What To Ask Your Doctor After a Diagnosis
- “Top Chef” alum Shirley Chung, 47, has revealed she refused to undergo surgery to remove all of her tongue in her fight against stage four tongue cancer and is instead undergoing chemotherapy and radiation.
- Tongue cancer can be caused by a sexually-transmitted virus called HPV, and top experts suggest getting young adults vaccinated.
- “If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told SurvivorNet in an earlier interview, “because finding a doctor who is up to the latest of information is important.”
- It is important to prepare for your cancer journey, regardless of the type of disease your battling. Ask your doctor the right questions for each step. Ask about your diagnosis, it may help you feel more in control. Ask your healthcare team for more information about your specific type of tongue cancer.
- You should also ask about your treatment options. Knowing what to expect during treatment will help you plan ahead for any additional care or support you may need during this time.
- Remember, medical decisions are incredible tough to make, but it’s best to know all the options when entering a cancer journey and be open with your feelings when speaking with your doctors.
Chung chose to go public with her cancer diagnosis this week, revealing her decision to take a treatment path that is not often taken by patients—and we admire her for speaking out about her concerns and being honest with her doctor. Medical decisions are incredible tough to make, but it’s best to know all the options when entering a cancer journey.
Read MoreChung, who owns a Chinese restaurant called Ms. Chi Cafe with her husband Jimmy Lee, shared the following news on Instagram this week, revealing photos of her newly shaved head.View this post on Instagram
She captioned the post, “I have some personal news to share with you. Since last year December, I had a series of dental issues, I bit my tongue severely; I fractured my tooth and had to extract it and get an implant… we thought it was because I am a heavy teeth grinder.
“And I was too busy to see a EMT specialist. The end of May, ulcers erupted in my mouth and my oral surgeon discovered a hidden tumor under my tongue. A few days later, I was diagnosed, stage 4 tongue cancer, as cancer cells also spread into my lymph nodes.”
She continued, “I was extremely focused on getting all the tests and scans as fast as possible, so I can start on the treatment plans. Sunday June 2nd, Dr. Ho, my lead oncologist at Cedar Sinai called to discuss treatment plans.
“I broke down, crying, trying to put thoughts together and ask questions but physically couldn’t, all I heard was ‘option 1, surgery, 100% removal of your tongue’ … Jimmy was holding it together for both of us, asking if we have any option that I can keep my tongue and the survival rates.”
Thankfully, Chung and her husband’s curiosity and persistence in having another treatment option led her doctor to tell them about a special case that took place at the University of Chicago.
They were informed about how another person battling tongue cancer was cured through chemotherapy and radiation in Chicago, something she described as a “unicorn case.”
“Higher survival rate, or keep my tongue? I chose to keep my tongue, I am a fighter, I am a chef, I can be that unicorn too,” she added.
According to Memorial Sloan Kettering Cancer Center, there are two types of tongue cancer surgeries, a glossectomy [full removal of the tongue] and a partial glossectomy [partial removal of the tongue].
In Chung’s case, her doctor wanted to remove a substantial portion of her tongue, but she chose not to, as doing so would result in her needing further surgeries like reconstruction to rebuild her tongue and rehabilitation to gain as much function in her tongue as she had prior.
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As per Memorial Sloan Kettering, they explain, “MSK’s plastic surgeons preserve and reconstruct the remaining portion of the tongue using innovative techniques to achieve the best function possible. For example, they frequently perform a procedure called a radical forearm flap, taking skin from the forearm and the soft tissues underneath to rebuild the tongue.
“Using microsurgical techniques, they connect the tiny blood vessels and nerves from the forearm tissue to those in the neck. In addition, our plastic surgeons are able to provide sensation in the tongue and enhance a patient’s ability to speak and swallow by transplanting a sensory nerve from the forearm to the tongue.”
Although Chung and her husband were told her only option was surgery, she ultimately chose another route—through radiation and chemotherapy.
Memorial Sloan Kettering explains, “Radiation therapy for cancer of the tongue involves aiming high-energy beams of particles at the tumor. When the particles reach the tumor, they destroy the cancer cells by damaging their DNA.
They said their radiation team works “closely with other members of your care team and will customize a treatment plan so precise that it factors in the size and shape of your tumor to the millimeter,” adding, “Their goal is not only to eliminate tumor cells but also to prevent the side effects of treatment by keeping the healthy cells in your mouth safe.”
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Leading Experts Urge Us to Be Proactive
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told SurvivorNet in an earlier interview, “because finding a doctor who is up to the latest of information is important.”
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.
Also, in some instances the specific course of treatment is not clear-cut. That’s even more reason why understanding the potential approaches to your disease is crucial.
At the National Cancer Institute, there is a patient referral service that will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.
Cancer Research Legend Urges Patients to Get Multiple Opinions
Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers.
“So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, told SurvivorNet.
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn’t listening to you, or isn’t giving you good advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn’t improving on your current treatment
WATCH: Be Pushy, Be Your Own Advocateâ- Don’t Settle
Just remember, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.
Tongue Cancer: Understanding the Cause of Head & Neck Cancers
According to Cedars-Sinai, several types of cancer develop in the tongue, with the most common being squamous cell carcinoma. The two types of tongue cancer are:
- Cancer of the oral tongue, which consists of the front two-thirds of the tongue that you can stick.
- Cancer of the base of the tongue, the area which is the back one-third of the tongue that extends down the throat.
Although some people may be diagnosed with tongue cancer and have no risk factors, Cedars-Sinai says this type of cancer is most commonly found in adults 40 years old and up. Men are also twice as likely to be diagnosed with tongue cancer.
Expert Resources On Coping With a Diagnosis
- ‘Be Patient With Your Emotions’: A Social Worker’s Insights Into Handling a Cancer Diagnosis
- Fear, Anger, Anxiety: You’re Entitled To Your Emotions
- Responding to Stress: How to Cope With Complex & Changing Emotions
- SN & You Presents Mental Health: Coping With Emotions
- Mental Health: Understanding the Three Wellsprings of Vitality
Other risk factors, as per Cedars-Sinai include:
- Smoking and drinking alcohol [smokers are 5x more likely to develop tongue cancer than nonsmokers]
- Human papillomavirus (HPV)
- African-American men have a greater risk than caucasians
It’s unclear what led to Shirley Chung’s diagnosis, but it’s important to understand that symptoms of tongue cancer can include:
- An unusual lump on the side of the tongue
- An ulcer-like lump, of a grayish-pink to red color
- A lump that bleeds easily when touched
Tongue cancer may be hard to spot in its early stages, however, when the cancer develops, patients may experience trouble with swallowing, voice changes, pain in the ear, pain in the throat, or a feeling of fullness in the throat.
HPV and Cancer Risk: The Basics
As for how throat cancer is diagnosed, it’s usually done through X-rays, CT scans, and PET scans. A diagnosis often requires a biopsy.
For tongue cancer treatment, surgery, chemotherapy and radiation therapy are usually done.
It’s much more common to know someone who has a head or neck cancer, like tongue cancer, now-a-days than it was several decades ago. And that’s because of its strong connection to the human papillomavirus, also known as HPV, which is the most common sexually transmitted infection in the United States.
“From the 1980s to the 2010s, the rate of HPV-related head and neck cancers has gone up by 300 percent,” Dr. Ted Teknos, a head and neck cancer specialist, and president and scientific director of University Hospitals Seidman Cancer Center in Cleveland, Ohio, told SurvivorNet during a previous interview.
The vast majority of humans in the United States both men and women will eventually get infected with HPV, according to Dr. Allen Ho, a head and neck surgeon at Cedars-Sinai.
Expert Resources On Coping With a Diagnosis
- ‘Be Patient With Your Emotions’: A Social Worker’s Insights Into Handling a Cancer Diagnosis
- Fear, Anger, Anxiety: You’re Entitled To Your Emotions
- Responding to Stress: How to Cope With Complex & Changing Emotions
- SN & You Presents Mental Health: Coping With Emotions
- Mental Health: Understanding the Three Wellsprings of Vitality
“The important thing to know about HPV is that there are many different strains, and only a couple of them tend to be more cancer-inducing,” he told SurvivorNet.
“Probably less than 1 percent of the population who get infected happen to have the cancer-causing virus that somehow their immune system fails to clear, and over 15 to 20 years it develops from a viral infection into a tumor, and a cancer.”
It’s unclear whether HPV alone is enough to trigger the changes in your cells that lead to head and neck cancers, or whether this happens in combination with other risk factors like smoking.
Of course, some people who develop head and/or neck cancers have no known risk factors for the condition. Genetics can play a role in this cancer, too.
Why the HPV Vaccine is so Important in Preventing Cancer
Head and neck cancers are unique in that they’re usually preventable with the HPV vaccine. And that’s why those eligible should get vaccinated against HPV, SurvivorNet experts have told us.
The vaccine is typically given to children before they are sexually active, as HPV is transmitted through sexual contact.
And contrary to some detrimental misinformation circulated online, the HPV vaccine is entirely safe.
There are virtually no side effects with this vaccine, Dr. Jonathan Berek, director of the Women’s Cancer Center at Stanford Medical Center, previously told SurvivorNet.
Contributing: SurvivorNet Staff
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