP Put into Practice podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts. I hope you'll join us next month for Put Into Practice's next episode. Until then, please stay safe.
The purpose of this
podcast is to educate and to inform. This is not a substitute for
professional medical care and is not intended for use in the
diagnosis or treatment of individual
conditions.
Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Conflicts of Interest:
Erin Roesch:
Honoraria
Company: Intellisphere
Consulting or Advisory Role
Company: bioTheranostics
Company: MDedge
Company: Seagen
Julia Maues:
No Relationships to Disclose