Medical decisions for people with an inherited mutation who have been diagnosed with cancer
Currently there are no cancer treatments approved specifically for people with a mutation, nor guidelines for treating cancer specifically for people with an inherited mutation. However, experts are conducting research studies to learn which treatments may work best for people with a mutation. To learn more about standard of care treatment options for specific types of cancer, visit our section on Cancer Treatment by Cancer Type.
Get Support
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
updated: 08/06/2022
Related Resources
The following resources include information on mutations.
- FORCE video: Cancer Risks, Screening & Prevention for People w/ , , & Other Genes
- The Hamartoma Tumor Syndrome Foundation
updated: 03/17/2022
Paying For Care
Paying for cancer treatment
The majority of public and private health insurance plans are required to cover cancer diagnosis and treatment; copays, coinsurance and deductibles often apply. Patient costs and coverage for specific doctors, facilities or treatments may vary based on your health plan. Visit our section on Insurance and Paying for Care: Treatment for more information, links to sample appeal letters and other resources.
If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.
Some pharmaceutical companies have assistance programs that help cover the cost for their medications:
- Astellas Patient Assistance Program
- AstraZeneca Access 360
- Bayer US Patient Assistance Foundation
- Bristol-Myers Squibb Patient Assistance Foundation
- Eisai Patient Assistance Program
- Genentech Access Solutions
- GSK for You
- Janssen Patient Access Program
- LIlly Cares
- Merck Helps
- Pfizer Oncology Together
- Novartis Patient Assistance
- Sanofi Patient Connection
- Seattle Genetics' SeaGen Secure
- Taiho's Patient Support Program
- Takeda's Help at Hand
- Trodelvy Access Services
Organizations that offer co-pay assistance:
- Cancercare
- Patient Advocate Foundation
- Colorectal Cancer Alliance offers financial support to people in treatment for colorectal cancer.
Other resources:
- The American Cancer Society provides information and resources on covering the cost of cancer care. Public assistance, such as Medicaid may be available if you are ineligible for other programs.
- Needy Meds: Assistance programs to help patients with cost of medications and other healthcare.
- Triage Cancer offers tools and resources to help individuals cope with the financial aspects of a cancer diagnosis.
updated: 02/10/2023
Open Clinical Trials
The following are studies enrolling people with inherited mutations.
- NCT04042831: in Treating Patients With Biliary Tract Cancer With Aberrant Repair Gene Mutations. This study will look at how well the drug works in treating people who have been diagnosed with biliary tract (bile duct) cancer that has spread to other places in the body and who also have an inherited or tumor mutation in certain genes, including .
- NCT04586270: A Study of TAS0612 for Treating People with Advanced or Cancers. The purpose of this study is to see if TAS0612 is safe in participants with advanced or solid tumor cancer.
- NCT04094675: Sirolimus for With Colon Polyposis. This study is looking at the effect of the drug sirolimus on the number of colon in patients with and polyposis over a 1 year period.
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.
updated: 05/30/2023