Written by Paula Długosz, PhD, Caregiver

Words such as DNA, protein, gene sequencing and organoids are often used to explain how researchers are working to find answers. Yes, DNA, that part of our bodies that makes us all unique and is shaped like fusilli pasta.  We sometimes have an idea what these words mean, but when they are all used together, it can be confusing, like mixing fusilli with bowtie pasta!


Research Rookies is an ongoing article series designed to help patients and caregivers understand the research that is being done to find answers to questions about pheo para.  It’s written in easy-to-understand language focused on making us all better patient and caregiver advocates and providing much-needed hope to those affected. We also provide links to resources where you can find more information about these research topics.



Edition 3 – When Your Tumor “Lights Up” on a Ga68-DOTATATE PET/CT and FDG PET/CT Scan

Edition 2 – Outsmarting our pheos and paras!  Molecular Radioactive Trojan Horses are Being Used to Beat Pheochromocytoma and Paraganglioma

Edition 1 – Below

Your tumor can help find answers!

Are you having surgery soon? Do you want to help accelerate pheo para research by donating your tumor sample? Your tumor could help advance clinical cancer research.

For most cancers, scientists do not fully understand the relationships between the genetic makeup of the cancer and factors that determine its growth and inhibition. The creation of a model that describes these relationships will be important in advancing cancer research and treatment. Researchers need donated tumor tissue in order to create these models.

If you decide to donate your tumor, what will happen to your tumor sample?

At first, researchers will try to find the best growth conditions for your tumorous cells so that they can grow continuously in a laboratory dish. By these means, if successful, a cancer cell line will be created. The ability to grow tumor cells will allow researchers to test possible mechanisms of tumor growth, as well as potential new treatments and prevention strategies.

Cancer cells mutate in many different ways to be able to survive. The genetic mutations that are present in a tumor sample will be identified by DNA sequencing. These genetic mutations enable cancer cells to grow uncontrollably, yet they also contribute to the creation of cancer weak points that normal cells lack. Knowledge about these specific weak points or “genetic dependencies”, may facilitate the discovery of promising new drugs or repurposing existing drugs.

Newly generated tumor models will allow testing for factors that may affect tumor growth by exposing them to different conditions.  These variations can be carried out at both genomic (DNA) and protein levels. On the genomic level, CRISPR genome-editing tools, which can switch expression of particular genes on or off, will be used. On the protein level, researchers can modify or inhibit actions of proteins that may be necessary for tumor growth. Thousands of drugs that are already available on the market, as well as potential medicines, will be tested in a robust screen.  This data can be used by a great number of molecular biologists and computational scientists worldwide to develop new cancer therapies or repurpose existing drugs. You, as a patient, can also greatly contribute to the advances in cancer research by donating your tumor sample!

Patients who are having surgery and would like to donate their tissue can learn more about enrolling at Pattern.org.

Find more info here: