Advocacy 101 – What I Learned from Training

I learned so many new things today at Patient Advocacy Orientation! My best days are when I’m learning new things. It’s one of the things I love best about being a scientist, and it’s a great foundation upon which to build for my new work as a Patient Advocate.

What exactly are advocates and what do they do? In terms of Research Advocacy Programs, advocates are disease survivors (cancer survivors in my case), caregivers, and members of the community who provide the patient perspective to researchers to help shape the nature and direction of cancer research and patient care. Their role is critical, as they serve as a voice for patients, helping investigators tailor their research with patients concerns in mind – not just in terms of outcomes and sound science, but also in terms patient comfort, respect for patient rights and dignity, and beneficence. This means making sure the goals of research are focused on and aligned with serving patient needs and improving outcomes and quality of life.

This seems pretty intuitive, and I believe most investigators are truly committed and passionate about doing research that will make a difference, be it developing new treatments, better diagnostic tools, reducing side effects of existing treatments, and improving survival and quality of life for patients. I certainly was and am. But most investigators don’t experience what patients do – except in cases like mine where researchers become patients and survivors. My experience certainly changed my perspective, which is why I want to share what I’ve learned with both the research and survivor communities.

That mission became more urgent for me today in the face of some jarring statistics. Tennessee and the surrounding regions have some of the highest cancer death rates in the United States.

Link to source.

Comparing the map above to the map below that shows new cancer cases diagnosed by state, incidence, the frequency with which cancer occurs, doesn’t fully explain higher death rates.

Link to source.

My heart sank when I saw these data, and really drove home my privilege. I am well-educated, have a high socioeconomic status, have access to insurance coverage and some of the best health care available in the United States, and I have inside information based on my work as a breast cancer researcher.

I’m lucky. Far too many of my fellow Tennesseans and Southerners are not. My Institution and Affiliated Cancer Center serve this region. I want to be a part of better serving patients in this region, which will be a HUGE focus of my advocacy work.

What will this work involve? One of the ways I think I can be of use is by helping recruit patients for clinical trials. According to what I learned today, many promising new drugs do not make it through Phase III clinical trial testing* due to failure to accrue enough patients to sufficiently test their effectiveness. That’s such a shame and missed opportunity. Of course, there are many barriers for patient participation in clinical trials – fear/lack of understanding; lack of access due to barriers to travel/transportation, unmet childcare needs, inability to take time off work, etc.; disparities that make minority populations reluctant to participate**. While I am not in a position to combat access to trials, I am in a position to serve as a liaison between patients and clinical researchers accruing patients for trials. I can help educate potential trial participants in the process, assure them of their rights (including the ability to stop participating at any time), alleviate fears through helping patients understand the benefits and how they might be helping a great number of future cancer patients. I am also working with African American advocates and other advocates of color to understand and be sensitive to those communities, their histories, and their needs.

Those needs are great, particularly in terms of breast cancer outcomes. African American women diagnosed with breast cancer have lower overall survival rates compared to white women. Finding out why is crucial for closing the gap. Increasing African American participation in clinical trials is a key part of that process.

Link to source.

For more on cancer disparities across ethnic groups, click here.

Bottom line: I’ve got work to do, and I’m excited to work with my fellow survivors to help patients now and in the future. Interested in becoming an advocate? Here are some resources that can help! My Institution’s Advocacy Resources, How Patient Advocates Help Cancer Research: Expert Q&A, Why Patient Advocacy is Vital.

*I’ll cover clinical trials in more detail in a future post. Click here to learn more now. Phase III trials test drugs that have already been proven safe and promising in terms of effectiveness.

**African Americans remember the horrific abuses perpetrated by scientific investigators, including those in charge of Tuskegee Study of Syphilis – which resulted in hundreds of African Americans being denied treatment in order to study the long term effects of untreated syphilis

Do clams get cancer? Questions from High School Freshmen

One of my favorite outreach activities is volunteering at public schools. Over the years, I’ve had the opportunity to speak to and work with elementary, middle, and high school students – doing everything from dry ice demonstrations, mini anatomy labs with fixed mouse organs, microscopy labs with tissue sections, and career talks. Most recently, I visited a local MNPS high school to talk about cancer biology (click here to see the slide show and an explanation).


First of all, I was super impressed by how much these young people already knew! They’re studying cell biology and cell division right now, which worked well for my talk about how errors in DNA replication, mutations, and failed repair after damage leading to amplifications and deletions contribute to cancer. We used cell cycle regulation as an example, talking about oncogenes (drive cancer growth) and tumor suppressors (normal braking system for growth – lost in many cancers) that encode cell cycle regulators. They already knew much of the background, including how the cell cycle is controlled, the steps involved, and some of the proteins that regulate it. They also knew a lot about carcinogens (e.g. cigarette smoke, ultraviolet radiation from the sun, certain chemicals), treatments (chemotherapy and radiation), and certain types of cancer including breast, lung, and colon cancer.

Secondly, they were engaged and asked a LOT of questions. It made the presentation much more fun and interactive, and it gave me quite a bit to think about. There were, of course, questions I could not answer off the top of my head. But I promised the students I would look up answers to their questions and send the answers to their teacher. These are some of those questions:

1. What is the rarest form of cancer?

The latest statistics I could find from the American Cancer Society are from 2017. According to the data they gathered, the rarest cancers diagnosed in the adults (20+ years old) in the United States include cancers of the trachea, Kaposi sarcoma (this one is interesting because it led to the discovery of HIV – when more of these cancers cropped up in young gay men in the 1980s, it led investigators to start studying this population to identify the cause), lip, nose cavity and middle ear.

2. Can cancer in a transplanted organ spread to a new host?

Photo credit Deposit Photos

This has actually happened! In 2018, it was reported that a 53 year old woman who died from a stroke and had no known medical conditions at the time of her death (including screens for cancer) had her organs transplanted into at least 5 recipients. The patient who received the heart died shortly after transplant from unrelated causes, but a year and a half later, the patient who received lungs from the donor became ill and was found to have breast cancer cells in her body with DNA that matched the original donor. She died shortly after. The patient who received the donor’s liver developed breast cancer in the transplanted organ in 2011, was treated, but died of a recurrence in 2014. The patient who received the donor’s left kidney developed and died from breast cancer in 2013 (six years after transplant), and the patient who received the donor’s right kidney was diagnosed with breast cancer in his kidney cells in 2011 – they were able to remove the tumor from the kidney, and after treatment the patient lived 10 years cancer free (at the time of reporting).

This phenomenon is very rare, however, and most of the time cancer in a potential donor can be detected by screening before organ harvest.

3. Do clams or reptiles get cancer?

Photo credit Vale’ Tamblay

Apparently, clams do get cancer. Even worse, for at least one type of cancer, the cancer cells from one clam can travel to another clam through water and grow in the new host. Yikes!

Cancers have been documented in reptiles, but they are much more under-studied than mammals and other animals. More research may be done to better study the link between cancer and metabolism, since metabolism is lower/slower in ectotherms (cold blooded creatures) than endotherms (warm blooded creatures).

Interestingly, elephants and naked mole rats rarely, if ever, get cancer, and ongoing studies into their physiology and genetics could help us figure out why and how we can use the knowledge to prevent cancer in humans.

4. Can babies be born with cancer?

It is rare, but it can happen. There have been reports of babies born with neuroblastoma, leukemia, and teratomas.

5. When did people start getting cancer?

(I actually knew part of the answer to this one, but it was fun to dig a little deeper)

Photo credit Deposit Photos

The world’s oldest recorded case of cancer came from ancient Egypt in 1500 B.C., and it was recorded that there was no treatment for the cancer, only palliative treatment (relief of pain and suffering). Cancer has been with us much longer, though, given that bone cancer (osteosarcoma) has been detected in fossils from early hominids dated to 1.7 million years ago. Similar tumors have been found in fossils from dinosaurs and even from ancient turtles that lived 240 million years ago!

Got any questions for me? Send them! I’ll do my best to find the answers and more information. Knowledge is power! Hit me with your burning questions – the weirder the better!