Request Demo

Blog

Read more from our thought leaders.

Joan Venticinque, PAC member

Joan Venticinque, PAC member

As a two-time cancer survivor and advocate, Joan brings her first-hand experience augmented by the experiences of others to provide the patient perspective to research studies and the PAC. Professionally she has worked in cancer patient support and serves as an advocate member on numerous funded research grants and scientific review committees.

Recent posts by Joan Venticinque, PAC member

6 min read

No One Should Walk a Cancer Journey Alone/Lessons from My Father

By Joan Venticinque, PAC member on Oct 7, 2020 4:39:35 PM

In 2020, over 276,000 American women and 2,600 men will be newly diagnosed with breast cancer. For these individuals, Breast Cancer Awareness month is especially poignant. Those hearing  the words ‘you have cancer’ quickly realize the importance of having a support network as they move through diagnosis, treatment, and survivorship.

PAC Breast Cancer Awareness blogI had the pleasure of interviewing Dolores Moorehead who has supported cancer patients for over 30 years. Dolores Moorehead, BS, MS, APCC, is the Lead Client Navigator/Multicultural Client Support Clinician, at the Women’s Cancer Resource Center (WCRC) in Berkeley, CA. The WCRC offers free services to people diagnosed with cancer, with a focus on those who are low-income, people of color, and members of the queer/trans community. Among her many roles, Dolores facilitates the Sister to Sister support group for African American/Black women diagnosed with cancer. Prior to joining WCRC in 2002, Dolores worked as the Patient Services Manager at the American Cancer Society for more than thirteen years. 

 

     Dolores, what drove you to work in cancer support?

     Dolores:  I can say that one of the things that really drove me to work in this field was the         fact that my father was diagnosed with Hodgkin's lymphoma when I was 14, and culturally       my younger sister and I were not allowed to tell anyone. Also, as a teenager I was afraid         that my father would die and I did not have a place to talk about it. When I started working       in cancer support, I realized how important it was for patients to never walk a cancer                 journey alone and that they needed to have someone with whom to share their story. I am      dedicated to do my best to provide that attentive ear with the resources, help and support        that patients need.

 

     How do you approach supporting the women in your community?

     Dolores: When I chose to work in mental health, I realized it was important to look at the           cultural relationships of my clients because relationships are how many people of color             build trust. It is also important that I look like them and let them know that mental health is       important. To truly support someone, I look at all aspects of someone’s identity, not just           race or gender. It is their religious or spiritual beliefs, their educational background,                  disabilities, visible or not, and what has impacted them in life. I strive to see that person for      who they really are. 

 

    “I think it's important to admit that they are the experts of their life,        you aren’t, so asking rather than assuming, and also                              acknowledging if they say something and you don't really                      understand what it means, be big enough to say, ‘I haven’t heard          that before, can you explain it to me’. This is a way to build trust”

 

     In October we seem inundated with pink ribbons. How do women in your community                 who’ve had an experience with breast cancer feel about Breast Cancer Awareness Month?

     Dolores: From my experience, African American survivors have really connected with pink       ribbons and breast cancer awareness month and that’s good. For me, I consider how I             utilize that month to educate people about breast cancer. I remind them that breast cancer       occurs throughout the whole year and that while it gets highlighted in October, it's                     important to take the message of awareness and continue it year-round. 

 

     The Covid-19 pandemic has exposed existing racial disparities in health care. With your           experience in navigation and supporting patients, what steps do you see that need to be         taken in order to increase participation of people of color in clinical trials?

     Dolores:  While there is more awareness now about the importance of getting individuals         of color to participate in clinical trials, recruitment really hasn’t changed. One of the things       that I've really thought about is how do you bring individuals that you want from the                   community on board? How do you make them feel comfortable? How do you let them               know their words and thoughts are important? You can do this by mentoring community           members, tell them you understand this is new to them, yet, YOU make them feel                     important because they are. That will make an impact. 

     These community members can go out to their faith-based communities, sororities, and           other community venues and teach others about cancer research. People learn about             research and clinical trials from a trusted  individual who is a part of their group and looks         like the people they are serving. It all comes down to building trust.

 

    “I think it's important for researchers to know their community and        then to pull the gatekeepers from that community so people will            realize, oh, she is like me and I can trust what she's saying.” 

 

      You have to do the groundwork first. It’s important for researchers to be willing to come to        the community and be willing to hear those hard ‘Whys’. Why are you here? Why do you          want to do a study on us? It is really empowering to an individual to be able to ask the              questions. For communities of color who have not felt empowered, it’s important to let              them know they have the right to ask questions and receive answers. Then when the                study is over, the most important step for researchers is to return and share the                        information, and what is going to happen next. 

 

    “I really think that it is important for the researcher to acknowledge         the history of clinical trials in people of color, for example, the              Tuskegee Airmen study and Henrietta Lacks, and explain that this        will not happen again, and this is how they are different.” 

 

     One thing that’s true whether I am supporting women with breast cancer or talking to folks       who may be clinical trial candidates, is that we have to meet them where they are and we         have to be quiet, sit back, have humility and listen even when it becomes uncomfortable. It       is only then we can understand the community and build trust.

 

I want to thank Dolores for taking her time for this interview and for her tireless work in supporting women with breast cancer. Breast Cancer Awareness month is more than just cancer awareness especially for people of color. As Dolores has stated, it is understanding people’s cultures, beliefs, relationships and history. It is listening to their stories, answering their questions and above all empowering them to be partners not only in their healthcare but as important contributors to clinical trials.

 

This interview has been edited and condensed for clarity.

Topics: Breast cancer awareness
3 min read

Prostate Cancer Awareness Month: Navigating an Increasingly Complex Disease

By Joan Venticinque, PAC member on Sep 14, 2020 10:56:38 AM

prostate-awareness-month-1

During September, Prostate Cancer Awareness month draws attention to prostate cancer screening and those living with the disease. Over the years, my grandfather, father, and four close friends have received a prostate cancer diagnosis. Their ages range from 40s to their 90s and their diagnoses varied from early stage through metastatic disease. For all of them, their diagnosis was both unexpected and distressing. They were fearful and overwhelmed at the prospect of being asked to take a more active role in their treatment decision-making, often without understanding the diagnosis, treatment plan, or prognosis.

–“I have seen three different doctors, and all recommend a different treatment plan. How do I know what to do?” –Jeff

There is so much confusion about screening and treatment for prostate cancer. “I’ve heard measuring PSA is not an accurate test.” “It’s slow growing, so why worry?” “They say all men will have it [prostate cancer] in their lifetime, so why go to the doctor?” “How will the different treatments effect my sex life?” The array of available treatments varies widely from surgery to radiation, anti-hormonal medication, immunotherapy, gene therapy, and watchful waiting. What do patients believe and how do they decide what to do? These questions demonstrate the need for clinical trials that provide the answer of the ‘right’ screening and treatment for the ‘right’ patient.

–“I did as much research as I could and had two second opinions. I found a clinical trial for a new type of radiation treatment. I was glad I did. It was important that I found the right treatment for myself.”–Jack

New Treatment Options as a Result of New Screening Modalities & Therapies-graphic

 

Clinical trials play a vital role in moving new screening modalities and treatments to patients. Recent screening trials have included combining magnetic resonance imaging (MRI) with ultrasound for more accurate prostate biopsies. This method can increase the detection of high-grade prostate cancers while decreasing detection of low-grade cancers that would not progress. New imaging techniques also include using a PET scan that looks for a specific protein called prostate-specific membrane antigen (PSMA) found on prostate cancer cells.  The ability to detect very small amounts of metastatic prostate cancer could help doctors and patients make better-informed treatment decisions.

Targeted Therapies for a Complex Disease in the Age of Precision Medicine

Targeted therapies based on PSMA, the same protein that is being tested for imaging prostate cancer, are being studied for radiation treatment.  The molecule that targets PSMA is chemically linked to a radioactive compound. The new compound can potentially find, bind to, and kill prostate cancer cells throughout the body.

 Over the last few years, several new approaches to hormone therapy for advanced or metastatic prostate cancer have been approved for clinical use. Many prostate cancers become resistant to standard hormonal treatment over time. After successful trials, three recently approved drugs have been shown to extend survival in men with hormone-resistant prostate cancer.

Current trials are using immunotherapies that work with the immune system to fight cancer. These therapies can either help the immune system attack the cancer directly or stimulate the immune system in a more general way. Currently, vaccines and checkpoint inhibitors, two types of immunotherapy, are being tested in patients with prostate cancer. 

–“I relied on my doctors for my treatment plan, but it wasn’t until I joined a support group and realized everyone was different with different choices, including clinical trials, that I felt more comfortable with my decisions.” –Larry

 

right_decisions+treatments_patients_medable_dct

 

My family members and friends eventually all made their treatment decisions. Given their age differences and goals for their therapies, each one had a different treatment plan. Although my grandfather is gone, others live with side-effects. Still, others are on treatment for the rest of their lives without much in the way of side-effects. All benefited from patients who participated in clinical trials. Without clinical trials we may never understand what the ‘right’ screening and treatment will be for the ‘right’ patient.

 

Topics: decentralized trials PAC RareDisease prostate cancer cancer awareness