ACC Sometimes Misdiagnosed

Patty’s ear problems started at age 16. She wasn’t diagnosed until age 25. She’s now 29.

Not everyone wants their name out on the web, so I’ll call this patient Patty. 

It’s not unusual for ACC to be diagnosed. From the time Patty turned 16 she complained about problems with her ears. Her family lived in the Kansas City area, not Podunk in the boonies. Her parents took her to one specialist after another.

Frequently Patty had irritation, inflammation and other symptoms. The ENTs treated her with ear drops, steroids, and various other miscellaneous medications.

By the time Patty went to college she’d seen three different ENT’s. None of them could figure out the repeated episodes of pain. The 4th ENT decided to perform a minor surgery to remove the scar tissue from her ear and graft skin from her arm onto the surface of the ear canal.

When the doctor sent the scar/inflamed tissue to the pathology lab for a routine biopsy, it came back Adenoid Cystic Carcinoma (ACC). Even that fourth ENT didn’t think the Patty’s ear problems were anything to worry about—not until the biopsy returned.

Remember, doctors are human, God is divine. Second, third and even fourth opinions are sometimes necessary to find the absolute truth. ACC is one of the rare cancers many ENT’s never see in a lifetime.

I will say to the Lord, “He is my refuge and my fortress, my God, in whom I trust. Psalm 91:2

For more information ACCOI

ACC Medical Research

photo by: freestockphoto.biz

Have you prayed for a 

medical research team lately?

Nancy was diagnosed with sublingual salivary (ACC). She had surgery in Dallas, the Neutron and Gamma Knife Radiation in Seattle, WA. She’s doing well, but she struggles with dry mouth and all the side effects.

Nancy is an ACCOI board member and wrote today:

I stay in touch with Oral Cancer Foundation and their news. I was very excited to read their latest news bulletin at http://oralcancernews.org/wp/stem-cell-sparing-radiotherapy-for-head-and-neck-cancer-may-avoid-salivary-gland-damage/

Researchers in Barcelona, Spain believe they may have found a way to avoid damaging salivary glands during radiotherapy treatment for head and neck cancer – a discovery that could improve the quality of life of 500,000 patients a year worldwide with the disease.

If you struggle with any cancer, you understand the importance of research.

Pray for every researcher and especially those who take on a rare cancer like ACC. 

Take Care of Your ACC Mouth

freestockphoto

Adenoid Cystic Carcinoma (ACC) invaded Karen White’s life. Her life as wife, mother and office manager for Brad White Ministries changed. Fortunately, because Karen’s doctor correctly diagnosed her and a man at a concert told Brad about proton radiation treatment at M.D. Anderson, Karen is doing well after her treatment.

Her treatment didn’t happen overnight or as easily as the sentence above makes it sound. Karen and her family still need our prayers.

In my research I’ve found many who have radiation of the mouth; head and neck area suffer from sores in the mouth and dry mouth conditions. With all cancers it is important to eat a good balanced diet and keep your weight up. Of course, the sores in the mouth make it difficult to eat.

Here is great advice from ACC Survivors

What does Adenoid Cystic Carcinoma Look Like

Jesus at the Door of Your Heart
Photo by Kat 2007

Leave your comments on Karen White ACC Facebook page Encourage Karen and Brad with your prayer support. Leave a note on Brad White Ministries 

For several weeks I’ve been reading posts about Adenoid Cystic Carcinoma (ACC), cancer that originates in the salivary gland. The more I read, the more I know we need more information easily accessible. Many have been misdiagnosed for years.

In almost every case of misdiagnosis, the patient felt certain there was something more wrong and persistently sought treatment. Why isn’t ACC recognized by every doctor? Because most doctors have never seen it—many have never heard of it.

Karen White was properly diagnosed. She’s had proton radiation at M.D. Anderson. Does that mean Karen will never see another ACC doctor again? No, it means for now Karen is doing great.

No one can predict how a rare cancer like ACC will react down the road. The good news is Karen is living like before, dedicated to the Lord.  

            Thanking the Lord for every good day,

            Enjoying the moments

            Living life to the fullest.

            She knows her life is totally in God’s hands.

The Lord is my light and my salvation—whom shall I fear?

The Lord is the stronghold of my life—of whom shall I be afraid?

Psalm 27:1-2 (niv)

Karen White had a lingering sore in her mouth. When she decided to see a doctor, he didn't seem terribly concerned, but he did a biopsy. Then one morning the doctor called Karen.

“Will you and Brad come in to my office?”

“When the doctor called and asked if Brad could come to the appointment with me, it kind of indicated the biopsy results might be serious,” Karen said.

Brad was on a flight at that moment from Norway. “He told me to take Nikki (16) with me. She was with me when the doctor gave me the news. [Adenoid Cystic Carcinoma]. When we arrived home I told Amber, our then 10 year old daughter. Nikki and I decided not to tell Brad until he got home.” (He flew Bergen, Norway to Amsterdam. Amsterdam to Atlanta and Atlanta to Memphis.)

In the middle of his flight Brad started worrying about the biopsy results.

“Neither of us or the doctor had been worried for a minute, but that day the Lord prepared him for the news,” Karen said. “As soon as he arrived in Atlanta he called me. His first words were, “What about the biopsy?”

That night they called Karen’s and Brad’s parents.

“We knew the biopsy results were serious, but we certainly didn’t understand the full scope of the biopsy results,” Karen said.“In all honesty, I have felt ministering angels from the minute of diagnosis right up until now. ‘Through many dangers, toils and snares, I have ALREADY come,’ so I know, ‘Tis grace that brought me safe thus far…and grace will lead me home.”

Pray for Karen White and Family

When I asked Brad the caregiver if he could recall wisdom someone shared with the family at just the right time? He answered:

On one particularly rough evening with a few weeks left of treatment, we were worried that things were getting pretty rough and wondered how much worse it could get.  Suddenly the phone beeped indicating an email.  It was from a lady in Norway who had been at one of my concerts.  She said that the Lord had put Karen on her heart night and day and wanted us to know that when we were sleeping in the U.S., the people in Norway were awake praying for Karen.  It was just another one of those moments when God said..."fear not, I'm still in control"

We all need to remember the actions of the woman in Norway. Remember the White’s in prayer, whatever the time of day or night.

Still lionhearted, Kat 

The Rarity of ACC cancer

Karen has Adenoid Cystic Carcinoma (ACC), a cancer that originated in a salivary gland. According to Adenoid Cystic Carcinoma (ACC), has no known causes or links to smoking and alcohol consumption. The disease is slightly more prevalent in women than men. Standard treatment for ACC involves surgery followed by radiation. Currently, there are no drug therapies that have been proven to be effective in a large portion of ACC patients.

When we asked Karen if she met other ACC patients while at M.D. Anderson she replied:

We did not. ACC is a very rare cancer. When we researched online we learned that most oncologists will never encounter an ACC patient in their entire careers. Most of the rest will encounter it only once and almost never will you find an oncologist who has encountered it twice.