What Steps Can Patients Take to Combat Cervical Cancer Disparities?

Cervical cancer disparities persist, but how can patients help improve disparities? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the value of patient advocacy, elevating patient voices, and proactive patient advice for self-care. 

[ACT]IVATION TIP

“…focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.”

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Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what are the next steps in addressing the disparities you’ve identified in cervical cancer diagnosis and management, and how can patients be involved in this process?

Shannon MacLaughlan:

The most important thing that a patient can do is take care of themselves and get through your treatment successfully. You are a survivor of that cancer the moment you hear the word cancer. The moment you get that diagnosis, you are a survivor, and you focus on that. Try not to isolate yourself, because this is a team, it’s a team sport. Your medical team should have a team, and you should have a team.

Then, when you are feeling healthy, and when you are energized, I need you to spread the word. The most impactful way a patient can contribute to breaking down barriers is to start from the inside, to share your story, to talk about it. Advocacy can be as simple as going home and talking to your family about the kind of cancer that you have, how it started, what they can do to prevent it, what they can do to prevent it in their kids. Just start there, and then when we get you healthy again, then it’s time to elevate your voice.

I feel strongly that when we see disparities in outcomes related to cancer, it is the fault of the system, and it’s a little too easy and maybe not realistic to tell a patient to advocate for yourself with your doctor, because you might not have a choice in your doctors, and that’s just easier said than done. The system has to take ownership. We have to take ownership, and we have to learn from you.

And so those of us trying to break down these inequities and introduce some justice, particularly in the world of cervical cancer, we aim to elevate the voices of the people with the lived experiences and the communities who are experiencing it, because most often patients come to my office and they say, even though this was a thing, I didn’t even know we had our own ribbon. I hand out ribbons to patients with cervical cancer because they’re survivors. I need them to talk about it.

I need them to talk about it in their communities so that they know it’s a thing, and they hold us accountable. So my action item is, one, focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.


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Why Does Access to Care Matter in Cervical Cancer Treatment?

What is the role of socioeconomic status in advanced cervical cancer treatment? Expert Dr. Shannon MacLaughlan from University of Illinois discusses impacts of socioeconomic status and psychosocial determinants of health on cervical cancer care, the importance of clinical trials, and proactive patient advice to optimize care.

[ACT]IVATION TIP

“…no matter what your experience may be, when you go to a doctor or other provider with cervical cancer, whatever that experience is, I want you to know that one, you are not alone. You are not the only person experiencing this. It is not your fault. You are not to blame for this. And so whatever you may feel or experience in the clinical encounter or the encounter with the academic centers or the cancer center or the front desk or in radiology, whatever you experience, know that you are a survivor, know that you are strong and resilient, and please do not feel shame.”

See More From [ACT]IVATED Cervical Cancer

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Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, how does socioeconomic status impact treatment and outcomes in advanced stage cervical cancer?

Shannon MacLaughlan:

So, first of all, I’ll say that cervical cancer is as largely a preventable cancer, and socioeconomic status and other psychosocial determinants of health are usually contributing to an individual’s ability or access to get preventative care. And so our patients who are presenting with advanced disease, or even most patients who were diagnosed with cervical cancer have not had adequate screening. And so socioeconomic status and other social determinants of health really play a role in whether or not the cancer can be prevented to begin with.

The best cure is to never let it happen. Now, when it comes to outcomes in advanced stage, there are two things that I would point out. Number one, we do have some qualitative research, not my work, but some really important work that demonstrates that when reviewing a medical record, you’re much more likely to identify negative language coming from a provider as a descriptor for a patient. If the patient is from a vulnerable community or from a lower socioeconomic status or is not white.

And that doesn’t necessarily mean your provider is saying bad things about you. What it’s saying is, this is my least favorite, but I still see it, this unfortunate patient. Another example would be, this patient is noncompliant. And the word noncompliant, what a provider should mean by that is that that person is not able to do everything we ask of them. Well, that could be because we are asking too much and not listening to them for what their goals are and what they needed. So an alternative of describing that would be, these are the things that the patient can do as opposed to emphasizing what we’re telling them to do that they’re not doing.

All of that is evidence of implicit bias, and implicit bias and systemic racism are things that are really hard to undo unless you go back to the beginning. And in this case, that means research. So when it comes to outcomes in treatment for advanced cervical cancer, I have to point out that though we have had some exciting advances in treatment of recurrent and metastatic cervical cancer, I have to point out that there are very few patients of color on those clinical trials. Most of them are done in Europe or in predominantly white-privileged communities in the United States.

And that has to do with ease of participation in clinical trials, because it’s hard enough to get yourself through cancer treatment. We are extremely demanding of our patients and survivors. And then you add to that a clinical trial protocol, it’s even harder. There are more visits, there’s more. And so those coming from marginalized, underrepresented communities aren’t represented in the research being done to find cures.

So that means we may find something that we think works. We don’t know if it’s going to work in a patient who has no one similar to them who participated in the treatment before. And so until we can really be inclusive in the clinical trial research, and even not just clinical trial research, but all kinds of research, meaning learning more about tumors that grow in particular communities and what’s going on in community levels or at the community level with extrinsic sources of stress or exposures or pollution or health outcomes or food insecurity, all of those things are going to play a role in someone’s health. And the healthiest people are most successful at surviving cancer treatment, let alone the cancer itself.

My [ACT]IVATION tip for this is no matter what your experience may be, when you go to a doctor or other provider with cervical cancer, whatever that experience is, I want you to know that one, you are not alone. You are not the only person experiencing this. It is not your fault. You are not to blame for this. And so whatever you may feel or experience in the clinical encounter or the encounter with the academic centers or the cancer center or the front desk or in radiology, whatever you experience, know that you are a survivor, know that you are strong and resilient, and please do not feel shame.


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How Does Insurance Status Impact Cervical Cancer Diagnosis?

 Health insurance status has some clear impacts on cervical cancer stage at diagnosis. Expert Dr. Shannon MacLaughlan from University of Illinois discusses key points from her cervical cancer research findings.

 

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Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

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Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

What Steps Can Patients Take to Combat Cervical Cancer Disparities?

What Steps Can Patients Take to Combat Cervical Cancer Disparities?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, how does your research highlight the role of health insurance status in influencing the stage at which cervical cancer is diagnosed among different racial and ethnic groups?

Shannon MacLaughlan:

Well, we found that patients who have private insurance or Medicare are much more likely for their cervical cancer to be diagnosed in an early stage than an advanced stage. We already knew going into this particular work on the SEER database, we already knew that there were some inequities that broke out by race and ethnicity, such that Black patients, Hispanic patients, and Native American and Alaska Native patients were more likely to present with an advanced stage cervical cancer than their non-Hispanic white counterparts. And it turns out that having insurance can mitigate that discrepancy.

Now, that research is really designed to teach a system that we have to do better. That research is hard to package into something for a particular person to do differently in their life. It’s easy to say, “Go get insurance.” But we all know that in real life, it is not that easy. So what’s really going on here is that screening programs are effective in populations who are getting screened, and insurance is a marker of someone who has access to primary care and preventive care and the ability to focus on health at all. 


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Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

What are key points about advanced cervical cancer treatment in academic versus non-academic settings? Expert Dr. Shannon MacLaughlan from University of Illinois discusses patient care at academic versus non-academic cancer centers, multidisciplinary care, support services, clinical trials, and the importance of second opinions. 

[ACT]IVATION TIP

“…there’s always a role for a second opinion, and insurance providers are mandated to provide coverage for a second opinion. And that can be an important door for you to open to make sure that your case is reviewed at one of those academic centers.”

 

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How Does Insurance Status Impact Cervical Cancer Diagnosis?

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Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what role do academic centers play in the treatment of cervical cancer? And how might patients at these centers receive different care compared to those at non-academic centers?

Shannon MacLaughlan:

An academic cancer center, or a cancer center that has been designated as a comprehensive cancer center, or a National Cancer Institute cancer center, is going to have a certain, they’re required to provide multidisciplinary care that meets the highest standard of care. So an academic center or an NCI-designated center will, by definition, have the internal quality metrics, ensuring that they are doing the right thing, which you shouldn’t have to guess whether or not your team is doing the right thing.

But one of the biggest contributors to cervical cancer existing is and/or recurring and women dying from it is that we don’t always do the right thing. So, an academic center, number one is going to provide for you a multidisciplinary team. You need to make sure that that team includes a gynecologic oncologist.

You may need a radiation oncologist. The best multidisciplinary care of the patient with cervical cancer also includes a palliative care team that can manage pain control and other symptom management effectively. And these centers are required to screen patients for other needs than just treating the cancer. So if you go to an oncologist, wherever we are, we are going to be experts in the cancer and how to treat it.

And hopefully, we are keeping up with the latest and greatest and most effective treatment options. And if you go to a cancer center that has NCI designation or is an academic center, then that should come with it…the understanding that taking care of a patient with cancer is more than just killing the tumor.

It’s about taking care of the patient and taking care of that patient’s family and taking care of that patient and their family in the context of their community. We see often in patients with cervical cancer, the need for transportation services, for social work support, not only to cope with the diagnosis, but to cope and navigate with the treatment that we lay out for you and how to plug it into your life and deal with the financial toxicities that come along with it. And those academic centers are going to be equipped with the teams who can connect you with smoking cessation and assist with food security and other things that contribute to your wellness.

The other important thing about academic centers is access to clinical trials. And in the world of cancer care, access to clinical trials is a marker of quality and better outcomes for patients. We are also starting to see, now that we’re looking for it, we’re starting to see that we can, oftentimes we see survival outcomes diverge based on things that it shouldn’t. Diverges for Black women, not as effective as white women.

We can close those gaps when patients participate in clinical trials. It doesn’t necessarily mean that a clinical trial is available to a particular individual and that they may not be eligible for anything in that moment, but access to those clinical trials is a critical big picture for successful treatment of cervical cancer or any kind of cancer.

And then finally, I would say that academic centers have the mandate of educating the next generation of providers, and we need to do better. So, for several years, I ran a clinic specifically for patients with cervical cancer. And just doing that, spending a day seeing patients, only patients, dealing with cervical cancer, was such an important learning opportunity for the residents and the medical students because I hate to tell you, but we are often taught in medical school that cervical cancer isn’t a problem anymore and that we cured it with successful screening.

But we didn’t. We haven’t actually made any headway meaningful in incidence of cervical cancer in a couple decades. So, it is important that we educate our next generation of providers that cervical cancer is, in fact, a problem. The treatment that we provide for cervical cancer is in and of itself very tasking and somewhat traumatic thing for a patient to experience. And providers need to learn how to provide culturally-accessible, empathic care for patients coming to the table with this particular kind of cancer.

So, that’s more of an ask than a recommendation. I ask you to go to an academic center so that you can teach the next generation. That’s really important to me. Now, my [ACT]IVATION tip for this topic is that you always have an opportunity for a second opinion.

Why does that matter? It matters because not everyone has access to an academic center for cervical cancer or any kind of cancer. You might not live near an academic center. You may not, even if you do live near one, you might not be able to get into one. But there’s always a role for a second opinion, and insurance providers are mandated to provide coverage for a second opinion. And that can be an important door for you to open to make sure that your case is reviewed at one of those academic centers.

Lisa Hatfield:

Okay, thank you. And I’m also a big advocate for getting an expert opinion, somebody who just sees those types of cancers. So, do you recommend if a patient is diagnosed with cervical cancer, they are not near an academic center, would you recommend that they do that at the time of diagnosis to try to seek out a second opinion or a consult at least once right at diagnosis? Is that the best time for that, do you think?

Shannon MacLaughlan:

Absolutely. The most effective time for a second opinion is before you start treatment. Once you initiate a treatment, there are very few certain…because you’ve started it, it’s almost always the best thing to continue doing it. Even if it’s not what I would have recommended to you to begin with. If you’ve already initiated it, you’re committed. So it’s tricky when you have a new diagnosis. It can be anxiety-provoking to have to wait for a second opinion or wait to get in for one or wait to start your treatment. But if at all possible, that’s the most effective time.

I would also add that many centers offer community doctors access to their tumor boards. I hate the term tumor board, but because it’s universal, I can’t change it. A tumor board is a multidisciplinary conference in which providers of each subtype gather and review cases. And so many academic and comprehensive cancer centers will offer that service to community physicians so that you may, if you can’t physically get to an academic center for a second opinion, then you may be able to have your case reviewed. There could be a telehealth option. Sometimes that’s an option when crossing state lines is necessary. And then finally, if all else fails, getting a second opinion on the pathology can be helpful.


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Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

Advancements in cervical cancer treatments have created a new landscape for patient care. Expert Dr. Shannon MacLaughlan from University of Illinois discusses immunotherapy, targeted therapies, antibody drug conjugates, and proactive advice for patient care. 

[ACT]IVATION TIP

“…ask your team about clinical trial opportunities, because clinical trials are how we discover the next best treatment. And if you are eligible for a clinical trial, then that means you could gain access to that treatment early. So ask your provider about clinical trial opportunities.”

 

Related Programs:

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Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?

Why Does Access to Care Matter in Cervical Cancer Treatment?

Why Does Access to Care Matter in Cervical Cancer Treatment?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what exciting advancements in cervical cancer treatment are on the horizon? For example, how do targeted therapies like antibody drug conjugates fit into the broader future landscape of cervical cancer therapies?

Shannon MacLaughlan:

There are a lot of exciting developments in cervical cancer. And it’s exciting as a gynecologic oncologist because earlier in my career when I talked with someone diagnosed with stage IV cervical cancer or who had a recurrence, there were basically no treatment options that would work, and now we have so many options for patients, and I am starting to see complete responses in situations I’ve never seen before.

So some specific advances, I would say, one, would be in the surgical approach of cervical cancer. We are getting much better at taking care of patients who have surgeries and minimizing the impact of the surgery on their body. With regard to systemic treatment options, I would say the most, the biggest impact I’ve seen so far is the addition of immunotherapy for the treatment of cervical cancer such that I have seen patients with stage IV disease have complete responses to their treatment, and I’ve seen patients who have had recurrences in their spine get complete responses and get to another remission, and that’s exciting. That’s the lease on life that we could not talk about just a few years ago.

Targeted therapies are an important phenomenon and movement in all cancer care, because it represents thinking about cancers differently. If we think about cancers based on where they start, where in the body they are started so if we think of cervical cancers just as a cancer that starts in the cervix, then we can only lean on experience from other patients who have cervical cancer, and it puts our thinking into a very narrow box. Targeted therapy means that we’re looking at the cancer, not where it started, but what that tumor is doing under the microscope. What proteins is it producing, what mutations does it have? And those mutations are usually a clue to how the cancer is surviving. And if we can have that kind of a clue, then we can choose a treatment that can target that particular mutation, no matter where the cancer started in the body.

It’s a very new kind of drug called an ADC or an antibody drug conjugate. What that means is the antibody targets the mutation. All it does is bind to the cancer cell, but it’s got attached to it, a little molecule of chemo, and so it sneaks itself into the cancer cell and the chemo can kill the cancer cell from the inside, instead of the outside. And that can improve efficacy. It definitely changes the side effect profile and toxicity profile. And so that has opened up additional doors for patients with cervical cancer that weren’t previously available. 

My [ACT]IVATION tip for this topic is to ask your team about clinical trial opportunities, because clinical trials are how we discover the next best treatment. And if you are eligible for a clinical trial, then that means you could gain access to that treatment early. So ask your provider about clinical trial opportunities.


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Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Cervical cancer treatment disparities exist, but what role do poverty and systemic barriers play? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the impact of poverty and systemic barriers and proactive patient advice for improving your care and reducing cervical cancer disparities. 

[ACT]IVATION TIP

“…for someone who is diagnosed for the first time, bring someone with you, bring someone with you, every time you see any kind of provider, when at all possible, because the health care system has not been designed for you, obviously, because we failed you. Bringing someone with you helps you close that gap.”

 

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Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what are the noted disparities you’ve observed in the treatment of cervical cancer among different demographic groups?

Shannon MacLaughlan:

This is a tough question to answer, not because I don’t know the answer, but because the answer requires taking ownership of the problem as a provider. Cervical cancer is preventable, because we have a very effective vaccine against the HPV virus, and because we have tools to screen for cervical cancer, including Pap smears, including HPV testing, and when patients are diagnosed with cervical cancer, it means the system failed them. It means that everything we think we’re doing to prevent something bad from happening to a person, we are not doing effectively.

And so when I think about a preventable cancer and who gets it, it’s the people who fall through the cracks. And the people who fall through the cracks are the people who are coming from vulnerable communities, where perhaps their biggest existential threat is not whether or not they get a Pap smear, but whether or not they can put food on the table, or whether or not they have a roof over their heads, or whether or not they can keep their children safe. So disparities and inequities tend to align with poverty and systemic racism and implicit biases and just flat-out marginalization.

So that the demographics that are experiencing the highest mortality, and experiencing the highest incidence of cervical cancer are women of color, Native American and Alaska Native patients, patients of Hispanic backgrounds, and immigrants. So my action tip for this, for someone who is diagnosed for the first time, bring someone with you, bring someone with you, every time you see any kind of provider, when at all possible, because the health care system has not been designed for you, obviously, because we failed you. Bringing someone with you helps you close that gap.

For our Hispanic patients, a huge barrier is a language barrier, and we’re required, if we don’t speak the language, we’re required to provide interpreters in the context of the clinic visit, but the clinic visit is actually only a very small part of a treatment journey. The moment you have to navigate getting to the campus of a medical center, you have to navigate the medical center itself. You may have to ask for directions. You’re going to have appointments with a gynecologic oncologist or radiation oncologist, nuclear medicine, radiology, an infusion unit. Come with another set of eyes and ears. It’s a great idea to bring your own interpreter, if you can.


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Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

What should cervical cancer patients to know about diagnosis, staging, and surveillance? Expert Dr. Shannon MacLaughlan from University of Illinois discusses metastatic cervical cancer versus recurrent cervical cancer, cervical cancer testing, and proactive patient advice to help ensure optimal care.

[ACT]IVATION TIP

“… when you are completing your treatment at the time of diagnosis, I want you to ask your doctor for your treatment summary. A treatment summary is in layman’s terms, meaning language that any of us can understand that describes to you what your diagnosis was, it recaps the treatment that you experienced, it explains what impacts that treatment could have on your health, and it outlines what your surveillance strategy should be.”

 

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How Does the Stage of Cervical Cancer Impact Treatment and Prognosis?

How Does the Stage of Cervical Cancer Impact Treatment and Prognosis?

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How Does Cervical Cancer Differ From Other Gynecological Cancers?

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what exactly is recurrent or metastatic cervical cancer, and are there tests that are used to confirm a recurrence?

Shannon MacLaughlan:

So the word metastatic means that the cancer has spread beyond the organ where it started. So in this circumstance, metastatic cervical cancer means that it has spread away from the cervix. That could mean including other parts of the uterus. It could mean getting into lymph nodes. It could mean invading into the bladder or to the rectum, or it could mean spreading to other parts of the body. So when we say metastatic cervical cancer, that means that the cancer is existing someplace other than just the cervix. Someone can be diagnosed with metastatic cervical cancer at the time of diagnosis.

Now, recurrent cervical cancer means that someone has been treated for cervical cancer, and then the cancer comes back. If and when a cancer comes back, it can come back in different locations. Cancer likes to break its own rules, making it unpredictable. And one of our challenges in treating and curing it, but a recurrent cervical cancer can come back exactly where it was the first time, back in the cervix or back in the pelvis, or it can recur in a lung or in a lymph node or in bones sometimes in other parts of the body.

So there’s a distinction between recurrent cervical cancer and metastatic cervical cancer, though sometimes it’s subtle. So, when someone is diagnosed with cervical cancer for the first time, there are standard tests that should be done to evaluate the extent of the disease. We need to know the size and shape of the tumor in the context of the size and shape of the person that requires a pelvic exam. Pelvic exam includes a speculum, that’s the metal, sometimes plastic instrument that we use inside a vagina to visualize the cervix.

And then the examiner will use a hand inside the patient, inside the patient’s vagina and rectum to evaluate how much space the tumor is taking up in the person’s body and what other organs are involved. At the same time, a biopsy of that tumor is necessary, not just to prove the diagnosis of cervical cancer, but to be able to evaluate the molecular makeup of the tumor. We want to characterize the grade of the tumor. We want to look for particular proteins and whether or not they are expressed.

Some of those proteins, for example, PD-L1 or HER2 is one that we’re starting to look at. We want to be able to look at those under the microscope, because that can inform treatment options for the patient. The other tests that we request of the patient are imaging, so that I think best practice and the most sensitive tools are an MRI of the pelvis, which allows us to correlate images of the tumor and what it is involving. We correlate that with what we have been able to examine with the patient. And then the most sensitive tool for evaluating whether that cancer has gotten into another part of the body is a PET-CT.

Now, PET-CT is a special kind of CT scan. A CT scan can be adequate in super early cancer diagnoses. However, most patients diagnosed with cervical cancer deserve to have a PET-CT as that’s the most sensitive tool, meaning, again, an oversimplification, but it means it’s most accurate. It’s our best chance at not missing something. And we want all of the information possible to lay out a treatment plan that meets the specific patient’s needs. A PET-CT is different from a regular CT scan, because patients get a contrast through their veins. That contrast is made up of sugar, and the sugar has a little radionucleotide connected to it. And that’s helpful to radiologists and to clinicians, because cancer is not very efficient at metabolizing sugar. And the sugar will linger in cancer cells, and the little radionucleotide on the sugar makes that cancer light up on the screen.

Using those tools, the exam, the biopsy, the MRI, the PET-CT, we assign a stage, and we talk to the patient about what treatment is, one, most likely to lead to cure, and two, what’s most appropriate for the patient and their goals. Now, in the case of a recurrence, there are different tools that we use, and it’s highly variable upon what the patient experienced with her diagnosis up front and how not only the tumor responded to the treatment but how the patient responded to the treatment. And so I bring this up because my action tip for this topic is that when you are completing your treatment at the time of diagnosis, I want you to ask your doctor for your treatment summary.

A treatment summary is in layman’s terms, meaning language that any of us can understand that describes to you what your diagnosis was, it recaps the treatment that you experienced, it explains what impacts that treatment could have on your health, and it outlines what your surveillance strategy should be. So I want to be clear that a patient is a survivor the moment they are diagnosed with any kind of cancer. That being said, there is a significant change in the patient experience when you complete treatment.

With your oncologist, the emphasis is going to be on surveillance, and that surveillance is going to mean, in the case of cervical cancer, it’s going to mean that ideally you are being seen by a gynecologic oncologist every few months for the first couple of years. Those visits should include a pelvic exam. The reason I emphasize the importance of a gynecologic oncologist here is that your body is never the same after cancer treatment.

And in your ongoing surveillance, you want your provider to be someone who is experienced with taking care of patients who have experienced what you have been through so that they can help you understand what your new normal is, what isn’t normal for you, etcetera. There are other tests that we sometimes do. Sometimes we do cytology or scrapings at the top of the vagina, and sometimes we do CT scans or PET-CTs, but it’s all very dependent upon what the person experienced at the time of diagnosis.


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How Does the Stage of Cervical Cancer Impact Treatment and Prognosis?

Early stage versus advanced stage cervical cancer are different, but how does the stage impact treatment and prognosis? Expert Dr. Shannon MacLaughlan from University of Illinois discusses how the diagnosis changes treatment approaches and proactive advice for patient care. 

[ACT]IVATION TIP

“…understand with your provider how your stage influences your treatment…ask about if it’s pertinent to you are one, is there a role you are a candidate for surgery, ask what kind of surgery is best for you? Should it be a minimally invasive surgery, or should it be a traditional surgery with a larger incision?…depending on how old you are at the time of diagnosis and where you are in building a family, ask about fertility preservation options…in the case of early disease or early stage, there can be fertility preservation options that you may need to ask about, rather than wait for your oncologist to volunteer the information…if your doctors say that radiation is right for you, please ask them if the radiation doctors also do something called brachytherapy.”

 

Related Programs:

How Does Cervical Cancer Differ From Other Gynecological Cancers?

How Does Cervical Cancer Differ From Other Gynecological Cancers?

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what does it mean to be diagnosed with cervical cancer at an early stage versus advanced cervical cancer?

Shannon MacLaughlan:

So any cancer will be assigned a stage at the time of diagnosis. And the stage construct is really for providers and researchers to put clinical scenarios into boxes. An oversimplification is that a stage I cancer is confined to the organ where it starts. In this case, the cervix is its own organ. Even though it’s technically part of the uterus, it is its own organ for purposes of staging. The highest, it’s always on a scale of I to IV. So stage IV cancer is a metastatic disease where it has spread to multiple locations. In general, a stage I cancer has a higher survival rate than a stage IV cancer. And that’s true for any cancer that you look at.

So in the case of cervical cancer, someone in an early stage, which typically when we’re talking about early stage cervical cancer, it’s usually stage I. We might clump I and II together, but in simpler terms, in simpler normal language, that means that the tumor is small and it’s confined to a specific location, which makes it easier to deal with, frankly. So the difference between being diagnosed at early stage and late stage means one, the chances of cure are higher, and two, how you and your clinical team move forward with treatment is going to be different.

There’s broadly speaking, there are three different tools that we use in cancer care. One is surgery, radiation, chemotherapy, or I shouldn’t say chemotherapy, I should say systemic therapy or treatment that treats the whole body. And there can be a role for any of those things or a combination of those things in treatment. A very small, early stage I cervical cancer may be cured with surgery alone, whereas an advanced cervical cancer is not, that patient is not likely to receive surgical excision as part of their treatment for curative intent.

My [ACT]IVATION tip is to understand with your provider how your stage influences your treatment. The specific things I want you to ask about if it’s pertinent to you are one, is there a role you are a candidate for surgery, ask what kind of surgery is best for you? Should it be a minimally invasive surgery, or should it be a traditional surgery with a larger incision? Related to that, depending on how old you are at the time of diagnosis and where you are in building a family, ask about fertility preservation options. There aren’t options for everyone.

But in the case of early disease or early stage, there can be fertility preservation options that you may need to ask about, rather than wait for your oncologist to volunteer the information. And then the third piece, the third specific question is if your doctors say that radiation is right for you, please ask them if the radiation doctors also do something called brachytherapy. Brachytherapy is a specific kind of radiation that it’s an integral part of successful treatment for cervical cancer.

Lisa Hatfield:

Okay, thank you. So just to follow up on that point that you made about possibly needing systemic therapy, maybe surgery, maybe radiation, for patients watching this, does that mean that a patient could possibly have a medical oncologist, a radiation oncologist, and a surgeon? Could it…is it possible to have a team of doctors working with them on their cervical cancer treatment?

Shannon MacLaughlan:

Not only is it possible, it’s important. A gynecologic oncologist like myself is someone who is trained…we train in obstetrics and gynecology first, and then we do subspecialty fellowship training in gynecologic oncology so that a gynecologic oncologist who is board-certified is trained and capable of doing the surgeries for gynecologic malignancies as well as the chemotherapy or systemic treatment.

Now, oftentimes we partner with a medical oncologist to give the systemic therapy, but the most important piece is that a gynecologic oncologist evaluates you at some point early in your diagnosis before treatment begins. The second part of your question is that radiation oncology is its own subspecialty. And so, oftentimes gynecologic oncologists and radiation oncologists work together. Unfortunately, sometimes that means going to multiple different locations to get the different kinds of doctors, but we do know that a multidisciplinary approach is an important approach for success.


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How Does Cervical Cancer Differ From Other Gynecological Cancers?

What are the ways that cervical cancer varies from gynecological cancers? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the cervix versus uterus, cervical cancer causes and risk factors, and proactive patient advice.

[ACT]IVATION TIP

“…don’t consider yourself a statistic. People have been cured. People have been treated successfully and gone on to lead very productive, healthy lives. And right now, you should assume that you’re that person.”

 

Related Programs:

How Does the Stage of Cervical Cancer Impact Treatment and Prognosis?

How Does the Stage of Cervical Cancer Impact Treatment and Prognosis?

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, as a baseline, what is cervical cancer, and how does it differ from other gynecological cancers, and is it curable?

Shannon MacLaughlan:

Thank you, Lisa, for the opportunity to explain this. I want to first explain what a cervix is and why it gets cancer. The cervix is the outlet of the uterus and the uterus is the womb. So most commonly, folks know about the cervix when they’re thinking about the labor process. The cervix is what has to dilate for the baby to be delivered. So it sits at the top of the vagina. The cervix, in order to do its function, it is constantly changing. Each time there is a monthly cycle, it changes in composition, it changes in cell types, it changes in products that it makes, and it’s built to be able to remodel itself constantly.

And all of that change is an opportunity for mutation, and mutations are opportunities for cancers. Cervical cancer specifically is caused by the HPV virus. There are lots of different kinds of the HPV virus, but there are a handful that cause cancers. And when those HPV viruses get exposed to the cervix through the vagina, then they can cause specific mutations that can lead to cancer. Now, most often, a person’s immune system will fight off that virus and fight off the virus’s cellular changes that it causes that can lead to cancer.

But if someone’s immune system isn’t working perfectly, or if there are other things going on, for example, smoking is a big risk factor for developing cervical cancer because it impacts the immune system, then over time, that HPV infection can turn into a cervical cancer. Now, it’s different from other gynecologic cancers because it’s caused by a virus, and that makes it preventable in some ways with vaccines and screening programs, unlike the other gynecologic cancers, which just to review, gynecologic cancers are cancers of female reproductive parts, uterus, cervix, fallopian tube, ovary, vulva, vagina.

And for the purposes of discussing cervical cancer, the cervix is its own organ. Now, any cancer, when diagnosed early, has a chance, a cure that’s much higher than if the cancer is diagnosed in more advanced stages. But if I have to answer curable in a yes or no format, then I’d say yes. Depending on the stage of diagnosis,  it may not be the statistically most common outcome for it to be cured, but human beings are not statistics. And my [ACT]IVATION tip for this topic would be, don’t consider yourself a statistic. People have been cured. People have been treated successfully and gone on to lead very productive, healthy lives. And right now, you should assume that you’re that person.

Lisa Hatfield:

Thank you. I love that [ACT]IVATION tip. 


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Why Should Endometrial Cancer Patients Engage in Their Care?

What role do patients play in their endometrial cancer care and treatment decisions? Gynecological cancer expert Dr. Nita Karnik Lee explains the shared decision-making process and discusses the benefits of engaging in conversations with your healthcare team. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

 

Related Programs:

What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection


Transcript:

Katherine Banwell:  

Would you define shared decision-making, Dr. Lee? Tell us why it’s so important for patients to engage in their care.  

Dr. Nita Karnik Lee:  

Shared decision-making is sort of the idea model, right? It’s this idea that we want to, as physicians, know what values my patient has, and I want to be able to impart information that I think will be helpful for them to make a decision. Sometimes the decisions are do I want to do surgery or not? Sometimes the decision are do I want to do chemo or continue chemotherapy? Those are very different decisions, and shared decision-making is a way of saying we’re going to have some kind of communication back and forth where I’m like, hey, this is what I think is happening. These are the choices that you have.  

And you telling me, okay, these are the things that I’m worried about. These are the things that align with what I want to do. I think it’s really important, though, to not have physicians put it out as, oh, well, I just let the patient decide, right, because just like when my car breaks down or my lights don’t work at my house and I get an electrician to come and see, I have no idea what they’re talking about.  

I have no concept. I really rely on them to say, well, I don’t know what kind of wire for you to use in my house. I have no idea. So, we really want to be careful that shared decision-making doesn’t turn into a menu of choices that we, the physicians, are actually giving up their role in advising if that makes sense. A lot of shared decision-making is in that relationship of trust and saying I really get this. I get what you’re telling me.  

I have patients, for example, who are on chemotherapy for a recurring disease, either uterine or ovarian cancer, and a lot of times you’re making these decisions of, okay, quality of life, like, what are events that are coming up? Sometimes they don’t always align with what I think is best, but if somebody tells me, you know what, I’m going to do these three cycles, but my son’s wedding is coming up. And I really need a month off beforehand, that aligns for me because I think that’s important, but maybe it’s not the standard.  

And so, kind of really knowing your patient, from my perspective, and also, as patients, not being afraid to say these are my values, and this is what’s really important to me. People will hear it, and they’ll feel better equipped to be able to help you guide those decisions with the caveat that sometimes I’ll say, look, you know what, I’m pretty worried about you. Yes, let’s give you a month off before, but let’s scan right after the wedding and see what’s going on.  

And then we can decide what we’re going to do after that. Or holiday times are oftentimes where I really give people sometimes a break. If they’ve been on chronic chemotherapy, sometimes this is a time where I’d say I’m really worried. I don’t think we can give you a break. People will tell me I know you’re worried about me, but this is really important. And we work together on it. I think it’s knowing the medical background, and then making sure you know what your patient wants, from that perspective.  

Katherine Banwell:  

And having an open line of communication. 

Dr. Nita Karnik Lee:  

Yes. 

Katherine Banwell:  

That’s what you’re saying. 

Dr. Nita Karnik Lee:  

Exactly. I think you hit it on the nail. Having an open line of communication, and not feeling that you need to hold back from that. I think it’s much easier for our whole team. I work really closely with our nurses and PAs, and sometimes one of the nurses will be like, you know what, she really wants to talk to you about this. Sometimes it’ll be maybe not even talking to your doctor first, but talking to the person on your team you feel closest to, to say I’ve been really thinking about this. I know Dr. Lee wants to do this, but this doesn’t align with my kid’s graduation, or my grandkid’s something, and those things are really important to get that open.

Tools for Improving Access to Quality Endometrial Cancer Care

What proactive steps can endometrial patients take to access the best care? Gynecological cancer expert Dr. Nita Karnik Lee walks through self-advocacy steps that may encourage improved patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

 

Related Programs:

What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection


Transcript:

Katherine Banwell:  

How is the medical community dealing with these disparities? How are they handling them? 

Dr. Nita Karnik Lee:  

You know, I think a lot of it is, again, sort of educating. You have to think about you want patient education. You want provider education. Sometimes I have patients who come to me and say, you know what, I reported these symptoms to my doctor, and they said it was nothing, or they told me it was a UTI. So, we often think about, when we’re making an intervention, we want to make sure that providers who are seeing patients first-line are also hearing about this as in their differential diagnosis, and that patients have enough knowledge that they feel really comfortable advocating for themselves. Many of our patients who are cancer survivors will tell us. 

Or when they speak on their own in different ways or say listen to your body, make sure you’re advocating for yourself, and if somebody doesn’t listen, find another doctor. I hate to say it, but you just have to know that those are things that happen. I think structurally, as providers, we have to be really aware of our own biases that we bring to patients and their families and our own health system.  

How are we set up to help people more? I think a lot of it is quick access to care. And so, I think that’s where we try to make some differences in terms of both policy and policy within a health system, and then larger policy that’s kind of maybe more not just one hospital, but statewide or nationwide.  

Katherine Banwell:  

You mentioned advocating for oneself and how important that is. If a patient feels like they’re not receiving good care or they’re being treated unfairly, what steps should they take to access better overall care? 

Dr. Nita Karnik Lee:  

Well, I mean, a little bit of it’s complicated, because so many of us are kind of limited by our insurance. We don’t always have the ability to do all the things. It can be scary, and it can be intimidating. I think one of the things that could be very helpful is to prepare yourself with a list of questions, to be like these are the questions. These are the things that I’m not feeling are being heard, and potentially even getting a second opinion. You can say this in a way that you can sort of feel like your doctor doesn’t need to feel bad. 

I even think second opinions, for me, I’m all for them. More information is better. That’s a way of positing it and saying, look, I know we’ve gone through these symptoms. These are my concerns. I don’t think they’re being addressed, and I would really like to get another opinion. Physicians are often like, yes, get another opinion. And so, those are ways that I think people can find the right fit for the physician that they want. 

What Are Common Endometrial Cancer Health Disparities?

How can a patient’s individual circumstances impact the quality of their endometrial cancer care? Gynecological cancer expert Dr. Nita Karnik Lee reviews common health disparities and their impact on patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

 

Related Programs:

Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

Current Endometrial Cancer Treatment Approaches

Current Endometrial Cancer Treatment Approaches


Transcript:

Katherine Banwell:  

Dr. Lee, disparities in healthcare can impact a patient’s experiences and their outcomes. What are common health disparities that gynecological cancer patients can face? 

Dr. Nita Karnik Lee:  

Yeah, this is really – I always think about the cancer care continuum. This is the model that I think of. I think of what is risk reduction and prevention? What is early diagnosis and getting to the right person to take care of your cancer? Did you get the right treatment? And then did you get the right follow-up? 

Disparities can happen along those ways, and some of it can be related to access to care. Access, oftentimes, people just think it’s insurance, but it’s not. It is insurance. That’s a big part of it. We know that our states that don’t have as much insurance support for our patients who are poorer actually do worse. There’s worse survival. 

But I think it’s also does the person feel comfortable with the healthcare system? Are they connected with their doctor? Is it a language issue? Is it a bias issue that they’ve felt that they haven’t been comfortable in their health system before? All of those things can create these roadblocks along that whole cancer care continuum. Access really means more than just like it has to be acceptable. It has to be available. 

It has to be something that the person can feel comfortable with when they make a decision about treatment. That’s where we see things like people say, oh, that person declined surgery. I’m like, but did they really decline? Why did they decline? Did anyone get into what they were worried about, what their experience had been? So, we can’t just blame the patient and say, oh, they just didn’t want treatment. It’s really a complex area. The biggest disparity we see is in uterine cancer. 

So, Black women are much more likely to die of uterine cancer at any stage, especially older Black women. Some of this is access, but some of this is that there are actually differences in biology, and it’s kind of tricky because nobody thinks there is. Race is really a construct, right? It’s not really a biological difference, but there are differences in the types of more aggressive cancers that Black women get, and there are a lot of different reasons that people have started to look at that, both genetically, but also environmental influences, stress influences. 

So, the biggest disparity is probably in the uterine cancer, but unfortunately, we still see disparities by race in ovarian and cervical cancer. We also see disparities by income and insurance type. And so, I think those are kinds of things that are just the larger picture. 

What Questions Should You Ask About Endometrial Cancer Detection?

Gynecological cancer expert Dr. Nita Karnik Lee explains the importance of self-advocacy in endometrial cancer detection, including speaking up when you have concerns and seeking care early. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from DETECT Ovarian Cancer

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Advances in Endometrial Cancer Detection

Advances in Endometrial Cancer Detection

How Does Biomarker Testing Impact Endometrial Cancer Screening and Detection?

How Does Biomarker Testing Impact Endometrial Cancer Screening and Detection?

Current Endometrial Cancer Treatment Approaches

Current Endometrial Cancer Treatment Approaches


Transcript:

Katherine Banwell: 

What questions should patients be asking their doctor about detection? 

Dr. Nita Karnik Lee:  

For uterine cancer or endometrial cancer, detection is really based on symptoms. If there are any of those symptoms that are happening, they really should be asking, hey, I need to see a gynecologist. I need to do a biopsy. We do, unfortunately, see many patients who are sort of told, oh, it must be fibroids. But that shouldn’t happen in post-menopausal patients. I’ve heard everything. I’ve heard patients sort of self-reflect, and say, you know what, I was stressed that day, or I moved the couch that day. I’ve heard all the different things we think about, because none of us wants to feel like there could be something wrong. We often justify. It was probably nothing.  

But the patients who do the best are the patients who have a spotting episode, they have a bleeding episode, they seek care right away. And then 80 percent of uterine cancers need only surgery, so that’s a good statistic compared to some of the other GYN cancers. I would say advocating for your symptoms, not being afraid of a symptom being worked up, because I think there’s a lot of fear with, if you report something, maybe it will be something.  

And getting over that sensation of it may not be. It may be something completely different that’s benign. But I think the earlier that we can see a diagnosis and get people to treatment and/or hysterectomy, that tends to do the best in terms of survival and just getting over this episode.