As with most health issues many people do not get necessary routine exams and particularly avoid dental care until there is a crisis. This is so with those with means and insurance more so with lower income and indigent people.

In speaking to various people I have found that although this is a large metropolitan area with many dentists, doctors and clinics most see only a few patients with our cancer in a year or even over their career. I would assume that this is also true in smaller areas as well as in larger metropolitan areas where care is scattered among many health care facilities. My dentist who has been in practice for many decades has only encountered a few patient with oral cancer.

Many of the issues we face are the same as with other cancers. If there is no specific oral/head and neck cancer support group in your area I would recommend going to a general cancer support group until one is started. A general support group is also a good supplement to a specific one. Many hospials have support groups for cancer patient and for caregivers. Sometimes there are specific programs sponsored by medical facilities, insurance companies, public health organizations, etc. These are generally advertised in the news paper. You could also check the web sites of hospitals in your area. You do not have to be a patient at a facility to attend these events.

There are several ways to start a support group. The local representative of the American Cancer Society may be able to help. Other people to approach are your own doctors, Cancer Centers, public health units, patient representatives and patient navigators at hospitals and cancer centers.

PLUG: With OCF state chapters forming support groups should become an easier task. There are only a few state chapter volunteers so far. Anyone can participate in the state chapters and other OCF activities by contacting:
Susan Luria susan.ocf.nj@gmail.com
Brittany mcginley@oralcancerfoundation.org.

Malka