Tag Archive for: stage iv

A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma

A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

What does the future of renal medullary carcinoma (RMC) care look like? Expert Dr. Nizar Tannir shares his perspective on the progression of RMC care, issues that still need advocacy, and his hopes for the future.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“So, my hope and my plea is for all of us to work together to realize this dream that I hope I will see before I die and before I retire, that RMC deserves the support, not only RMC, but all aggressive, rare tumors require and deserve the support from funding and equal healthcare access.”

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Transcript:

Cora:

Dr. Tannir, you’ve dedicated your life to patients like my brother Herman, and we are so grateful for your genius and that of your colleagues, what is your hope for the future of RMC?

Dr. Tannir:

Cora, it’s been a privilege, an honor to have been with Herman and you on his journey from April 2012 and today, April, we are in April 2023, 11 years. He came with stage IV, and it took several months trying to get to a place that will take his symptoms and his diagnosis, seriously, get to the bottom of it and initiate therapy urgently. I am so happy for the outcome that Herman has achieved with your support, I could not think of how he could have done it without you on his side. You have dedicated, in fact, I know you have three sons, you’ve raised three wonderful young men, but you had Herman always.

So my hope is Herman’s success story. Herman triumph over RMC, will not be just one singular story that we talk about, but that story, I hope will be the common story we will tell about other patients with RMC. It will require research. It will require funding for the research, it’ll require raising awareness. It’ll require working with our policy makers, our congress, members of Congress and administration to open the gates, remove the barriers for patients with RMC, who are in this country, who are U.S. citizens, to allow them the care that members of Congress get that I get and I can get at MD Anderson any time. I think it is important, it’s not just important to have the tools, the scientific tools, the research tools, but also if those tools, if those clinical trials are not made available to people with RMC who need it in every city and town in the United States, well, how good our tools are if they can be only offered to only a few.

So, my hope and my plea is for all of us to work together to realize this dream that I hope I will see before I die and before I retire, that RMC deserves the support, not only RMC, but all aggressive, rare tumors require and deserve the support from funding and equal healthcare access. We really need to remove those disparity barriers. But from the scientific research and medical standpoint, I really see that we have seen a sea of change over the past 10 years and more so over the past five, six years. We are confident that we can, we can with a red pen mark, cross that RMC I hope in the next few years.

I know we can do it, there has been, So much excitement about RMC, whereas 10 years ago when Herman was diagnosed, not too many people were excited or interested or knew about RMC and what to do, now many, I can say many investigators in the U.S. and in Europe and other places are interested. They’re doing research. They’re applying for grants on RMC. So I am optimistic, I am glad. I look back and I see that all that hard work, and I think Herman is a beacon, a bright light in this dark field that has been dark field RMC, that light that has shone it was shining, and you’re helping there to lead to improvement. I can tell you, Cora, that patients with RMC now have a much better chance of surviving many years compared to years ago when they only had a few months to live. Now people are living two, three, four, five, and seven years, and 10 years and longer. So progress has been made, but there is more…more progress to achieve towards the cure.

I am confident that we will conquer RMC in the future. It takes a village. It takes the world to do it, and I am happy to see that we have made that progress. So thank you for all the support you provided to all those patients. Not just your brother, but all these people who contacted you to get guidance and wisdom from you and for sending many of those my way and to MD Anderson. So it’s my privilege and honor to have been at MD Anderson in this field to be able to have helped your brother and help other patients with RMC together, we will do it, we will conquer RMC. 


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The Role of Immunotherapy for Metastatic Breast Cancer or Relapse

The Role of Immunotherapy for Metastatic Breast Cancer or Relapse from Patient Empowerment Network on Vimeo.

Breast cancer treatment may involve immunotherapy or targeted therapy, but what do patients need to know? Expert Dr. Demetria Smith-Graziani discusses the roles of immunotherapy and targeted therapy and shares questions for patients to ask their doctor about immunotherapy.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

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“…ask your oncologist about the standard of care or clinical trial options for the use of immunotherapy for your cancer, and if it would be beneficial to do any testing on your cancer to assess the benefit of immunotherapy.”

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Transcript:

Lisa Hatfield:

Dr. Smith, what is the role of immunotherapy or targeted therapy in breast cancer, specifically those whose cancer has relapsed or is in advanced stages?

Dr. Demetria Smith-Graziani:

Currently, we are using immunotherapy mostly for triple-negative breast cancer, for early stage breast cancer, that is not stage IV breast cancer,  we use immunotherapy sometimes in combination with chemotherapy for higher risk, triple-negative breast cancers to help reduce the risk of it coming back in the future.

We also use immunotherapy for metastatic or stage IV triple-negative breast cancer, specifically those cancers that are positive for a protein called PD-L1, we are also doing a number of clinical trials across the country and the world to figure out other situations in which we can use immunotherapy, whether without chemotherapy to treat other types of breast cancer, and my activation tip for patients is ask your oncologist about the standard of care or clinical trial options for the use of immunotherapy for your cancer, and if it would be beneficial to do any testing on your cancer to assess the benefit of immunotherapy.


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How Does Hormone Therapy Impact Breast Cancer Treatment?

How Does Hormone Therapy Impact Breast Cancer Treatment? from Patient Empowerment Network on Vimeo

For breast cancer patients who have been on hormone therapy, what do they need to know? Expert Dr. Demetria Smith-Graziani explains how hormone therapy works, when it’s  most often used in the treatment process, and recommended questions for patients to ask their doctor.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

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“…ask how long their formal and therapy is recommended and what potential side effects there are of their treatment.”

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Transcript:

Lisa Hatfield:  

Dr. Smith, many women are on or have been on hormone therapy. How does hormone therapy play into breast cancer treatment?

Dr. Demetria Smith-Graziani:

Okay, so for breast cancers that feed off hormones in your body, specifically breast cancers that are positive for the estrogen and progesterone receptors, we use anti-estrogen therapy to treat the breast cancer. And these are medications that lower the amount of estrogen in your body so that it no longer provides that food source to be cancer cells, and they will not grow and develop in the same way as if there is estrogen present.

We usually use this hormone therapy or anti-estrogen therapy after you’ve had treatment such as surgery or radiation or chemotherapy, and we usually keep patients on those medications for anywhere from five to 10 years to help reduce the risk of their breast cancer coming back up to 50 percent.

We also use hormone therapy for patients with stage IV or metastatic breast cancer as part of their long-term treatment, so my activation tip for patients is to ask how long their formal and therapy is recommended and what potential side effects there are of their treatment.


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Breast Cancer Staging: An Expert Explains

Breast Cancer Staging: An Expert Explains from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about staging? Expert Dr. Demetria Smith-Graziani explains breast cancer staging, parts of the body that can be involved, and recommended questions for patients to ask their doctor.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

[ACT]IVATION TIP

“…ask what stage your breast cancer is, ask if it is potentially curable and also ask what the risk is of your breast cancer coming back after it’s treated.”

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Transcript:

Lisa Hatfield:

Dr. Smith, a cancer diagnosis can be overwhelming, it is overwhelming. Can you speak to staging, and more specifically, what is early breast cancer, or EBC?

Dr. Demetria Smith-Graziani:

Sure. So we assign breast cancer a stage from zero to IV, and that’s based on the size of the cancer itself and whether that cancer has spread to other parts of the body, as well as other factors like how the cells look under the microscope and what proteins we see in the cancer or cells. So we consider early stage breast cancer to be any stage that is lower than stage IV, so to zero through IV, stage zero breast cancer is also called DCIS which stands for ductal carcinoma in situ, and that means that the cancer cells are just in the milk ducts and have not spread beyond those milk ducts.

Stage I, II and III, cancers are spread beyond the milk ducts to the surrounding breast tissue, and they may have also spread to the lymph nodes under the arm or in the chest, and the higher stage breast cancer you have, the higher that number, the higher the risk is of your breast cancer coming back after the treatment is completed.

Now, stage IV breast cancer is cancer that started in the breast but has spread to other distant organs like the lungs or the liver or the bone, we also call this metastatic breast cancer, stage IV breast cancer, unfortunately, can’t be cured, but we can still treat it. So my activation tip for patients is ask what stage your breast cancer is, ask if it is potentially curable and also ask what the risk is of your breast cancer coming back after it’s treated.


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How Is Breast Cancer Staged?

How Is Breast Cancer Staged? from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about staging? Expert Dr. Bhuvaneswari Ramaswamy explains clinical staging and discusses common breast cancer genetic mutations.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

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Transcript:

Katherine:

Dr. Ramasamy, how is breast cancer staged?

Dr. Ramaswamy:          

The breast cancer is usually staged by using couple of things. One is clinical staging. So, when you come in with the initial you feel a lump and you get a mammogram. So, we will stage you by   understanding the size of your tumor in your breast as well as whether we are able to palpate your lymph nodes. Second, we, you know, the imaging. What we feel as a size is usually a little bit   overestimated when we look at the mammograms or  the MRIs that you have. And then we’ll see whether in the – in those imagings whether your lymph nodes are looking abnormal. So, we use these initially to do clinical staging. But then when we go to surgery, that’s when we do the correct   pathological staging because now, we know exactly your tumor size. Then they do what’s called a sentinel lymph node biopsy.

We don’t need to take all the lymph nodes to stage your nodal status anymore. We just use this   methodology in the surgery, in this – during surgery  to just pick out those nodes that is draining your tumor back. And whether they’re positive or not. In general, as long as you don’t have a very locally advanced cancer, we don’t need to do staging scans to stage you for breast cancer. But in case you are unlucky enough to have cancer spread in those, and we do scans and you have cancer either in your bone or liver or lung, then that is a higher staging, and that’s what’s called the stage IV cancer.

Considerations That Help Guide Breast Cancer Treatment Decisions

Considerations That Help Guide Breast Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

What are key factors that help guide breast cancer treatment decisions? Expert Dr. Bhuvaneswari Ramaswamy explains what is considered and explains the significance of each factor.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

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Transcript:

Katherine:

Another key component of thriving is finding  a treatment that is right for your disease. What are the considerations that guide a treatment decision?

Dr. Waks:

Yeah, great question. So, what we just talked about,  the two things that are very important for us to make a decision, and that’s where we have come far in the last 20, 25 years, is because we are not just taking the staging.

That is anatomical staging, meaning what’s the size of your tumor and the lymph node involvement. We use those. That is important for us because that obviously changes the risk. The higher the stage, the higher risk of   recurrence. The higher the risk, we have to do more treatment to get a benefit, right? So, that’s one side. But what we have come to understand is biomarkers  are very important. That is biology of your tumor.

So, the grade, how quickly it’s proliferating although it’s not a biomarker, but it tells us a lot. And then the three important biomarkers we talked about ER, PR, and HER2. Those all are important for us to make a decision. In addition to that, we do something called a genomic testing called Oncotype  DX assay. There is also another test called   MammaPrint. These are genomic testing.

That is, we look at some of the genes that are up or downregulated in your tumor to decide whether you  are going to benefit for something called   chemotherapy or maybe just targeted therapies enough. So, these are some of the factors that we use to make a decision.

Now, do we use age and your performance status? Meaning how well you are? Do you have   comorbidities? Do you have bad diabetes? Do you have heart disease? Yes, they all go into that whole treatment decision, but the primary is made out of biomarkers and genomic testing and anatomic, and the rest are additional factors that go into our decision-making.

Katherine:

Yeah. What about metastatic disease? Are the considerations different when it comes to treatment?

Dr. Ramaswamy:

It is a little bit different because the first thing that we have to understand is when we are seeing them in stage I, stage II, stage III, which is stage IV is metastatic, stage II – we – our goal is a curator. We are trying to really throw the kitchen sink, although that’s really not what we do. We are trying to still be  tailored therapy, but we are trying to do everything we can to prevent a recurrence.

But now when you have a stage IV disease that is the cancer has   spread, that is the horses have left the  barn in the breast and has gone and settled in distant  organs and gone, our goal is to try to contain the disease. So, prevent further progression, prolong the  life and survival, and also improve quality of life. So, there are those consideration.

The biomarkers still go into consideration. We ensure we biopsy the metastatic site and look for those biomarkers. We do the genomic testing, gene sequencing of this. That will also help with our decision-making. We, of course, look for clinical trials because new novel therapies are always more important, but these are the other factors. And, of course, performance status that is how well you are,  how well your organs are functioning, and what’s your age, and how that affects your morbidity. All of those are also important.

Recent Advances in Treating Breast Cancer

Recent Advances in Treating Breast Cancer from Patient Empowerment Network on Vimeo.

What are the latest breast cancer treatment and research advances? Expert Dr. Bhuvaneswari Ramaswamy shares treatment updates for specific breast cancer types and discusses testing for circulating tumor DNA.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

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Transcript:

Katherine:

Are there emerging therapies that are showing promise?

Dr. Ramaswamy:  

Oh, my God. There’s just tremendous emerging therapies that are showing extraordinary progress. And I talk about this to my patients all the time. I mean, I tell them like two years ago say in a patient with – patient with metastatic disease, I’ll say, last year this drug wasn’t approved.

This drug is now approved for you to be given, and it shows extraordinary effect. So, every year we have new drugs getting approved, and we are also trying to get it used to be a little bit of a richness on the HER2-positive disease. And now we are seeing definitely a lot of richness on hormone receptor-positive disease. And I think we’re starting to see some new particular immunotherapy and other targeted therapies showing some response in triple-negative breast cancer.

Now, I know that’s a place that we still need to see more newer therapies, but overall, in the stage IV setting, we have really many options to keep them in good quality of life and longer. But people will ask, “Really, why do I even need to get to stage IV?” Really look at me and improve the curative setting. And that again, we are able to pick the higher risk patients, what me – what it means to have higher risk disease, how do we target them, newer drugs to target them. So, I think in so many ways we are doing better. And we are also getting to a place can we detect higher-risk patients, not just  by their initial diagnosis and response, but follow them sequentially by circulating tumor cells?

And we are getting to that place where we can actually do circulating tumor DNA, so just isolate the DNA, and we know what will belong to the tumor. And then circulating tumor cells seemingly even after your curative therapy. And so that is something that’s getting approved. And so we are not only seeing treatment, but we are also trying to see better detection of that reference. So, I think we are in so many ways, improving. And I am – I’ve been in this for 20 years, some of the things that thought was a dream is coming true. So, truly just keep living well and keep thriving. There are options.

Katherine:                     

Yeah. That’s, it’s positive.

Dr. Ramaswamy:          

Yes.

What Treatment Options and Factors Should Be Considered for Endometrial Cancer?

What Treatment Options and Factors Should Be Considered for Endometrial Cancer? from Patient Empowerment Network on Vimeo.

Endometrial cancer treatment options take different factors into account, but what are they? Expert Dr. Ebony Hoskins explains key factors that play into treatment decisions and shares advice to be proactive in your care. 

Dr. Ebony Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center.

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“…asking your doctor based off the stage and grade, ‘What is the standard of care?’”

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Transcript:

Mikki:

Dr. Hoskins, please walk us through a treatment option for endometrial cancer by stage, and what other factors should be considered when making treatment, the decisions?

Dr. Ebony Hoskins:

So this question used to be so easy where I would say, okay, if you had stage I, if someone is diagnosed with stage I, they don’t need any further treatment. If they have stage two, they may need radiation. Stage III and IV, typically chemotherapy and radiation. And I think what makes the difference in this question now is that it all depends not just in stage, but the type of cancer or the grade. So it’s one is the extent of disease. And the second question is the type of cancer. So some there could be a higher risk endometrial cancer, that’s early stage where we may need to give chemotherapy.

So I think my activation tip for this question would be asking your doctor based off the stage and grade, “What is the standard of care?” We always want standard of care, because that’s a golden standard in terms of treatment. And looking at all the options are into that care. Usually standard of care is either usually one, maybe two options. And I think looking at the whole scenario in terms of the patient, any other side effects that they may have, medications or diagnosis.


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Understanding Stages of Ovarian Cancer: What Should Patients Know?

Understanding Stages of Ovarian Cancer: What Should Patients Know? from Patient Empowerment Network on Vimeo.

What are the ovarian cancer stages, and what do patients need to know about them? Expert Dr. Ebony Hoskins provides an overview of the stages and explains why they are important in both diagnosis and treatment planning.

Dr. Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center. Hoskins sees women for gynecological malignancies, which include the treatment of endometrial, ovarian, vulva, vaginal and cervical cancers.

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“…for patients with a stage of ovarian cancer, understanding what the stage is, what organs that were involved, and kind of the plan of attack.”

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Transcript:

Mikki: 

Dr. Hoskins, what are the stages of ovarian cancer, and why is it important for treatment planning?

Dr. Ebony Hoskins:  

Well, stages of ovarian cancer, typically we stage cancers in four stages. Stage I, I would look at it very generally as a disease, confined to the ovary. Stage II is disease that’s in the pelvis, kind of below the pelvic bones in that area. Stage III can be disease in the lymph nodes or in the upper abdomen. And when I think stage IV for any disease, I think metastatic disease or distant metastases. So someone who may have an ovarian cancer and now we see liver lesions, that is a stage IV. Someone who may have an ovarian disease, ovarian cancer that is now in the lung, that’s stage IV. So those are the way I look at it I, II, III, IV. In terms of treatment planning, we look at that and there’s data that look and say, “What are the best options for treatment in someone?” It depends on their stage and the grade. And that’s all kind of important in terms of treatment, but as well as for prognosis. So my activation tip for patients with a stage of ovarian cancer is understanding what the stage is, what organs that were involved, and kind of the plan of attack.


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What Are the Noted Disparities in Lung Cancer Screening and Access?

What Are the Noted Disparities in Lung Cancer Screening and Access? from Patient Empowerment Network on Vimeo.

What are some lung cancer disparities in the U.S.? Dr. Lecia Sequist shares insight about disparities in lung cancer screening and care, some causes of the disparities, and ways that advocacy groups are trying to decrease disparities. 

Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.

[ACT]IVATION TIP:

“…be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done.”

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How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma


Transcript:

Lisa Hatfield:

Thank you. Dr. Sequist, with cancer care, there are some noted disparities, particularly with access to screening and care. What are some of those disparities with lung cancer screening and care?

Dr. Lecia Sequist:

Lung cancer, unfortunately, there are a lot of disparities around the globe, but even if we focus on the U.S., there’s a lot of regional disparities as far as who’s getting cancer, who’s getting lung cancer, where the cancer treatment centers are located, where the screening is available. Lung cancer screening is really effective as far as finding cancer in the earliest stages. It’s not equally available across the country. Some of it has to do with there are certain states that expanded their Medicaid coverage as part of the medical care reform that happened about seven, eight years ago, and there are some states that didn’t expand the Medicaid, and then that situation translated into whether lung cancer screening was easy to get started in hospitals in that state. So there are some regions of the country, and a lot of them are in the South as well as the Western U.S., where if you want to get lung cancer screening, you may have to travel more than 30 miles or even more than 50 miles in order to get lung cancer screening.

There’s lots of activists and patient advocacy groups that are working to try and fix that problem so that anyone could have access to lung cancer screening within a reasonable distance of where they live, but there’s a lot of barriers. Similarly, there are barriers to getting genetic testing performed. We know that doing genetic testing on a lung cancer, it can be really helpful, especially if you have adenocarcinoma, the most common type of lung cancer, getting genetic testing done to see if there are targeted therapies that can be used to treat the cancer is a really important step in the diagnosis, but not all patients are having that done. And as you might imagine, there’s disparities, racial disparities in who’s getting these tests ordered and who is not having that testing done. And so it is important. My activation tip for patients would be to be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done. 


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[ACT]IVATED DLBCL Resource Guide en español

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What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma?

What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma? from Patient Empowerment Network on Vimeo.

What is the diffuse large B-cell lymphoma (DLBCL) system called Ann Arbor staging? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains how DLBCL differs from other blood cancers and symptoms that characterize each DLBCL stage.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

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“…make sure they really understand their scan and what stage they are, and how that impacts the treatment that the doctor is offering.”

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Transcript:

Lisa Hatfield:

I know as a blood cancer patient, my number one question is, what stage do I have and what is my prognosis? So can you explain the staging system a little bit, I think it’s called the Ann Arbor staging system for DLBCL and then maybe prognoses that you may or may not feel comfortable giving to each patient.

Dr. Nirav N. Shah:

Yeah, so lymphoma is a little bit different, because it’s a blood cancer that involves lymph nodes, and so how we stage it is based on the location and the number of lymph nodes involved, if, for example, you had one lymph node in your neck, and that’s all you had, we would consider you to have stage I diffuse large B-cell lymphoma. If you had more than one lymph node, but on the same half of the body, thinking of your diaphragm as sort of a midpoint, we would then consider you to have stage II disease. If you have lymph nodes on both halves of the body, we would then consider you to have stage III disease, and if you have organ involvement, so bone marrow involvement, liver involvement, kidney involvement or lung involvement, we consider those patients to be stage IV.

Now, to a certain degree, the higher the stage, the worse the prognosis, but as I stated earlier, even patients with stage IV lymphoma can be cured, and that’s different than other cancers, right? When we think about stage IV colon or stage IV breast, many of those patients, we actually tell them that they’re in a non-curative setting, and so while the prognosis for stage III and IV is a little bit worse than those patients who have stage I to II disease, I do try to focus on that we do treat with curative intent, and we do alter our treatment regimens according to the stage of disease that they present with, and so my activation tip for patients in this setting is to make sure they really understand their scan and what stage they are, and how that impacts the treatment that the doctor is offering. 


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How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient?

How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient? from Patient Empowerment Network on Vimeo.

How do diffuse large B-cell lymphoma (DLBCL) experts explain this cancer to newly diagnosed patients? Expert Dr. Nirav Shah shares his perspective on how he leads patients through their diagnosis and treatment phases and key points that he shares to educate his patients.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

[ACT]IVATION TIP:

“…learn as much as they can about this diagnosis and take notes, because I know that often patients in that first visit don’t really register everything. Just because they’re feeling overwhelmed.”

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Related Resources:

What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma

What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma

How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions

How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions

Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients

Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients


Transcript:

Lisa Hatfield: 

Okay. So, Dr. Shah, you have a patient that comes into your office newly diagnosed with DLBCL, maybe from their…or they’ve heard it from their primary care provider, they understand, they looked it up on the Internet, diffuse large B-cell lymphoma, they see the lymphoma, I would anyway, I’d see lymphoma, and I know it’s cancer. What’s included in your initial evaluation, how do you explain in basic terms to a newly diagnosed patient what DLBCL is? 

Dr. Nirav N. Shah: 

Yeah, great question, Lisa. I think that any time somebody gets that diagnosis with a cancer label on it, it’s incredibly overwhelming, and so what I try to do when I see my new patients is first simply just learn about them. How did this come about, what symptoms led to this diagnosis? Learn about their past medical history, which impacts how I might treat them and what options I’m going to give them, and sort of learn about who they are a little bit, learn about their family, what they do for a living, because I think those are important values to know about your patients, when trying to make a treatment decision.

What I try to explain to these patients is that DLBCL, yes, it is a cancer. Yes, it is, unfortunately, an aggressive cancer, one that can be very rapidly growing, but unlike a lot of cancers, it is a curable type of cancer, and I really try to highlight that like all cancers, unfortunately, not every single patient is cured with diffuse large B-cell lymphoma, but initially, I think there’s reason to have optimism and hope because the goal is, for me, when I meet a new DLBCL patient to provide a curative intent treatment approach for them.

As a part of that initial evaluation, we need to know more about where their disease is and in lymphoma. We often use a PET-CT, which is a special type of scan that sort of lights up areas that can be involved with lymphoma. In some cases, we do a bone marrow biopsy, although that is less indicated now because of how good the PET scans are, and then we talk about other testing, a lot of the chemotherapies can cause problems to your heart, so we often do an ultrasound of your heart to make sure it’s healthy enough to be able to tolerate some of the regimens that we consider for this disease, and then we talk about access in terms of how are we going to get the chemotherapy into the patient, and whether or not they would need a device like a port. But the main focus of the conversation is explaining the disease, teaching about the disease and focusing on that unlike other cancers, even stage III or IV diffuse large B-cell lymphoma is a curable entity, and the key is moving promptly getting the workup done in an efficient but complete manner and then initiating a treatment plan. 

Lisa Hatfield:

Right, thank you. And if you had one tip for patients when they first come in, what would you tell this patient that’s coming to see you in? 

Dr. Nirav N. Shah:

Yeah. I think my activation tip would be to learn as much as they can about this diagnosis and take notes, because I know that often patients in that first visit don’t really register everything. Just because they’re feeling overwhelmed.


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Tools for Accessing Quality Prostate Cancer Care

Tools for Accessing Quality Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What factors could impact a prostate cancer patients access to quality, affordable care? This animated video reviews common obstacles and provides tools and resources to help address barriers to care.

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Related Resources:

Living With Prostate Cancer

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi! I’m Anthony, and I’m living with advanced prostate cancer. This is Niki, my nurse.  

Just like prostate cancer doesn’t behave the same way in every patient, each prostate cancer patient has different factors that could impact their access to quality, affordable care. 

Niki: 

Exactly, Anthony. There are obstacles that may affect their potential to manage their cancer.    

These barriers, which are also called health disparities1, are complex and may include things like:  

  • Not having health insurance – or having limited insurance. 
  • Experiencing racism and discrimination. 
  • Language barriers if English is not the language you are most comfortable with2. 
  • Cultural barriers. 
  • Experiencing financial constraints. 
  • A lack of sick time or paid time off in the workplace. 
  • Living in a remote or rural area with limited access to care. 
  • Or, a lack of education or health literacy. 

Anthony: 

And overcoming or addressing these barriers is the goal of health equity.  

Niki: 

Right! EVERYONE should have the access to quality care. And while it isn’t possible to solve these problems overnight, there are resources and support services to help people with prostate cancer. It is important to identify and to discuss your barriers with your healthcare team as they are unique to each individual patient. 

Anthony: 

First and foremost, as we’ve mentioned in prior videos – don’t hesitate to speak up if you feel you are receiving unequal care. You can consider changing doctors if you don’t feel you’re receiving fair treatment, or if you’re not comfortable with your team. 

But the burden to access better care shouldn’t fall on you. Your team is there to help, right, Niki? 

Niki: 

That’s what they are there for! And the best place to start is by reaching out to a nurse navigator or social worker on your team. They may work with you and identify any challenges in your way and offer support resources to guide you in the right direction.  

Anthony: 

Exactly – my social worker helped me find an organization that provided transportation to and from my treatment appointments.  

Niki, are there other services that a nurse navigator or social worker help you connect with? 

Niki: 

Absolutely – let’s walk through some examples: 

  • There are resources that can help with the financial strain of cancer care. Patient assistance programs are in place for people who don’t have health insurance or who are underinsured. They are managed by government agencies, pharmaceutical companies, and advocacy groups; and, in some cases, these programs can help cover the cost of medications or provide them at a discounted rate.
  • Team members who provide emotional support are available to help you such as a social worker, counselor, therapist, or psychologist. 
  • If language is a barrier, translators can be made available to join appointments with you, so you can actively participate in your care discussions and decisions.  And you can ask for materials in the language you are most comfortable with. 
  • And if your job is affecting your ability to get care, many advocacy groups have resources that can support you in advocating for your rights in the workplace. 

Anthony: 

Those are all wonderful support services, Niki. 

I also want to add that if you are having trouble understanding your disease, advocacy groups have excellent materials in patient-friendly language. Download the guide that accompanies this video for a list of recommended organizations. 

Niki: 

That’s right. And, many medical centers have patient advocates available to help you communicate with your team, so you can get the care you need and feel confident in your decisions. Remember, you are not alone! 

We hope this video helped you feel more empowered to ask for resources. Thanks for joining us! 

Anthony: 

And visit powerfulpatients.org/pc to access more videos with Niki and me.