So many of the questions we get from thrivers and caregivers involve some aspect of proper treatment guidelines. For medically accurate responses, we typically refer people to the National Comprehensive Cancer Network (NCCN). We thought it might be helpful to explain in one post what NCCN is and why its guidelines are the gold standard.
NCCN is an alliance of top cancer centers that work together to create documents that outline standard treatment protocols, including recurrent and advanced anal cancer.
Their treatment protocol for anal cancer at all stages is extremely comprehensive. Since 2018 it also includes the immunotherapies nivolumab and pembrolizumab as options for patients with metastatic cancer for whom first-line therapy has not been effective.
To access the site, you will have to register but registration is free. The guidelines are naturally very science-heavy but they can be printed out and shared with the thriver's medical team.
We also encourage people to seek care, or at least a second opinion if they are concerned about their treatment plan, at a hospital within the NCCN member network. This is especially true in situations where a thriver's local hospital has not seen many anal cancer cases: at an NCCN-accredited hospital, the chances of finding appropriate resources and expertise for anal cancer are simply higher.
We recognize that travel is not an option for some thrivers, so at the very minimum we want to make sure everyone knows about the protocols that are freely available for everyone.
Please be sure to let us know if you have any questions about this and do not forget that you are your own best advocate! In addition to the guidelines, make sure to review our Questions to Ask Your Doctor and series on Side Effects of Treatment as these materials are great preparatory resources for anal cancer thrivers at all stages of their journeys.