How to Ensure You Receive Quality Care as a Black Pancreatic Cancer Patient

doctor and woman in hospital discussing pancreatic cancer

Everyone deserves an equal opportunity to fight back against pancreatic cancer. However, according to The American Cancer Society, the five-year survival rate for Black pancreatic cancer patients is 2% lower than it is for white patients. This disparity may be traced back to larger issues within our healthcare system and society in general. But, until changes are made, Black patients must continue to advocate to ensure they get the care they deserve. In this article, let’s discuss some of the barriers commonly encountered by Black patients and what you can do to combat these obstacles.

If you are interested in learning about the statistical disparities faced by Black pancreatic cancer patients, please read our blog on the subject.

Receiving the Right Care for You

A pancreatic cancer diagnosis deserves all the care and consideration a patient requires. During Black History Month, Project Purple wants to shine a spotlight on the experience of Black patients by acknowledging the disparities in care that contribute to their increased risk for pancreatic cancer. 

However, we want to express that if you or a loved one is affected by pancreatic cancer, you are not alone in your battle. Your outcome and personal journey are not defined by data sets or statistics – your situation is unique to you and these statistics do not determine your survival as an individual. There is hope.

However, for the larger global community, it is important to highlight the discrepancies in care for Black pancreatic cancer patients in order to fight for a world without pancreatic cancer for everyone. Here are some tips to ensure you get the best possible care despite these discrepancies and barriers. 

Getting a Second Opinion

One of the biggest obstacles Black patients can face is accessing the proper care. According to a study published by the National Library of Medicine, Black patients specifically are at a disadvantage during the initial diagnosis process. The article states that Black patients are less likely to consult with a specialist or oncologist after their initial diagnosis. Additionally, if Black patients did receive a consultation, they were less likely to pursue treatment after that conversation. 

Receiving a second opinion, especially from a medical oncologist or other specialist can play a role in improving your pancreatic cancer prognosis. According to Loyola Medicine, a second opinion allows patients to not only get a fresh, unbiased interpretation of their condition but also helps them further investigate the best treatment plan for them. It can also give patients a chance to connect with a new doctor and hospital; one that they might prefer working with over their primary physician, according to the American Society for Clinical Oncology (ASCO)

Investigating your options for care can help you proceed confidently with treatment. For more information on how to get a second opinion, please feel free to read our blog on “Why A Second Opinion Can Help Pancreatic Cancer Patients.” 

Finding the Right Treatment Plan

Researchers have also observed that Black patients may not always be receiving the same level of treatment for their condition. According to a study published by the National Library of Medicine, Black patients were less likely than white patients to undergo a pancreatectomy, a sometimes life-saving procedure for pancreatic cancer patients where the pancreas is removed from the body. Despite both white and Black patients having similar diagnoses, the study found that Black patients were less likely to be recommended for the procedure than their white counterparts. This data suggests that pancreatectomies and other surgical procedures may be underused by the care teams of Black patients. 

A second opinion is the first step to combating this obstacle as well. If you ever feel you are not receiving proper care, you are well within your right to seek out either alternative treatments or physicians. Getting another doctor to examine your condition can help you get the clearance you need for these life-saving procedures. 

To ensure that you are receiving the best care possible, after getting a second opinion, you should also look for a high-volume center if you do want to receive surgery. A high-volume center or hospital is a place that has performed many Whipple procedures. According to Duke University Health Center, undergoing the Whipple procedure, or any other curative surgery, at a high-volume center decreases a patient’s risk of complications. 

Information to Help You Through Your Pancreatic Cancer Journey

One of the best things you can do for yourself as a patient or caregiver is to educate yourself on the steps you need to take throughout your pancreatic cancer journey. This will not only help you combat these barriers, but it will also help you feel more confident as you proceed with treatment. There are several resources on the Project Purple website for you to use that contains information on multiple topics related to pancreatic cancer: 

There are also several programs that patients can take advantage of to help them through their journey. Our Patient Financial Aid (PFA) program offers assistance to families in an effort to ease the financial burden of cancer. We recently expanded our PFA program to provide food assistance to patients and their families. This program provides healthy and convenient meals to our patients and their families so they can further focus on recovering from pancreatic cancer.

Lastly, our Blankets of Hope offers blankets to patients to show that they are not alone in their battle against pancreatic cancer. For more information about how Project Purple can help, please visit our patients and families page: 

Diversity in Pancreatic Cancer Research

Several studies also suggest that African Americans have been left out of many pancreatic cancer research studies. Research is an invaluable tool for studying all cancers, especially pancreatic, where many aspects of the disease are still being examined by researchers. Leaving Black patients out of the research pool prevents them from reaping the full benefits of research. 

Part of what contributes to pancreatic cancer’s lower survival rate is the fact that most patients are diagnosed when the disease is already in its later stages. According to the American Cancer Society, because the pancreas is so deep inside the body, symptoms rarely appear until the cancer is in its later stages, which makes early detection such an important area of research.   When detected early, patients have a significantly better chance of survival. 

One of the main ways that pancreatic cancer researchers are making advances is through studying the BRCA-2 gene mutation. This gene mutation has been known to significantly increase someone’s risk of developing pancreatic cancer

Though there have been few studies surrounding Black pancreatic cancer patients’ prevalence of the BRCA-2 gene mutation, there have been multiple studies revolving around Black breast cancer patients and the mutation. A study from the National Library of Medicine found that Black breast cancer patients were more likely to carry the BRCA-2 gene mutation versus the BRCA-1 mutation. This leads researchers to speculate that more genetic testing needs to be done for these patients, as they are at a greater risk of developing the mutation. 

However, most of the BRCA-2 testing has been conducted on only white patients. A study published by the National Library of Medicine states that Black patients were rarely present in BRCA-2 studies. The study pooled several different research projects and found that Black patients only made up about 3.6% of the population surveyed. 

If you or a family member has been diagnosed with pancreatic cancer, Project Purple urges you to consider undergoing genetic testing, as it can help patients discover more information about their cancer diagnosis and potentially help their family members. For more information, please visit our blog on the BRCA-2 mutation with Amy Moy

Collecting biospecimens is another effective way of studying a disease. A biospecimen is a quantity of biological matter, such as tissue, blood, or urine that is then studied by researchers. One study published in the National Library of Medicine states that generally Black patients are not properly represented in biospecimen studies, meaning that very little research has been tailored towards Black patients and their specific needs. If you are comfortable with participating in research studies, please consider speaking with your doctor about getting involved in a project. 

Clinical trials are one of the many types of research projects that can not only help benefit the larger pancreatic cancer community but can also help the patients themselves. One way Black patients can help increase representation in studies is by looking into clinical trials as potential treatment plans. Before searching for any clinical trial, please discuss the decision with your doctor. Your healthcare team not only needs to stay up to date on your treatment plan, but they can also be a great resource when it comes to finding the right study for you. For more information on clinical trials and how to become involved in these studies, please read our blog on the subject

Every patient deserves the best care and support possible

These are just some examples of barriers that Black patients face when it comes to combating a pancreatic cancer diagnosis. However, acknowledging the disparities present in pancreatic cancer care is not enough. Larger systemic changes must be made to make sure every patient is receiving the care they deserve. However, until these changes are made, there are several ways that Black patients can advocate for themselves and their families. No one should have to feel alone as they go through a pancreatic cancer diagnosis. Remember, you are worthy of care, compassion, and survival.

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