MD Anderson Center

If there’s anything that my father’s and sister’s cancers have taught me, it is that you, or your guardian, must be your own best and loudest advocate for your health. While it’s easy to assume that the staff at MD Anderson or any «Cancer Center» for that matter, should know everything there is to know about cancer and genetic screening, doing your own research, speaking up, and reaching out would behoove you and your family greatly. Don’t just go along for the ride.
I recently learned that the cancer that killed my younger sister in 2013 and the multiple bouts of cancer my dad has had from 1994-​present, were genetic, despite some testing my father had done in 2002 to ensure it was not genetic, at MD Anderson, in fact.
Although Li-​Fraumeni Syndrome (LFS) was identified in 1969 and being studied at MDA since the 1970s, even as late as 2013, none of the associated oncologists had made the connection between the clinical and the research. Perhaps because he got the tests through the Sarcoma Department who did not consult with the Department of Genetics. But, as I said before, we should have been doing our own research, advocating for full genetic screenings as soon as the technology became available, and fighting for annual screenings to screen for potential issues because once a tumor is big enough to see and feel, it may be too late. It’s reasonable to assume that even a brilliant oncologist might only see the current cancer and not the vast genetic connections and implications.
So that is why, the day I found out that I may also have this disorder, I stayed up until 4am learning about LFS and tracking down various studies around America and globally. Some were begun the year my sister died, some had been extant since the 1970s. I wrote to at least half a dozen studies that night. The coordinator in the MDA Genetics Dept. was the first to get back to me and given our family’s prior relationship with the Cancer Center and their proximity to all our home bases, this seemed like the best fit. Additionally, Dr. Strong has been in LFS research for 30 years and their study has one of the longest and most extensive databases on the disorder.
We set an appointment visit Dr. Strong and her coordinator, Jasmina Bojadzieva, M.S. Naturally, we could have gone through private insurance but aiding in cancer research is about the most worthwhile thing I can think of. Plus I’m going to have cell lines living long after I’m gone. It’s progeny but without the work ;-)
The Genetics team has already had some fascinating successes: after showing exposure to radiation in LFS patients as children lead to increase in cancers in later years, they helped make rapid full body MRI vs traditional X-​ray or CT scans, the standard of care for these cases. In fact, this team has developed an entire protocol for cancer screening and monitoring for LFS patients.
I enrolled in the study and pending my results, I will enroll in the clinical screening protocol. Patients have to pay for the clinical screening with their insurance, but insurance should cover the increased and specialized screenings because these are considered the standard of care.
At this visit, I even learned that LFS can be tested prenatally which, though delving deep into the sci-​fi /​ethical implications of this subject, there’s a certain appeal to the idea that this disorder could be greatly reduced in one generation (only ~15% of these cases are considered «new mutations», while the rest are hereditary). At the very least, it is fascinating to learn about the advances this team and their study participants have contributed to.
After spending about an hour and a half with these brilliant women, and signing all kinds of documents, Phyllis came over to take our samples. While, I’m sure few people enjoy having their blood taken, especially four vials when already hangry and otherwise agitated and anxious, Phyllis made the whole process totally painless. We all hugged goodbye and promised to keep in touch and rode off into the mid-​afternoon sun in our rented Impala.
I don’t know what the future will bring, but we have a plan, and the best people in the world on the case, we are empowered to be our own advocates, and we can only hope our contribution will help propel cancer research further and further. In the 20 years that my family has been plagued with cancer, the Department of Genetics at MD Anderson has finally given me a sense of hope, peace, and empowerment, for which I am very thankful.