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Salivary gland cancer patient on having a rare cancer

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By Caroline Meirs

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, I was 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.  

6 Comments

I also had adenocarcinoma but was misdiagnosed. I went through chemo and radiation and when that failed I was told essentially to go home and die. I went to M.D.Anderson where my tongue was removed. That was almost nine years ago. The cancer metesticized to my lungs and I had surgery to remove the tumor. My last checkup showed no cancer but I had to have my mandible replaced because of the prior radiation. I urge everyone who has cancer to get a second opinion and to go to a teaching hospital like M.D.Anderson. They have been wonderful.
Not only the expert care but the loving care and respect they give all their patients!

I truly appreciate your story, your incredible strength, and the great care you have received from your health care team at M.D. Anderson. Individuals like you and Dr Kies continue to push health care research to provide care for previously incurable conditions.

How does one find the right type of specialist? I have recently been diagnosed with adenocarcinoma via the surgical removal of aa nasal polyp. Reading your story makes me a little concerned as If it is so rare then I find it hard to believe my relatively young ENT (maybe 40 yr old) says that he has treated 3 other patients with adenocarcinoma. Though I live in a major city as far as Australia goes, it still only has a population of 300,000 & outlying areas might add another 200,000 at the most! At this stage I have had the polyp removed and now am about to commence radiation therapy with no mention of an chemotherapy. How does one find the right type of specialist?

We're so sorry to hear you're going through this, Michelle. Please contact our International Center. They will be able to answer your questions: http://bit.ly/1hJbyjc.

Congratulations on being a survivor! I was told, and discovered through experience, that with support of family and friends, a skilled surgeon, and a positive attitude, you can enhance your chances. I chronicled my fun-filled encounter with and recovery from severe mucoepidermoid carcinoma in “Eight Billion Steps: My Impossible Quest For Cancer Comedy.” http://tinyurl.com/kqovm23

I am glad I found your website. I have a lump under my jaw line by my ear. It has been there for years. Very first time I went to a dr I was told if it doesn't hurt why bother it. Well as yrs have gone by this lump has gotten bigger so I went to another dr. This did an ultrasound and claimed it was a lympnode and was going to pro form surgery. Before my surgery I fell and broke my ankle and did not have surgery. I tend to ignore the lump cause my ankle put me in a financial bind. Then I got a case of vertigo and the dr question me about this lump. I said oh it's been there for yrs. the dr was very concerned and said I needed to get this looked at ASAP. I go to another Dr and this time I am told I have a mess in my salva gland from a ct scan and i need to go to an ear nose and throat dr. So I go back to the very beginning to the dr who wanted to operate from ultrasound results but now he says its okay and its just a salva gland stone. No need for surgury "same dr who was going to operate and remove it in beginning" Come back in 3 months was what I was told. Thank you for your story cause I was gonna stop bothering about my lump. I am starting to believe it might be salva gland cancer and they are not trained in this area so they keep bouncing me around. So my next appointment I am putting my foot down. Until they can rule it out as cancer or is cancer I am not giving up. Thank you again.

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