We spoke with Basser Young Leadership Council member Savannah Campbell and her father, Andy Campbell, to hear more about their family’s personal journey with BRCA-related cancer.
After feeling some unfamiliar abdomen pain, Andy Campbell scheduled an ultrasound to help determine if he had a gallstone. When his doctor called after the visit to report the ultrasound findings, Andy learned that the ultrasound did not show a gallstone but showed liver lesions instead. This unexpected news was shocking for Andy to hear, and he immediately began to look for answers. While his doctor explained to him what liver lesions were, Andy thought to himself, “Well, liver cancer is bad, but at least it’s not pancreatic cancer!”
Two days later an MRI confirmed that he had stage 4 pancreatic cancer.
What was it like to learn that a BRCA1 or BRCA2 gene mutation could be passed down through your family. Did you know it could be carried by a male?
Savannah: For our family it was more of a matter of learning that there were hereditary cancer gene mutations and how those mutations typically look within families. For instance, it was known that breast cancer runs in our family. However, while my dad was diagnosed with pancreatic cancer and not breast cancer, it was relatively easy to overlook the hereditary relationship of this diagnosis initially. My dad’s local oncologist even overlooked the fact that his pancreatic cancer diagnosis could be connected to all the breast cancer in the family.
How did finally learning about BRCA gene mutations and Andy’s diagnosis make you feel?
Andy: I was stunned and fearful, but my physician knew my family history. My mother and all three of her sisters died from breast cancer before they turned 55. My physician’s wife is a BRCA2 carrier, so he told me he thought I could also be a carrier of a mutation and recommended a genetic test as soon as possible. He informed me of recent developments in targeted BRCA therapies, so I was hopeful.
Savannah: Looking back, I think the biggest emotion at the time was shock and disbelief. I had been out of the country at the time and didn't fully realize the extent of the examinations that were being done until the day after I returned from my trip. That’s when we received the diagnosis. From there, everything moved quickly from suspicion, to scan, to biopsy, to diagnosis and then to treatment. I don't think I fully processed what happened until months later.
Why was it important for you to get tested after your father’s diagnosis and to become educated on BRCA-related hereditary cancer?
Savannah: In the initial shock of everything and given our family health history, I was very hopeful that my dad had a BRCA mutation, as it seemed like the best-case scenario. However, because of that initial shock and focus on him and his health, I did not even think about how this could affect me. It wasn’t until someone I worked with pointed this out and stated, "Wouldn't a BRCA mutation be awful for you?" At that point it finally dawned on me this might be bigger than just my dad even though I was still very focused on my dad and his survival. Being a biology major in college at the time with plans to become some sort of healthcare provider, I knew that the possibility of me being BRCA positive wasn't going to leave my mind until I got tested myself. So, I immediately went for genetic testing after learning that my dad’s testing came back positive for a genetic mutation. A few weeks later my test also came back positive.
I think by this point I had already decided that if the test were positive, I would be having surgery, so my action plan felt very straight forward. I immediately touched base with my doctor to come up with a plan and that was that. Afterwards though, I was able to process a lot more through a lot of genetic counseling and therapy.
This experience definitely helped play a role in why I am a family medicine doctor today. Most people initially assumed I would want to become a Hematology/Oncologist, but it was our family medicine doctor who not only diagnosed my dad with pancreatic cancer, but also found the BRCA mutation. This doctor also helped manage both my dad and my own medical concerns throughout this time, as well as the anxiety that came with this situation for our whole family. I realized that there is a shortage of primary care providers who are willing to go the extra mile and hunt down information needed for patients. I realized I could be that person and I would be very good at it, which is what led me to this career. In fact, I was not pre-med prior to my dad's diagnosis even though it had crossed my mind. I try to remember this every time I see a patient.
Let’s talk cancer prevention research. What are you most interested in learning about in prevention and screening-related research?
Savannah: I am most interested in the future of risk stratification - whether with testing that helps stratify risk further through genetics or blood testing that looks at multiple cancer types. I am also interested in how we screen but manage anxiety at the same time, because it can be hard to balance these two. Lastly, I am very interested in risk modification, as many diseases that lead to inflammation can lead to a higher risk of cancer even in people without genetic mutations. I am interested in learning how doctors work to control certain variables to give all patients, especially those with hereditary genetic risk factors, a better chance of avoiding cancer or better treatment of it if diagnosed.
Do you have any advice for others on how to help cope with living with a BRCA mutation in your everyday life?
Savannah: Counseling! I think everyone should see a counselor in general, but especially during situations like this. I believe having supportive friends is very helpful, especially some outside of the BRCA community, who can help distract you so that it doesn't become your whole world. That being said, it is also important to have a BRCA support system. For me, that was getting involved with FORCE and eventually the Basser Center’s Young Leadership Council. With these organizations I could be as involved as I wanted and needed at various points in my journey. Lastly, it is vital to have a great relationship with your primary care provider, as they can be the first line medical provider you go to for various questions or concerns and can help you manage the anxiety by making you a partner in your healthcare.
Tell us why you decided to enroll in the Basser pancreatic cancer clinical trial and what it means to you to be a participant.
Andy: During my 12th round of chemotherapy, I started to have a vascular reaction. While my body was responding very well to the chemotherapy, the vascular reaction progressively became worse with subsequent treatment and that was extremely hard to overcome. Not to mention, this was mentally draining as well. I felt frustrated and was looking for alternative options for myself so that I could potentially stop feeling the harsh effects of chemotherapy to my body.
So, after round 15 I finally decided to quit. My general practitioner physician told me he had heard about certain cancer centers promoting fasting before treatment to limit side effects of the chemotherapy. I wasn’t completely ready to throw in the towel just yet, so with his guidance, I did a 10-day water only fast. My numbers returned to the normal range and once I regained my strength from the fast, I decided to give chemotherapy one more try. The treatments and following my physician’s advice had produced excellent results in shrinking the tumors; however, I could no longer physically nor mentally continue with chemotherapy. Unfortunately, my reaction to the 16th round of chemotherapy was difficult and I decided that 16 rounds of chemotherapy was enough.
That’s when my daughter Savannah learned of pancreatic cancer clinical trials at the Basser Center through her own BRCA1 journey. She told me there were a couple of trials underway and rather than giving up, I should pursue getting accepted into one of the Basser clinical trials.
I was eventually accepted into a Basser Center pancreatic cancer clinical trial and began taking the next steps. Participating in this trial has helped to preserve my life. I recently passed the 5-year mark since diagnosis and my scans show no visible signs of disease!
I am honored to be an example to others that they should not give up after receiving a life-changing diagnosis. There is progress in understanding the disease, any new therapies and therapy combinations. There is HOPE!
What does your father participating in a pancreatic cancer clinical trial at the Basser Center mean for you and your family?
Savannah: In one word, hope. This trial has given us our life back. My dad works, isn't on chemotherapy anymore, and is minimally disrupted by his "terminal cancer." It means that there are more options available to me and my siblings.
How does your family stay informed and take action together to be as proactive as possible?
Savannah: I stay up to date on most things for work, such as guideline and screening recommendation changes. I also am involved with FORCE and the Basser Young Leadership Council, so I see new clinical trial updates coming through these organizations as well. I do a lot of reading about cancer in general to better understand this disease, which is so ubiquitous in my life and career. I am always looking for next steps or alternative plans. My dad also does a lot of reading and research, and we share what we have found with each other.
Do you have any advice for others who are going through a similar experience?
Andy: Do not give up when you get a diagnosis. Even though you are in shock, take a deep breath and pursue a patient, well-planned approach to executing against your treatment options. Get tested. Work with a physician. Choosing the right physician for you can make a huge difference to ensure you have the most appropriate treatment plan for you personally. If you are already into this journey, do everything you have to do to give your body the best chance to win. During chemotherapy and immunotherapy, I did weekly guided imagery, acupuncture, reiki, meditation, medications for energy and more. Do everything you can to strengthen your mind, body and spirit because there is a better understanding and comprehension of cancer prevention, treatment and clinical trials. There has never been a more hopeful time for pancreatic cancer patients!
Savannah: Be prepared that things will feel like a whirlwind/overwhelming, but NEVER give up hope. You have options. It is always okay to ask questions to your health care providers if you do not understand something. If something doesn't feel right with the plan or with your body, say something! Your healthcare team is relying on you to speak up and partner in your decision making. Lastly, mental health is one of the most important aspects in these experiences. It is a mind game, and you have to be prepared to battle, but also enjoy the little moments that matter. I have become so much better through this journey of being present through horrible days and great days and being okay with that in between space.
Think you or someone you love might carry a BRCA mutation?
Genetic counseling and testing is recommended for individuals whose family and personal health histories point to an increased chance of a cancer gene mutation. To learn if you may be a candidate for genetic testing, take the BRCA risk factor quiz.
How can I get involved in the Basser Young Leadership Council?
Learn more about the Young Leadership Council of the Basser Center for BRCA on our website. To learn about how to become involved with the YLC, please contact Carolyn Brown or call 215.573.0550.