Tag Archive for: decision-making

What Are Renal Medullary Carcinoma Noted Disparities?

What Are Renal Medullary Carcinoma Noted Disparities? from Patient Empowerment Network on Vimeo.

What are the disparities seen in renal medullary carcinoma? Expert Dr. Nizar Tannir explains how grassroots movements are so important in rare diseases like renal medullary carcinoma and his hope for equitable policy change. 

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

“My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen and I hope it will happen in the near future.”

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How Can Patients With Sickle Cell Trait Lessen RMC Risk?

How Can Patients With Sickle Cell Trait Lessen RMC Risk?

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?


Transcript:

Cora:

Dr. Tannir, what are the noted disparities seen in RMC and what are some of the actions being taken?

Dr. Tannir:  

RMC affects predominantly African Americans in this country. Unfortunately when you say African American and healthcare, in the same sentence, there it is, there is healthcare disparity. Healthcare disparity is a fact we live in, is something I face all the time in our citizens who are minorities, people of color in this country, whether they’re African American or Hispanic or other citizens.

Unfortunately, they don’t have the same healthcare access to like other patients, like other individuals. So that right there is a healthcare disparity. We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.

They have to have access. The same way I have access, if I got cancer, I have access to clinical trials at MD Anderson. A patient with RMC should have that same equal healthcare access. I hope that this, it takes a village, as they say, it takes a village for all of us to work together, it’s not going to happen overnight this is going to be grassroots like you, Cora, are doing, grassroots movement from the ground up. Healthcare policies will change only when all the citizens in this country realize and believe that healthcare is a right, it’s not a privilege, it is a right, it is a right. The most important right is health, life high, this is important so the only way we can achieve that is when we believe as a country, as citizens of this country, that we’re all equal, God has created us equal. We have to have access to healthcare. My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen, and I hope it will happen in the near future. 


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Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) treatments are starting to expand, but where do things stand? Expert Dr. Nizar Tannir provides an update about current RMC treatment options and his perspective about RMC research and hope for emerging treatments.

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

“…patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

How Do You Explain RMC to Newly Diagnosed Patients and Families?

How Do You Explain RMC to Newly Diagnosed Patients and Families?

Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

Advice for Newly Diagnosed Renal Medullary Carcinoma Patients


Transcript:

Cora:

Yes. How do you work with your RMC patients to make treatment decisions? What should RMC patients consider when deciding on treatments?

Dr. Tannir:

It’s always a partnership, Cora, this applies actually not just for RMC, not just between a physician, an oncologist like myself, and a patient with RMC. It is the partnership between every patient and every and their physician. They are treating oncologists, whether it’s RMC or any other kidney cancer type, or any cancer type, or any other health issue. It’s a partnership built on trust, built on knowledge and so the role of the physician is to explain to the patient their diagnosis, the prognosis, the treatment options, give them the facts. Patients need to be informed that’s why we have the informed consent when we offer a therapy. Informed consent is based on the physician or medical provider providing the information about the treatment, what benefits are, what potential complications or adverse events we call these. And the patient has to be aware of these things and they need to participate in their care.

And the decision-making is joint, it’s partnership. That’s the empowerment that we as physicians should give to our patients. They should be empowered in their care, empowered to know their disease, and they should know their disease very deeply. And only then that relationship is cemented through the trust, mutual trust, then the physician will offer the patient the treatment or treatments, there may be more than one treatment and it’s our role to go through these treatments and look at pros and cons. This treatment will offer you this, the treatment will offer you that. I think I can’t underscore more the importance of clinical trials. Clinical trials are important the treatment we are testing today may be experimental today, they may be the standard of care tomorrow.

So it’s important for individuals to see that participating in a clinical trial is not an experiment. Just we’re using subjects or human beings as guinea pigs it’s not, it is for their benefit because the results, the findings of the trials could directly or indirectly help those patients who participate in trials, but also help future patients. So participating in trials will not only help them, but help others after them. My activation tip is patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure. 


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How Treatment Side Effects Impact Mental Health and Decision-Making

Cancer is a long, hard road that no one wants to travel down. When it strikes you, though, being strong is no longer an option, but a necessity. You are probably prepared for the physical impacts of this life changing diagnosis, such as chemotherapy, radiation, and surgery.

What you might not expect, though, are the impacts that your treatment can have on your mental health and decision-making.

Depression and Anxiety

If you are going through chemo, you probably braced yourself for the nausea and fatigue that you knew would accompany your treatment. Once you were in the midst of it, however, you may have found that the mental and emotional impacts of chemo treatments are as great as the physical ones, if not greater.

It’s not difficult to understand why. The treatments themselves are inherently stressful, but what you may find even more distressing is how the treatments disrupt your daily life. These disruptions often occur not only on infusion day, but also on the days leading up to and following treatment.

In other words, you might quickly begin to feel as if your entire life is revolving around your chemotherapy, whether you are preparing for your infusion or recovering from it. You may mourn the loss of your daily routine. Your fatigue may interfere with your ability to work, take care of your home, or simply do the things you enjoy. All this can contribute to feelings of anxiety and depression.

The good news, however, is that there are things you can do to manage your emotions and nurture your mental health, even in this challenging time. This begins, above all, with giving yourself permission to feel what you need to feel, to grieve when you need to grieve, or to be angry when you need to be angry.

At the same time, getting stuck in these dark emotions isn’t good for your physical or mental health. That’s why it’s essential to track how you are feeling and to know when and how to seek help when you need it.

Daily journaling can help you process your emotions, while leaning on your support group can provide the comfort and the perspective you need to move through them.

Expecting the Unexpected

One of the most challenging aspects of the cancer journey from a mental health perspective is how unpredictable it can be. It’s difficult to prepare for a challenge, after all, if you don’t know what’s coming.

For example, vision problems are a common but often unexpected side effect of cancer treatment. Many patients experience dry eyes, eye pain, and blurriness as a result of their treatment. This can further increase emotional distress not only because such visual impacts can compromise your daily functioning but also because vision and mental health, research is increasingly showing, are deeply interconnected. Indeed, the brain’s visual processing centers lie primarily in its deepest structures, many of which are also responsible for emotion and mood.

Treatment and Decision-Making

When you are in the fight of your life, and you are truly feeling all the physical and emotional impacts of that fight, it’s not only your mental health that may be undermined; you may find it difficult to make rational decisions. When you are worried, fatigued, and sick, your brain simply cannot process information as efficiently or well.

You might find yourself, for instance, making rash and unwise decisions, or you may find yourself unable to make any decision at all. This is why it is important to surround yourself both with friends and family and with healthcare providers you trust.

Such a support network can help guide you through choices that you may be unable to make on your own when the treatment side effects have sapped your energy, stolen your focus, and deflated your mood.

Indeed, because your support network is so important when you’re undergoing treatment, you may find yourself needing to make some major decisions even before your treatment journey begins. For example, if you live in an isolated, rural area, you may determine that it is best for your physical and mental health to relocate, at least temporarily, to the city.

Living in the city can ensure that you have consistent and easy access to your entire healthcare team, including mental healthcare providers. Not only can this make treatment easier when you’re feeling especially tired or unwell, but such proximity to your trusted team can enable you to feel more confident and comfortable with your care, mitigating some of the stress you feel and enhancing your ability to make sound decisions.

The Takeaway

The cancer journey is a scary one, but it does not have to lead to despair. The key is learning how the journey, including your treatment, can impact your mental health and your decision-making. Armed with such knowledge, you can take the steps you need to nurture your mental and emotional well-being even as you fight to recover your physical health.