Medical decisions for people with an inherited PTEN mutation who have been diagnosed with cancer
Currently there are no cancer treatments approved specifically for people with a PTEN mutation, nor guidelines for treating cancer specifically for people with an inherited PTEN mutation. However, experts are conducting research studies to learn which treatments may work best for people with a PTEN mutation. To learn more about standard of care treatment options for specific types of cancer, visit our section on Cancer Treatment by Cancer Type.
If you are a person with an inherited PTEN mutation, you can find peer support through the following resources:
- Register for the FORCE Message Boards to connect with others who share your situation. Once you register, you can post on the Share Your Mutation board to connect with other people who carry a PTEN mutation.
- FORCE's Peer Navigation Program will match you with a volunteer who shares your mutation and situation and provide you with a free resource guide.
- Contact the FORCE impact leaders in your area to link to local support groups and other resources.
- Attend a virtual support meeting in your area.
- Read the stories from members of our community.
Support through other organizations:
- The PTEN Hamartoma Tumor Syndrome Foundation has resources for people affected by an inherited PTEN mutation.
The following cancer treatment studies are open to people with an inherited PTEN mutation.
- NCT04770246: TAS-117 in Patients With Advanced Solid Tumors Harboring Germline PTEN Mutations. The purpose of this study is to evaluate the safety, tolerability, pharmacokinetics, pharmacodynamics, and antitumor activity of the targeted therapy TAS-117 in patients with advanced or metastatic solid tumors (excluding primary brain tumors) harboring germline PTEN inactivating mutations.
- NCT04317105: Testing the Addition of an Anti-cancer Drug, Copanlisib, to the Usual Immunotherapy (Nivolumab With or Without Ipilimumab) in Patients With Advanced Solid Cancers That Have Changes in the Following Genes: PIK3CA and PTEN. Thiz trial studies the side effects and best dose of copanlisib when given together with nivolumab and ipilimumab and to see how well they work in treating patients with solid cancers that have spread to other places in the body (advanced) and have changes in PIK3CA and PTEN genes.
- NCT03803761: A Study of a New Drug Combination, Copanlisib and Fulvestrant, in Advanced Breast Cancer. This phase I/II trial studies the side effects and how well copanlisib works when given together with fulvestrant in treating patients with estrogen receptor positive (ER+) and human epidermal growth factor receptor 2 negative (HER2-) breast cancer that has spread to other places in the body (advanced) and progressing after prior treatment.
- NCT04251533: Study Assessing the Efficacy and Safety of Alpelisib + Nab-paclitaxel in Subjects With Advanced TNBC Who Carry Either a PIK3CA Mutation or Have PTEN Loss (EPIK-B3). The purpose of this study is to determine whether treatment with alpelisib in combination with nab-paclitaxel is safe and effective in subjects with advanced triple negative breast cancer (aTNBC) who carry either a PIK3CA mutation or have PTEN loss.
NCT02401347: Talazoparib Beyond BRCA (TBB) Trial. People with a PTEN mutation who have metastatic triple-negative breast cancer may qualify for this study. Talazoparib (Talzenna) is a type of treatment known as a PARP inhibitor, which is approved for metastatic breast cancer in people with a BRCA mutation. This study is looking at how well talazoparib works in people with a PTEN or other mutation.
Visit our Research Search and Enroll Tool to find additional cancer treatment studies.