All cancer patients face challenges, but few challenges are as great as being diagnosed with a rare cancer for which there is no known treatment protocols.
Rare cancers may not be diagnosed early, it may be difficult to find a doctor familiar with your specific disease, and there are most likely no FDA-approved drugs to treat your particular cancer.
As a salivary gland cancer patient, I've experienced many of these challenges first-hand. Here are some tips that have helped me before, during and after my rare head and neck cancer diagnosis.
Be aware of unexplained changes in your body
Members of both sides of my family on both sides have suffered from many different cancers. So when I found a lump under my jawbone that did not respond to antibiotics, I immediately consulted an otolaryngologist.
Given my family history of cancer, I insisted that my doctor perform tests until cancer was either diagnosed or ruled out.
A sample from the surgical biopsy revealed my salivary gland cancer diagnosis. My particular cancer -- an adenocarcinoma -- was in the minor salivary glands.
Find a doctor familiar with your specific cancer
Fortunately, my best friend, a scientist, has numerous contacts in the biomedical community. She called an Ear, Nose and Throat cancer specialist, who told her that only a small number of doctors were familiar with my disease and recommended a surgeon.
After surgery, my doctor referred me to another hospital for radiation and follow-up care.
A year later, my new doctor announced he was moving to MD Anderson. But he promised to see me in Houston if I ever needed him.
Get a second opinion-- and be willing to travel for the best care
Eight years later, my cancer emerged again. This time my diagnosis was slightly different: mucoepidermoidal adenocarcinoma, another type of salivary gland cancer.
The first round of chemotherapy brought no improvement, so my doctors recommended getting a second opinion at MD Anderson.
I did not hesitate to go to Houston to learn about further cancer treatment options.
Two years later, I still travel to MD Anderson from Virginia five or six times each year. I get all of my PET scans done at MD Anderson, but receive my treatments (except for experimental drugs) near home. My doctors at home in Virginia regularly consult with my doctors at MD Anderson.
Find a health insurance plan that will cover drugs that are not approved by FDA for your cancer
For me, the biggest problem was my health insurance company's refusal to cover any drug that the FDA had not approved for mucoepidermoidal adenocarcinoma.
This is the catch-22 of having a rare cancer: There are not enough patients with my disease to conduct the required three-stage clinical trials.
Fortunately, an assistant in MD Anderson's pharmacy found me a plan that would cover some cancer drugs without preconditions.
Build a supportive network
When I received my second salivary gland cancer diagnosis, Iwas astounded and heartened by the many people who offered to help, prepare meals, buy groceries, drive me to appointments and walk my dog. Many pray for me. Some visit, call or send cards. A college friend even drove to and from Houston with me for a clinical trial.
I've also made a point of staying connected with other people, many of them strangers. I joined a head and neck cancer support group at a nearby hospital. And, while I was in Houston, I connected with the local parish of my church and my Houston college alumni chapter.
Don't give up
One of the first things my nurse at MD Anderson told me was that Merrill Kies, M.D., would never give up on me. I have participated in one clinical trial and have had four other rounds of varying treatments -- some targeted, some chemotherapy, some mixed.
With such a strong partner, certainly one of the best head and neck cancer specialists, I have maintained hope and a positive attitude and even kept my sense of humor. I am confident that my doctor is able to tap into the latest research findings in the quest for promising treatments.
My circle of angels -- including family, friends, my church community, doctors, nurses and other medical providers -- have provided me with wonderful support that has made it possible to get through this. God bless them all.