Monthly Archives: August 2011

Ear, nose and throat docs weigh in on controversial test

Source: commonhealth.wbur.org
Author: Rachel Zimmerman

Last week, WBUR’s Martha Bebinger wrote a story about doctors at Beth Israel Deaconess Medical Center who, for the first time, got access to a list of prices for common tests and procedures. The piece triggered a minor uprising among some ENT specialists, who offered impassioned comments on the story. Martha explains the controversy:
One primary care doctor, David Ives, the medical director of Affiliated Physicians Group, the largest group of private doctors that admits patients to Beth Israel, reacted to the price of a nasal endoscopy and said he thinks the procedure is used too often when a physical exam would suffice.

This comment angered many Ear, Nose and Throat specialists who say the development and use of this scope is one of the most important diagnostic tools in their field in recent history. Before filing the story, I searched for medical literature comparing either the cost effectiveness or the outcomes of a nasal endoscopy vs. a physical exam. I didn’t find anything. I did not call a representative of the American Academy of Otolaryngology for their views on nasal endoscopy. We offer that now.

Wendy Stern is the chair elect of the Public Relations committee for the American Academy of Otolaryngology/Head and Neck Surgery, a former president of the Massachusetts Society of Otolaryngology. Dr. Stern says nasal endoscopy allows the physician to look for signs of bacterial infection, structural changes, polyps or tumors that would not be visible without this tool.

Not using it, “could be harmful or even deadly in the event a patient had cancer,” says Stern. Using the scope appropriately “often helps reduce the need for antibiotics or other unnecessary medication,” continues Stern and can “reduce overall medical costs and the costs of sick days and time out of work.”

Stern says, as with any test, there are some doctors who perform unnecessary nasal endoscopies. But she says, “we share concerns about cost and do not condone unnecessary spending. That is why our specialty has and continues to produce evidence-based guidelines.” The academy’s guidelines for treating adults with inflamed sinuses, for example, do not recommend a scope unless there are complications that warrant the test. Stern says she scopes less than 10% of her patients.

Overuse of medical tests is a big topic as Massachusetts and other states look for ways to trim health care spending. Stern and other ENTs who commented on the story say nasal endoscopy is cost effective. I can’t add anything to these claims, or to those of primary care doctors who say the cost of the test is out of line with the benefits because no one makes the cost of the test public. I did, as I said, look for studies that show how many nasal endoscopies result in a finding that made their use worthwhile but I couldn’t fine any.

So I got in touch with Steven Pearson, President of the Institute for Clinical and Economic Review, which is part of the Institute for Technology Assessment at Massachusetts General Hospital. Here are Pearson’s thoughts on this story and controversy:

“PCPs have long known that some specialists like to do lots of tests and treatments, and others are more conservative. When there isn’t great evidence to guide practice, we will always see variation in the use of procedures based on the varying skills, experiences, reimbursement status, and mindsets of different specialists. A good PCP knows his or her specialists well, and should take into consideration whether the specialist is a good diagnostician and does not indiscriminately use invasive and expensive technologies.”

In talking to Drs. Stern, Pearson (as well as a dozen ENTs and primary care doctors about this story), there may be common ground and it may sound something like this:

Nasal endoscopy is an important test that is cost effective when used appropriately. But as long as doctors are worried about lawsuits and are paid based on how often they do a test, there will be some inappropriate use.

Sound right?

August, 2011|Oral Cancer News|

Blood filter to be tested on cancer patients

Source: www.signonsandiego.com
Author: Keith Darcé

A Santa Monica research center will test an experimental therapeutic filtering device being developed by Aethlon Medical on blood taken from cancer patients, the San Diego company said Wednesday.

The study will target exosomes, bubbles of protein and RNA molecules excreted by cancerous cells that can block immune system cells from fighting the illness. By removing exosomes from circulating blood, Aethlon officials hope their device will improve the body’s ability to fight cancer and the effectiveness of treatments such as chemotherapy. Blood taken from 25 patients with non-small cell lung cancer, prostate cancer, melanoma, sarcoma, and head and neck cancer will be circulated through the Hemopurifier device.

In clinical use, blood would be filltered directly from the patient and returned to the body in a similar way to kidney dialysis. However, in the newly announced pre-clinical trial blood will not be returned to patients, Aethlon Chairman and Chief Executive Officer James Joyce said.

“if we validate that our Hemopurifier is efficient in capturing exosomes, its possible that we could transition towards a human treatment study to evaluate exosome clearance from the entire circulatory system,” he said.

The test will be conducted by the Sarcoma Oncology Center, a nonprofit independent research institute focused on cancer therapy development.

“This clinical histological study is a critical validation step in Aethlon’s Hemopurifier strategy for cancer,” said Dr. Sant Chawla, the trial’s chief investigator. “The concept of ‘subtractive therapy’, eliminating a major mechanism of tumor progression and resistance to drugs, represents a potential breakout solution that needs to be tested in the clinic.”

The trial will involve 25 patients and will cost just under $75,000, Aethlon officials said.

The filtering system works by pumping blood through a cartridge containing 2,800 hollow fibers that are perforated by tiny holes measuring about 250 nanometers. Plasma and red and white blood cells pass through the holes and return to the circulatory system while exosomes and other larger particles, such as viruses, are trapped.

The Hemopurifier was cleared by U.S. regulators in 2007 for safety testing to counteract bioterrorism agents. Last year, the company launched a study of the system on hepatitis C patients in India with the Medanta Medicity Institute near New Delhi. In May, Aethlon asked the Food and Drug Administration to approve a Phase 1 clinical trial of the device on hepatitis C patients in the United States.

August, 2011|Oral Cancer News|

Students can’t commit to quitting

Source: www.gcsunade.com
Author: Lindsay Peterson

A Georgia College student steps outside, pauses and inhales, filling his lungs with acetone, ammonia, arsenic, benzene, butane, formaldehyde, lead and turpentine – just 8 of the more than 50 carcinogens found in the average cigarette.

According to the Centers for Disease Control and Prevention, of the 46 million smokers in the U.S., college students are among the highest percentage of smokers. Almost 22 percent of adults ages 18-24 smoke, according to 2009 CDC data.

Their professors are not far behind them in their smoking addiction. According to the CDC data, almost 22 percent of people ages 45-64 are smokers. In 2009, the CDC found that adults in the Southeast were among the most prevalent smokers in the United States.

While there are no hard statistics for the percentage of students and staff that smoke at GC, it is not uncommon to see a familiar gathering of smokers sitting outside any of the dorms.

Lauren Luker, junior mass communication major, started smoking in order to get a break at her job as a server.

“You couldn’t have a break unless it was a smoke break,” Luker said.

Now, eight years later, Luker is worried about the health of her lungs and is planning on quitting after several previous failed attempts.

However, quitting such an addictive habit is not always easy, as Luker knows.

According to the National Institute on Drug Abuse, nicotine is as addictive as heroin and cocaine. Fortunately for GC students and staff who are interested in kicking their habit, there is a smoking cessation program held by GC three times a year.

Amy Whatley, the assistant director of the Wellness Programs, leads these free smoking cessation classes.

“(The classes) are held once every fall, spring and summer,” Whatley said.

However, this free program is not very popular among students.

“We’ve only had one student complete (the smoking cessation program) in the last three years,” Whatley said.

While the smoking cessation program is not very popular among GC students, the FDA is beginning a new advertising campaign that has been popular in other countries, such as Australia and Canada.

According to the FDA, as of September 2012, all packages of cigarettes must show graphic images of the effects of smoking and bold text warning of the dangers of smoking.

The graphics range from a man smoking through a hole in his throat to a mouth riddled with sores and rotting teeth – the cruel effects of oral cancer.

According to the American Cancer Society, other countries have had a great success rate with this controversial method. A positive correlation has been shown between people becoming more aware of the harmful effects of smoking and choosing to quit.

The hope is that after being confronted with the grim side effects, such as oral cancer or death, smokers will be more motivated to cut down on their smoking habit or quit altogether.

Currently, smoking is responsible for 20 percent of deaths in the U.S., and is the leading cause of preventable death.

But the human body is resilient and begins to heal itself just minutes after the last cigarette is smoked.

According to the American Cancer Society, just 20 minutes after quitting smoking, blood pressure is noticeably reduced.

Twelve hours after a person quits smoking, the carbon monoxide level in their blood drops to normal.

At nine months, the smoker’s fatigue and shortness of breath decreases.

One year after quitting, an ex-smoker’s risk of heart disease is half that of a smoker.

Ten years after quitting, the death rate for lung cancer is approximately half that of a continuing smoker.

Although university denizens find themselves among the most prone demographics of smokers, they can breathe more easily knowing that GC provides help for those who need it.

August, 2011|Oral Cancer News|

George Karl takes cancer message to fundraiser in Spokane

Source: www.nba.com
Author: Aaron J. Lopez, Nuggets.com

Nuggets coach George Karl will be the first person to admit that his fashion sense is more faux pas than je ne sais quoi.

He prefers shorts and golf shirts over dress shoes and designer ties, and he often jokes that his clothing choice for the day is determined by what’s on top of the hamper.

When it comes to assisting in the fight against cancer, Karl will meet even the strictest of dress codes.

Karl, who has survived head and neck cancer and prostate cancer in the past six years, will don a tuxedo this weekend when he serves as the guest speaker at a Coaches vs. Cancer fundraiser in Spokane, Wash. It is the 10th year of the event founded by Gonzaga men’s basketball coach Mark Few and his wife Marcy.

“I enjoy speaking about cancer,” Karl said. “It’s become my hobby/ambassadorship, whatever word you want to use. I play amateur sociologist and try to help people become more aware about what is going on.”

Karl, 60, has become extremely educated about cancer treatments, research and funding options since recovering from his latest battle over the past 20 months. He is a spokesman for the Cancer Care Initiative at Swedish Medical Center in Englewood and St. Jude Research Hospital in Memphis, Tenn. He also is active with the Cancer League of Colorado and the American Cancer Society.

“With all the information and knowledge we have our hands on now, it seems like we spend it in frivolous areas more than real areas,” Karl said. “I’m sure people find good information but sometimes we need a navigator for our information.”

Since its inception in 2002, the Fews have helped raise more than $4.7 million for the American Cancer Society and Washington-area cancer organizations. Their event is the largest Coaches vs. Cancer fundraiser in the country. More than $675,000 has been donated to Camp Goodtimes, a camp held annually for children with cancer.

“It is a huge honor to have coach Karl attend and speak at our event in Spokane,” Mark Few said. “I have always admired him as a coach. He is tenacious, passionate and obviously a tremendous teacher of the game.

“When he spoke out about his fight against cancer, I admired him that much more. What a great example to my wife and I to continue what we are doing and be a voice for those who need our help to raise money to defeat this disease. For coach Karl to take time out of his busy schedule to help us out is huge. It makes our 10th annual event that much more special.”

Karl will participate in a charity golf tournament Saturday and then deliver the keynote speech at a gala later that night. University of Colorado men’s basketball coach Tad Boyle is one of several college coaches scheduled to attend.

“I always enjoy the adventure of being with a lot of college coaches,” Karl said. “It will be an arena of basketball, but it won’t be my arena. We get into heated discussions on the game. I believe we coach different games.”

Karl and Boyle talked hoops recently during a round of golf at Boulder Country Club. Karl and his coaching staff are planning a clinic with Colorado and Wyoming college coaches sometime next month.

August, 2011|Oral Cancer News|

Rate of HPV Vaccination in Teens Lagging

Source: The Associated Press
Author: Staff

 

Only about half of the teenage girls in the U.S. have rolled up their sleeves for a controversial vaccine against cervical cancer — a rate well below those for two other vaccinations aimed at adolescents.

The vaccine hit the market in 2006. By last year, just 49 percent of girls had gotten at least the first of the recommended three shots for human papilloma virus, or HPV, a sexually-transmitted bug that can cause cervical cancer and genital warts. Only a third had gotten all three doses, the Centers for Disease Control and Prevention said Thursday.

In contrast, the CDC said about two-thirds of teens had gotten the recommended shot for one type of bacterial meningitis and a shot for meningitis and tetanus, diphtheria and whooping cough.

Granted, it can take many years for a new vaccine to catch on and reach the 90 percent and above range for many longstanding childhood vaccines. But use of HPV vaccine has been “very disappointing” compared to other newer vaccines, said the CDC’s Dr. Melinda Wharton.

“If we don’t do a much better job, we’re leaving another generation vulnerable to cervical cancer later in life,” said Wharton.

Why aren’t more girls getting HPV shots? The vaccine can be very expensive, and it can be a bit of a hassle. It takes three visits to the doctor over six months.

But sex no doubt has something to do with it, experts said.

Girls are supposed to start the series when they are 11 or 12 before most girls become sexually active. The vaccine only works if a girl is vaccinated before she’s first exposed to the virus.

But some parents may misunderstand, thinking their daughters don’t need it at such a young age because they aren’t sexually active. Others may believe that it would require a discussion about sex and sexuality a talk they may not feel ready to have, some experts said.

The government needs to be more aggressive about changing those perceptions with a major education campaign, Jeff Levi, executive director of the Trust for America’s Health, a Washington, D.C.-based research group, said in a statement.

Millions of Americans women and men become infected with HPV each year, though most show no symptoms and clear the virus on their own. But some strains persist and can cause genital warts and cancer. About 12,000 women are diagnosed with cervical cancer each year, and about 4,000 die from it, according to CDC statistics.

The new study was based on a 2010 telephone survey of the parents of more than 19,000 adolescents ages 13 to 17, who allowed researchers to check their kids’ vaccination records.

Rhode Island and Washington had the highest HPV vaccination rates, both around 70 percent for at least one shot. Idaho had the lowest rates, at about 29 percent.

The study was published online in a CDC publication, Morbidity and Mortality Weekly Report.

August, 2011|Oral Cancer News|

New Study for Cancer Patients to Help Improve the Body’s Ability to Fight Illness

Source: Sign On San Diego

A Santa Monica research center will test an experimental therapeutic filtering device being developed by Aethlon Medical on blood taken from cancer patients, the San Diego company said Wednesday.

The study will target exosomes, bubbles of protein and RNA molecules excreted by cancerous cells that can block immune system cells from fighting the illness.

By removing exosomes from circulating blood, Aethlon officials hope their device will improve the body’s ability to fight cancer and the effectiveness of treatments such as chemotherapy.

Blood taken from 25 patients with non-small cell lung cancer, prostate cancer, melanoma, sarcoma, and head and neck cancer will be circulated through the Hemopurifier device.

In clinical use, blood would be filltered directly from the patient and returned to the body in a similar way to kidney dialysis.

However, in the newly announced pre-clinical trial blood will not be returned to patients, Aethlon Chairman and Chief Executive Officer James Joyce said.

“If we validate that our Hemopurifier is efficient in capturing exosomes, its possible that we could transition towards a human treatment study to evaluate exosome clearance from the entire circulatory system,” he said.

The test will be conducted by the Sarcoma Oncology Center, a nonprofit independent research institute focused on cancer therapy development.

“This clinical histological study is a critical validation step in Aethlon’s Hemopurifier strategy for cancer,” said Dr. Sant Chawla, the trial’s chief investigator. “The concept of ‘subtractive therapy’, eliminating a major mechanism of tumor progression and resistance to drugs, represents a potential breakout solution that needs to be tested in the clinic.”

The trial will involve 25 patients and will cost just under $75,000, Aethlon officials said.

The filtering system works by pumping blood through a cartridge containing 2,800 hollow fibers that are perforated by tiny holes measuring about 250 nanometers.

Plasma and red and white blood cells pass through the holes and return to the circulatory system while exosomes and other larger particles, such as viruses, are trapped.

The Hemopurifier was cleared by U.S. regulators in 2007 for safety testing to counteract bioterrorism agents.

Last year, the company launched a study of the system on hepatitis C patients in India with the Medanta Medicity Institute near New Delhi.

In May, Aethlon asked the Food and Drug Administration to approve a Phase 1 clinical trial of the device on hepatitis C patients in the United States.

This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

August, 2011|Oral Cancer News|

Songwriter Nick Ashford Dies; Had Throat Cancer

Source: The New York Times

Nick Ashford, who with Valerie Simpson, his songwriting partner and later wife, wrote some of Motown’s biggest hits, like “Ain’t No Mountain High Enough“ and “Ain’t Nothing Like the Real Thing,” and later recorded their own hits and toured as a duo, died Monday at a hospital in New York City. He was 70 and lived in Manhattan.

Mr. Ashford had throat cancer and was undergoing treatment, but the cause of his death was not immediately known. His death was announced by Liz Rosenberg, a friend who is a longtime music publicist.

One of the primary songwriting and producing teams of Motown, Ashford & Simpson specialized in romantic duets of the most dramatic kind, professing the power of true love and the comforts of sweet talk. In “Ain’t No Mountain High Enough,” from 1967, their first of several hits for Marvin Gaye and Tammi Terrell, lovers in close harmony proclaim their determination that “no wind, no rain, no winter’s cold, can stop me, baby,” but also make cuter promises: “If you’re ever in trouble, I’ll be there on the double.”

Gaye and Terrell also sang the duo’s songs “Your Precious Love,” “Ain’t Nothing Like the Real Thing” and “You’re All I Need to Get By.” Diana Ross sang their “Reach Out and Touch Somebody’s Hand,” and when she rerecorded “Ain’t No Mountain High Enough“ in 1970, it became the former Supreme’s first No. 1 hit as a solo artist.

“They had magic, and that’s what creates those wonderful hits, that magic,” Verdine White of Earth, Wind and Fire told The Associated Press after learning of his friend’s death. “Without those songs, those artists wouldn’t have been able to go to the next level.”

Nickolas Ashford was born in Fairfield, S.C., and raised in Willow Run, Mich., where his father, Calvin, was a construction worker. He got his musical start at Willow Run Baptist Church, singing and writing songs for the gospel choir. He briefly attended Eastern Michigan University, in Ypsilanti, before heading to New York, where he tried but failed to find success as a dancer.

In 1964, while homeless, Mr. Ashford went to White Rock Baptist Church in Harlem, where he met Ms. Simpson, a 17-year-old recent high school graduate who was studying music. They began writing songs together, selling the first bunch for $64. In 1966, after Ray Charles sang “Let’s Go Get Stoned,” a song Ashford & Simpson wrote with Joey Armstead, the duo signed on with Motown as staff writers and producers.

They wrote for virtually every major act on the label, including Gladys Knight and the Pips (“Didn’t You Know You’d Have to Cry Sometime”) and Smokey Robinson and the Miracles (“Who’s Gonna Take the Blame”).

While writing for Motown, Ashford & Simpson nursed a desire to perform, which Berry Gordy Jr., the founder and patriarch of the label, discouraged. They left the label in 1973 and married in 1974.

Ashford & Simpson’s initial collaborations sold poorly, but by the late ‘70s, songs like “Don’t Cost You Nothing,” “It Seems to Hang On” and “Found a Cure” became hits on the R&B charts. Their biggest hit as a solo act was “Solid,” which reached No. 12 on the pop chart and No. 1 on the R&B chart in 1984.

They also continued to write hits for other people. “I’m Every Woman“ was a hit for Chaka Khan in 1978, and later for Whitney Houston on the soundtrack to the 1992 film “The Bodyguard.” In 1996, they opened the Sugar Bar on West 72nd Street in Manhattan, where they often presided over open mic nights. Recently, they received a songwriting credit on Amy Winehouse’s song “Tears Dry on Their Own,” which contains a sample from “Ain’t No Mountain High Enough.”

Besides his wife, Mr. Ashford is survived by two daughters, Nicole and Asia; his brothers Paul, Albert and Frank; and his mother, Alice Ashford.

Ashford & Simpson toured throughout their career, their harmony and vocal interplay illustrating the passion of their lyrics and of their life together.

“When Ms. Simpson sits down at the piano and begins to sing in a bright pop-gospel voice, unchanged since the 1970s,” Stephen Holden of The New York Times wrote in a review in 2007, “she awakens the spirit and tosses it to Mr. Ashford, whose quirkier voice, with its airy falsetto, has gained in strength from the old days. Soon they are urging each other on. By the time their romantic relay winds to a close, both are sweating profusely, and the audience is delirious.”

This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

August, 2011|Oral Cancer News|

Using mouthwash can increase cancer risk for smokers

Source: www.independent.ie
Author: Eilish O’Regan, health correspondent

Smokers have been warned to stay away from mouthwash – as it might increase their risk of developing mouth cancer. The combination of smoking and drinking alcohol has been established as increasing the risk of the disease.

Now researchers have warned that may apply even to the alcohol contained in mouthwash. They pointed out that, while the link between the use of mouthwash containing alcohol and the cancer is not firmly established, it is best avoided or limited in use by smokers. The risk was examined by researchers led by dentist Dr John Reidy and colleagues in the Royal College of Surgeons and St James’s Hospital in Dublin.

Around 400 new cases of oral cancer are diagnosed each year in Ireland with two people a week dying from the disease. Symptoms include red and white patches on the lining of the mouth or tongue, a mouth ulcer that does not heal or a swelling that lasts for more than three weeks.

The most effective way of preventing mouth cancer is to quit smoking and limit consumption of alcohol, say experts. The researchers said they were concerned about the effects the alcohol in the mouthwash had and it was therefore “prudent” to restrict its use by smokers who are considered “high-risk” for mouth cancer. Around three-quarters of mouth cancers arise due to a patient both smoking and drinking, according to the study in the Journal of the Irish Dental Association.

August, 2011|Oral Cancer News|

Chicago Blackhawks legend Stan Makita optimistic regardless of having mouth cancer

Source: blogs.bettor.com
Author: staff

Chicago Blackhawks legendary centre player, Stan Mikita, was diagnosed with stage 1 of oral cancer in May of this year, a shocking revelation the former player made through the National Hockey League (NHL) franchise, but luckily, it has termed to be not life-threatening.

Since his diagnosis, Mikita, also a Hall of Famer expressed that recently he is beginning to feel much better about the situation and explains it as something which has not hampered his day-to-day activities. He still does everything in his usual manner, something that is more than he could have asked for at the age of 71.

“I will know in 10 days how my recovery is when I see the doctor”, Mikita said at the Blackhawks Alumni golf outing named for him at Medinah Country Club. “I’m looking for very favorable comments from him. I might need some work done probably, but I hope it’s not forever. It’s been coming along real well”.

Mikita played all 22 seasons of his career in one of the most loyal ways and that was with Chicago Blackhawks. It all began after he was picked up for his performance in the St. Catharines Teepees in the Junior Ontario Hockey Association. He played his first three games during the 1958-1959 season and went on all the way till 1979-1980.

Fans who see him in this condition cannot help but ask about the progression.

“The best part is, (they ask) ‘Are you on skates yet’?” Mikita said, smiling. “I say, ‘No, I don’t think so. I think that age has passed me.’ But it has been great, the response from all the people and I thank them for not bothering us, when they (probably) should have”.

Being an ambassador of Chicago Blackhawks franchise, Stan Mikita truly shows what being a well-rounded hockey player and person off the ice means. Being as good as with fans and in his public dealing like he was on the ice, he shows that fans are the biggest reason he is still fighting well and strong today.

Having caught the cancer on time, a fast and quick recovery is expected.

August, 2011|Oral Cancer News|

Life After Tongue Cancer, & a Total Glossectomy

Source: UCSF Medical Center
Author: Sierra Tzoore

 

Tongue cancer is uncommon, and it’s especially unusual for it to strike a young person who doesn’t smoke or drink heavily. Kate Brown was just 32 years old, recently married and beginning a new job, when she learned that a spot on her tongue was stage III tongue cancer. Brown was referred to UCSF Medical Center, where surgeons recommended a drastic treatment that was her best shot at survival: a total glossectomy, or tongue removal, followed by chemotherapy and radiation.

Four years later, Brown is cancer-free and, unlike many patients who undergo total glossectomy, able to eat and speak understandably. We asked Brown about her treatment and path to recovery.

How did you discover you had tongue cancer?

A small sore appeared on my tongue when I had a sore throat. I took antibiotics for the sore throat, but the spot was still there after the sore throat subsided. I then started to have ear pain and the sore got larger. I was prescribed antibiotics again. When my doctor looked in my ear she didn’t see any swelling, but the earache became unbearably painful. I’d never been in pain like that.

In my heart of hearts, I knew at that point that something was terribly wrong, but I wasn’t sure what it was. I decided to see another doctor, who referred me to an ear, nose and throat specialist, Dr. Ivor Emanuel at California Pacific Medical Center. Dr. Emanuel’s specialty is allergies but I think he knew right away that what he saw might be cancerous, because he insisted upon a biopsy right away.

Dr. Emanuel was extremely professional and kind. When he got the results he called my primary care doctor and asked for a nurse practitioner to speak with me personally so I wasn’t getting the news over the phone. He had already found Dr. Eisele at UCSF and had written a referral.

Can you describe your surgery?

I had three surgeons who worked as a team: Dr. David EiseleDr. Lisa Orloff and Dr. Steven Wang. They removed my whole tongue. Due to the extent of the tumor they couldn’t save any of it, unfortunately. They split open my jaw, through my chin all the way down through the right side of my neck. It was extremely invasive, but they had to make sure the cancer had not spread anywhere else.

They then took tissue from my left wrist and upper arm area and used it to recreate a tongue. It’s more of a passageway than a tongue like I had before, but it has some feeling to it. I can taste fairly well because there are tastebuds all over your mouth, not just on your tongue. A lot of taste is through smell and mine must be excellent, because I still taste and enjoy food.

Surgeons used to do a larger graft that resembles an actual tongue, but now they think that doesn’t help the patient with eating and speaking. The tissue doesn’t have any musculature and can’t move, so it just hinders the process.

I do feel that the surgeons at UCSF saved my life, and that the way they rebuilt me allowed me to recover from such a drastic surgery as best I possibly could.

What was it like to come out of such an invasive surgery?

It was like I lost two days. I have no idea what happened, I was just in a twilight zone.

When I woke up I was on a feeding tube, I had a tracheotomy and couldn’t speak at all. I had drains in my face to reduce swelling, but even with the drains, your face is still swollen out to here. My first impression was, “Oh my God.” You think you’ll be like that forever, but you won’t. If you see me today you can barely tell. I have scars but I am not disfigured at all.

I spent 13 days in the hospital. I actually told them I felt better than I really did, just so I could go home.

About three months after I got out of the hospital, we went on vacation to Mexico. It was so great to get out of my apartment and do something that felt good. I couldn’t get in the water completely, but I would stand in the ocean up to my waist and just be like, “Aaaaaaaah.”

I want to stress that I was very fortunate to have an incredible network of family and friends who supported me. I don’t think I would have done as well without them, especially my husband, Brian. He was so sweet and caring and was there for me in my darkest hour.

Was it hard to decide to go ahead with this treatment?

My doctors felt that my cancer was extremely aggressive and advanced, and that the surgery, followed by radiation and chemotherapy, would give me the best chance of survival and recovery.

Part of the reason I needed surgery was because my cancer was on the anterior [front] tongue. Strangely enough, tumors at the base of the tongue can sometimes respond better to chemo and radiation. It all depends on your pathology and the stage of cancer.

It’s a personal decision but I wanted the best chance of survival possible.

Many people think it’s going to be the end of their lives if they get the surgery and choose to try chemo and radiation first to save their tongues — even though this isn’t recommended and most often doesn’t work. If you wind up needing the surgery anyway, there can be a lot of complications with surgery after radiation — your skin and blood vessels don’t heal as well. Also, the cancer may essentially never leave your body and end up metastasizing.

It’s something I feel strongly about. I’ve befriended patients who passed away because they went down that path.

How did you learn to eat and speak without a tongue?

It was a very slow process. I still feel like I evolve every few months, especially with my speech.

After the surgery, I tried to eat as many different types of foods as possible before I started radiation treatment. The radiation causes quite a bit of discomfort in your throat and it completely kills your appetite. I was glad I developed those muscles prior to radiation, because I really didn’t eat for two or three months. All my nutrition came through a feeding tube.

I worked with speech therapists initially. The first thing they make you do is swallow water because it’s the hardest — it’s the thinnest liquid. Once you can swallow water without aspirating it, then you can move on to soft foods like applesauce and yogurt.

You kind of have to be hungry to want to master eating. I had lost so much weight that I needed the nutrition from the tube, but if I had too much, I didn’t have the appetite to work on solids. It was a tough balance.

Learning how to eat again was the hardest thing I’d ever done. I was literally dripping sweat. It would take me about two hours to eat bites of teaspoon-sized food. It was so frustrating — I was hungry! I lost about 10 or 15 pounds during treatment.

I now eat every type of food, although I need to be careful to take small bites and because of the radiation, I can’t handle spice. Radiation essentially burns the inside of the mouth, and the tissue is still sensitive. I love spicy food, but it burns so bad, it’s not worth it.

How about relearning to speak?

At first, I used a palatal drop prosthesis. It’s something like a removable retainer, and the theory is it helps with the echo in the mouth. Many people find it helpful, but I found it really socially awkward. I couldn’t eat with it in, I couldn’t exercise with it in, and it was messing up my teeth. I was sick of taking it in and out. And I had to adjust to speaking both ways, with and without the prosthetic. Finally my husband said, “Why don’t you just not use it?”

I stopped using it about two years ago. The best speech therapy for me has been getting out and interacting with the world.

And you’re still making progress with your speech?

This year I’m really working on talking on the phone. Anything phone-related, I used to avoid because it was just so painful to go through. But I don’t want to be dependent on other people to do it for me, so I’ve been forcing myself, and making the other person be patient. I feel I’ve made major improvements the last eight months.

I’m looking for a job and have been doing phone interviews. I tell the person that I have a bit of a speech impediment and if they can’t understand, just ask me to repeat, it’s not a big deal. It’s definitely very telling, how people respond. People really reveal themselves when they come across someone with an impediment.

Chemotherapy can harm fertility, but you were able to save your eggs before you started?

I think that was kind of an afterthought for the doctors, because I was much younger than the typical patient. But when they brought it up I said, “Yes, I want to have a family!” Luckily we had the savings to pay for it.

Before my surgery, I went to the UCSF Fertility Preservation Center, and they saw where my cycle was and all that. Between the surgery and starting chemo and radiation, I had my eggs harvested and frozen. I haven’t had a kid yet but I’m planning on it, hopefully next year.

I know two other women who had tongue cancer who now can’t have kids. One didn’t have [fertility preservation before her chemo and radiation], the other knew about it but didn’t have the funds. I wish more people knew about fertility preservation, and that the storage fees are discounted for people who have had cancer.

What’s your prognosis now?

They feel that with the amount of time that’s gone by, the cancer most likely won’t come back. That would be very, very rare for this type of cancer. I stopped having biannual MRIs about a year ago, and now I just have check-ups.

You volunteer with a patient education and advocacy website. What do you do for them?

Oralcancerfoundation.org (OCF) was a lifesaver for me when I was first diagnosed and went through treatment. I was so scared. Any kind of life-threatening illness is of course terrifying, but this specific type of cancer affects so many aspects of everyday life. We all take eating and speaking for granted until they’re compromised.

I am a patient advocate for OCF. I answer questions in the forums, I meet and communicate with other patients who have gone through or are going through the same surgery and treatments I had. It’s been wonderful to give back to an organization that helped me so much. The site is an invaluable resource for research, awareness and support for patients, families and caretakers.

How did OCF help you when you were a patient?

I was a basket case, especially at first. I didn’t know what to expect. The doctors, they tell you on a need-to-know basis, for sure. So when I read through all these patient stories on the site, the gravity of the situation really set in. I thought, “How on Earth am I going to get through this? How am I ever going to endure this? How will my life be afterwards?” It seemed just completely and totally unfathomable to me. I was scared to death literally — I couldn’t sleep because I was so terrified and petrified. But if you read about it enough and hear about it enough, you get desensitized. There are also blogs on the site, and I started one immediately after my diagnosis.

Now when I communicate with people in the same boat, I tell them: “Just so you know, my life now is great. Now, here’s the deal.”

It’s been nice. I’ve helped a lot of people. I made a promise to myself [when I was sick] that if I get through this, I have to give back in some way. I feel this is my contribution.

What advice would you give to someone facing a frightening health issue?

Put one foot in front of the other. Don’t think too much about the end result, just try to deal with how you’re feeling that day, emotionally and physically.

During the process, I thought, “how am I going to do this — how am I going to work, how am I going to eat, how am I going to function in this world?” But I just kept trying. I definitely failed many times and I definitely had my bad days, when people were rude to me or insensitive. But I also had great days. People surprised me with kindness and empathy.

Talking on the phone, or everything I’ve relearned, at first seemed so unattainable. If you told me six months ago that I’d be doing phone interviews, I would have said you’re crazy. Just try, take it slowly, and see how you do.

 

Kate Brown’s Surgeon

Dr. David Eisele, chairman of the Department of Otolaryngology-Head and Neck Surgery and one of Kate Brown’s surgeons, speaks about her treatment.

Tongue Cancer

There are 50,000 to 60,000 new cases of head and neck cancer a year in the U.S., and a fraction of those are oral cancers. I wouldn’t say that Kate’s type of cancer [squamous cell carcinoma of the tongue] is that rare. What’s so unusual is the fact that she’s young and doesn’t have the usual risk factors — in this country, being a smoker and drinker.

Kate’s Case

This was a difficult case emotionally, because here you have this young woman with advanced cancer that necessitates total glossectomy, which is complete removal of the tongue. It’s pretty uncommon for people to have tumors that necessitate that operation. This was a bad, bad cancer.

The Surgery

In addition to her tongue, we removed 50 lymph nodes from the right side of her neck, since we thought she had a metastatic node there. Then Dr. Orloff and Dr. Wang used tissue from her forearm to reline her mouth. This procedure is called a radial forearm free flap, where the tissue is taken from the forearm and brought up with its own blood supply which is hooked up to recipient vessels in the neck.

The repair we used is somewhat unconventional. A lot of surgeons try to recapitulate the tongue with bulky tissue. What they used for Kate was very thin, and I think that has helped her in her recovery. She has a lot of mobility in her structures — she can swallow, she can taste, and she has fairly understandable speech — because she doesn’t have this big piece of tissue in her mouth.

The amazing thing about Kate is that she accepted this major procedure and has adapted and thrived. Every time I see her, I’m thrilled that she’s doing so well.

August 2011

Photos by Tom Seawell.