Head and Neck Cancers

This was originally posted by the National Cancer Institute here.


What are cancers of the head and neck?

Cancers that are known collectively as head and neck cancers usually begin in the squamous cells that line the moist, mucosal surfaces inside the head and neck (for example, inside the mouth, the nose, and the throat). These squamous cell cancers are often referred to as squamous cell carcinomas of the head and neck. Head and neck cancers can also begin in the salivary glands, but salivary gland cancers are relatively uncommon. Salivary glands contain many different types of cells that can become cancerous, so there are many different types of salivary gland cancer.

Cancers of the head and neck are further categorized by the area of the head or neck in which they begin. These areas are described below and labeled in the image of head and neck cancer regions.

Oral cavity: Includes the lips, the front two-thirds of the tongue, the gums, the lining inside the cheeks and lips, the floor (bottom) of the mouth under the tongue, the hard palate (bony top of the mouth), and the small area of the gum behind the wisdom teeth.

Pharynx: The pharynx (throat) is a hollow tube about 5 inches long that starts behind the nose and leads to the esophagus. It has three parts: the nasopharynx (the upper part of the pharynx, behind the nose); the oropharynx (the middle part of the pharynx, including the soft palate [the back of the mouth], the base of the tongue, and the tonsils); the hypopharynx (the lower part of the pharynx).

Larynx: The larynx, also called the voicebox, is a short passageway formed by cartilage just below the pharynx in the neck. The larynx contains the vocal cords. It also has a small piece of tissue, called the epiglottis, which moves to cover the larynx to prevent food from entering the air passages.

Paranasal sinuses and nasal cavity: The paranasal sinuses are small hollow spaces in the bones of the head surrounding the nose. The nasal cavity is the hollow space inside the nose.

Salivary glands: The major salivary glands are in the floor of the mouth and near the jawbone. The salivary glands produce saliva.

Head and neck cancer regions. Illustrates location of paranasal sinuses, nasal cavity, oral cavity, tongue, salivary glands, larynx, and pharynx (including the nasopharynx, oropharynx, and hypopharynx).

Credit: Terese Winslow

Cancers of the brain, the eye, the esophagus, and the thyroid gland, as well as those of the scalp, skin, muscles, and bones of the head and neck, are not usually classified as head and neck cancers.

Sometimes, cancerous squamous cells can be found in the lymph nodes of the upper neck when there is no evidence of cancer in other parts of the head and neck (1). When this happens, the cancer is called metastatic squamous neck cancer with unknown (occult) primary. More information about this cancer type can be found in Metastatic Squamous Neck Cancer with Occult Primary (PDQ®).

What causes cancers of the head and neck?

Alcohol and tobacco use (including smokeless tobacco, sometimes called “chewing tobacco” or “snuff”) are the two most important risk factors for head and neck cancers, especially cancers of the oral cavity, oropharynx, hypopharynx, and larynx (25). At least 75% of head and neck cancers are caused by tobacco and alcohol use (6). People who use both tobacco and alcohol are at greater risk of developing these cancers than people who use either tobacco or alcohol alone (68). Tobacco and alcohol use are not risk factors for salivary gland cancers.

Infection with cancer-causing types of human papillomavirus (HPV), especially HPV type 16, is a risk factor for some types of head and neck cancers, particularly oropharyngeal cancers that involve the tonsils or the base of the tongue (911). In the United States, the incidence of oropharyngeal cancers caused by HPV infection is increasing, while the incidence of oropharyngeal cancers related to other causes is falling (9). More information is available at the HPV and Cancer page.

Other risk factors for cancers of the head and neck include the following:

Paan (betel quid). Immigrants from Southeast Asia who use paan (betel quid) in the mouth should be aware that this habit has been strongly associated with an increased risk of oral cancer (1213).

Preserved or salted foods. Consumption of certain preserved or salted foods during childhood is a risk factor for nasopharyngeal cancer (1415).

Oral health. Poor oral hygiene and missing teeth may be weak risk factors for cancers of the oral cavity (1617). Use of mouthwash that has a high alcohol content is a possible, but not proven, risk factor for cancers of the oral cavity (1617).

Occupational exposure. Occupational exposure to wood dust is a risk factor for nasopharyngeal cancer (1415). Certain industrial exposures, including exposures to asbestos and synthetic fibers, have been associated with cancer of the larynx, but the increase in risk remains controversial (18). People working in certain jobs in the construction, metal, textile, ceramic, logging, and food industries may have an increased risk of cancer of the larynx (19). Industrial exposure to wood or nickel dust or formaldehyde is a risk factor for cancers of the paranasal sinuses and nasal cavity (2022).

Radiation exposure. Radiation to the head and neck, for noncancerous conditions or cancer, is a risk factor for cancer of the salivary glands (162324).

Epstein-Barr virus infection. Infection with the Epstein-Barr virus is a risk factor for nasopharyngeal cancer (25) and cancer of the salivary glands (2627).

Ancestry. Asian ancestry, particularly Chinese ancestry, is a risk factor for nasopharyngeal cancer (1415).

What are the symptoms of head and neck cancers?

The symptoms of head and neck cancers may include a lump or a sore that does not heal, a sore throat that does not go away, difficulty in swallowing, and a change or hoarseness in the voice. These symptoms may also be caused by other, less serious conditions. It is important to check with a doctor or dentist about any of these symptoms. Symptoms that may affect specific areas of the head and neck include the following:

Oral cavity. A white or red patch on the gums, the tongue, or the lining of the mouth; a swelling of the jaw that causes dentures to fit poorly or become uncomfortable; and unusual bleeding or pain in the mouth.

Pharynx. Trouble breathing or speaking; pain when swallowing; pain in the neck or the throat that does not go away; frequent headaches, pain, or ringing in the ears; or trouble hearing.

Larynx. Pain when swallowing or ear pain.

Paranasal sinuses and nasal cavity. Sinuses that are blocked and do not clear; chronic sinus infections that do not respond to treatment with antibiotics; bleeding through the nose; frequent headaches, swelling or other trouble with the eyes; pain in the upper teeth; or problems with dentures.

Salivary glands. Swelling under the chin or around the jawbone, numbness or paralysis of the muscles in the face, or pain in the face, the chin, or the neck that does not go away.

How common are head and neck cancers?

Head and neck cancers account for approximately 4% of all cancers in the United States (28). These cancers are more than twice as common among men as they are among women (29). Head and neck cancers are also diagnosed more often among people over age 50 than they are among younger people.

Researchers estimated that more than 65,000 men and women in this country would be diagnosed with head and neck cancers in 2017 (29).

How can I reduce my risk of developing head and neck cancers?

People who are at risk of head and neck cancers―particularly those who use tobacco―should talk with their doctor about ways that they may be able to reduce their risk. They should also discuss with their doctor how often to have checkups. In addition, ongoing clinical trials are testing the effectiveness of various medications in preventing head and neck cancers in people who have a high risk of developing these diseases. Descriptions of these clinical trials can be accessed by searching NCI’s list of cancer clinical trials. NCI’s list of cancer clinical trials includes all NCI-supported clinical trials that are taking place across the United States and Canada, including the NIH Clinical Center in Bethesda, MD.  For information about other ways to search the list, see Help Finding NCI-Supported Clinical Trials.

Information specialists from NCI’s Cancer Information Service (CIS) can also help people find clinical trials for the prevention of head and neck cancers. The CIS can be reached at 1–800–4–CANCER (1–800–422–6237) or by chatting with a cancer information specialist online through LiveHelp.

Avoiding oral HPV infection may reduce the risk of HPV-associated head and neck cancers. However, it is not yet known whether the Food and Drug Administration-approved HPV vaccines Gardasil®, Gardasil 9®, and Cervarix® prevent HPV infection of the oral cavity, and none of these vaccines has yet been approved for the prevention of oropharyngeal cancer. More information about these vaccines is in the NCI fact sheet Human Papillomavirus (HPV) Vaccines.

How are head and neck cancers diagnosed?

To find the cause of the signs or symptoms of a problem in the head and neck area, a doctor evaluates a person’s medical history, performs a physical examination, and orders diagnostic tests. The exams and tests may vary depending on the symptoms. Examination of a sample of tissue under a microscope is always necessary to confirm a diagnosis of cancer.

If the diagnosis is cancer, the doctor will want to learn the stage (or extent) of disease. Staging is a careful attempt to find out whether the cancer has spread and, if so, to which parts of the body. Staging may involve an examination under anesthesia (in an operating room), x-rays and other imaging procedures, and laboratory tests. Knowing the stage of the disease helps the doctor plan treatment.

How are head and neck cancers treated?

The treatment plan for an individual patient depends on a number of factors, including the exact location of the tumor, the stage of the cancer, and the person’s age and general health. Treatment for head and neck cancer can include surgery, radiation therapy, chemotherapy, targeted therapy, or a combination of treatments.

People who are diagnosed with HPV-positive oropharyngeal cancer may be treated differently than people with oropharyngeal cancers that are HPV-negative. Recent research has shown that patients with HPV-positive oropharyngeal tumors have a better prognosis and may do just as well on less intense treatment. An ongoing clinical trial is investigating this question.

More information about treatment for specific types of head and neck cancers is in the following PDQ® cancer treatment summaries, which are available in patient and health professional versions, as well as in Spanish (the links below go to the patient versions in English):

The patient and the doctor should consider treatment options carefully. They should discuss each type of treatment and how it might change the way the patient looks, talks, eats, or breathes.

What are the side effects of treatment?

Surgery for head and neck cancers often changes the patient’s ability to chew, swallow, or talk. The patient may look different after surgery, and the face and neck may be swollen. The swelling usually goes away within a few weeks. However, if lymph nodes are removed, the flow of lymph in the area where they were removed may be slower and lymph could collect in the tissues, causing additional swelling; this swelling may last for a long time.

After a laryngectomy (surgery to remove the larynx) or other surgery in the neck, parts of the neck and throat may feel numb because nerves have been cut. If lymph nodes in the neck were removed, the shoulder and neck may become weak and stiff.

Patients who receive radiation to the head and neck may experience redness, irritation, and sores in the mouth; a dry mouth or thickened saliva; difficulty in swallowing; changes in taste; or nausea. Other problems that may occur during treatment are loss of taste, which may decrease appetite and affect nutrition, and earaches (caused by the hardening of ear wax). Patients may also notice some swelling or drooping of the skin under the chin and changes in the texture of the skin. The jaw may feel stiff, and patients may not be able to open their mouth as wide as before treatment.

Patients should report any side effects to their doctor or nurse, and discuss how to deal with them.

Where can I find more information about clinical trials for patients with head and neck cancers?

Clinical trials are research studies conducted with people who volunteer to take part. Participation in clinical trials is an option for many patients with head and neck cancer. Ongoing clinical trials are testing the effectiveness of treatments for head and neck cancers. Descriptions of these clinical trials can be accessed by searching NCI’s list of cancer clinical trials, which includes all NCI-supported clinical trials that are taking place across the United States and Canada, including the NIH Clinical Center in Bethesda, MD. For information about other ways to search the list, see Help Finding NCI-Supported Clinical Trials.Alternatively, call NCI’s Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) for information about clinical trials for individuals with head and neck cancer, or chat with a cancer information specialist online through LiveHelp.

People interested in taking part in a clinical trial should talk with their doctor. Information about clinical trials is available in the NCI publication Taking Part in Cancer Treatment Research Studies. This resource describes how research studies are carried out and explains their possible benefits and risks.

What rehabilitation or support options are available for patients with head and neck cancers?

The goal of treatment for head and neck cancers is to control the disease, but doctors are also concerned about preserving the function of the affected areas as much as they can and helping the patient return to normal activities as soon as possible after treatment. Rehabilitation is a very important part of this process. The goals of rehabilitation depend on the extent of the disease and the treatment that a patient has received.

Depending on the location of the cancer and the type of treatment, rehabilitation may include physical therapy, dietary counseling, speech therapy, and/or learning how to care for a stoma. A stoma is an opening into the windpipe through which a patient breathes after a laryngectomy, which is surgery to remove the larynx. The National Library of Medicine has more information about laryngectomy in MedlinePlus.

Sometimes, especially with cancer of the oral cavity, a patient may need reconstructive and plastic surgery to rebuild bones or tissues. However, reconstructive surgery may not always be possible because of damage to the remaining tissue from the original surgery or from radiation therapy. If reconstructive surgery is not possible, a prosthodontist may be able to make a prosthesis (an artificial dental and/or facial part) to restore satisfactory swallowing, speech, and appearance. Patients will receive special training on how to use the device.

Patients who have trouble speaking after treatment may need speech therapy. Often, a speech-language pathologist will visit the patient in the hospital to plan therapy and teach speech exercises or alternative methods of speaking. Speech therapy usually continues after the patient returns home.

Eating may be difficult after treatment for head and neck cancer. Some patients receive nutrients directly into a vein after surgery or need a feeding tube until they can eat on their own. A feeding tube is a flexible plastic tube that is passed into the stomach through the nose or an incision in the abdomen. A nurse or speech-language pathologist can help patients learn how to swallow again after surgery. The NCI booklet Eating Hints: Before, During, and After Cancer Treatment contains many useful suggestions and recipes.

Is follow-up care necessary? What does it involve?

Regular follow-up care is very important after treatment for head and neck cancer to make sure that the cancer has not returned, or that a second primary (new) cancer has not developed. Depending on the type of cancer, medical checkups could include exams of the stoma, if one has been created, and of the mouth, neck, and throat. Regular dental exams may also be necessary.

From time to time, the doctor may perform a complete physical exam, blood tests, x-rays, and computed tomography (CT), positron emission tomography (PET), or magnetic resonance imaging (MRI) scans. The doctor may monitor thyroid and pituitary gland function, especially if the head or neck was treated with radiation. Also, the doctor is likely to counsel patients to stop smoking. Research has shown that continued smoking by a patient with head and neck cancer may reduce the effectiveness of treatment and increase the chance of a second primary cancer.

Additional information can be found at NCI’s Follow-Up Medical Care page.

How can people who have had head and neck cancers reduce their risk of developing a second primary (new) cancer?

People who have been treated for head and neck cancers have an increased chance of developing a new cancer, usually in the head, neck, esophagus, or lungs (30–32). The chance of a second primary cancer varies depending on the site of the original cancer, but it is higher for people who use tobacco and drink alcohol (30).

Especially because patients who smoke have a higher risk of a second primary cancer, doctors encourage patients who use tobacco to quit. Information about tobacco cessation is available from NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237) and in the NCI fact sheet Where To Get Help When You Decide To Quit Smoking. The federal government’s main resource to help people quit using tobacco is BeTobaccoFree.gov.The government also sponsors Smokefree Women, a website to help women quit using tobacco, and Smokefree Teen, which is designed to help teens understand the decisions they make and how those decisions fit into their lives. The toll-free number 1–800–QUIT–NOW (1–800–784–8669) also serves as a single point of access to state-based telephone quitlines.


Selected References

  1. Mendenhall WM, Mancuso AA, Amdur RJ, et al. Squamous cell carcinoma metastatic to the neck from an unknown head and neck primary site. American Journal of Otolaryngology 2001; 22(4):281–287.

    [PubMed Abstract]

  2. Gandini S, Botteri E, Iodice S, et al. Tobacco smoking and cancer: a meta-analysis. International Journal of Cancer 2008; 122(1):155–164.

    [PubMed Abstract]

  3. Hashibe M, Boffetta P, Zaridze D, et al. Evidence for an important role of alcohol- and aldehyde-metabolizing genes in cancers of the upper aerodigestive tract. Cancer Epidemiology, Biomarkers and Prevention 2006; 15(4):696–703.

    [PubMed Abstract]

  4. Hashibe M, Brennan P, Benhamou S, et al. Alcohol drinking in never users of tobacco, cigarette smoking in never drinkers, and the risk of head and neck cancer: pooled analysis in the International Head and Neck Cancer Epidemiology Consortium. Journal of the National Cancer Institute 2007; 99(10):777–789.

    [PubMed Abstract]

  5. Boffetta P, Hecht S, Gray N, Gupta P, Straif K. Smokeless tobacco and cancer. The Lancet Oncology 2008; 9(7):667–675.

    [PubMed Abstract]

  6. Blot WJ, McLaughlin JK, Winn DM, et al. Smoking and drinking in relation to oral and pharyngeal cancer. Cancer Research 1988; 48(11):3282–3287.

    [PubMed Abstract]

  7. Tuyns AJ, Estève J, Raymond L, et al. Cancer of the larynx/hypopharynx, tobacco and alcohol: IARC international case-control study in Turin and Varese (Italy), Zaragoza and Navarra (Spain), Geneva (Switzerland) and Calvados (France). International Journal of Cancer 1988; 41(4):483–491.

    [PubMed Abstract]

  8. Hashibe M, Brennan P, Chuang SC, et al. Interaction between tobacco and alcohol use and the risk of head and neck cancer: pooled analysis in the International Head and Neck Cancer Epidemiology Consortium. Cancer Epidemiology, Biomarkers and Prevention 2009; 18(2):541–550.

    [PubMed Abstract]

  9. Chaturvedi AK, Engels EA, Pfeiffer RM, et al. Human papillomavirus and rising oropharyngeal cancer incidence in the United States. Journal of Clinical Oncology 2011; 29(32):4294–4301.

    [PubMed Abstract]

  10. Adelstein DJ, Ridge JA, Gillison ML, et al. Head and neck squamous cell cancer and the human papillomavirus: summary of a National Cancer Institute State of the Science Meeting, November 9–10, 2008, Washington, D.C. Head and Neck 2009; 31(11):1393–1422.

    [PubMed Abstract]

  11. Gillison ML, D’Souza G, Westra W, et al. Distinct risk factors profiles for human papillomavirus type 16-positive and human papillomavirus type-16 negative head and neck cancers. Journal of the National Cancer Institute 2008; 100(6):407–420.

    [PubMed Abstract]

  12. Ho PS, Ko YC, Yang YH, Shieh TY, Tsai CC. The incidence of oropharyngeal cancer in Taiwan: an endemic betel quid chewing area. Journal of Oral Pathology and Medicine 2002; 31(4):213–219.

    [PubMed Abstract]

  13. Goldenberg D, Lee J, Koch WM, et al. Habitual risk factors for head and neck cancer. Otolaryngology and Head and Neck Surgery 2004; 131(6):986–993.

    [PubMed Abstract]

  14. Yu MC, Yuan JM. Nasopharyngeal Cancer. In: Schottenfeld D, Fraumeni JF Jr., editors. Cancer Epidemiology and Prevention. 3rd ed. New York: Oxford University Press, 2006.
  15. Yu MC, Yuan JM. Epidemiology of nasopharyngeal carcinoma. Seminars in Cancer Biology 2002; 12(6):421–429.

    [PubMed Abstract]

  16. Mayne ST, Morse DE, Winn DM. Cancers of the Oral Cavity and Pharynx. In: Schottenfeld D, Fraumeni JF Jr., editors. Cancer Epidemiology and Prevention. 3rd ed. New York: Oxford University Press, 2006.
  17. Guha N, Boffetta P, Wünsch Filho V, et al. Oral health and risk of squamous cell carcinoma of the head and neck and esophagus: results of two multicentric case-control studies. American Journal of Epidemiology 2007; 166(10):1159–1173.

    [PubMed Abstract]

  18. Olshan AF. Cancer of the Larynx. In: Schottenfeld D, Fraumeni JF Jr., editors. Cancer Epidemiology and Prevention. 3rd ed. New York: Oxford University Press, 2006.
  19. Boffetta P, Richiardi L, Berrino F, et al. Occupation and larynx and hypopharynx cancer: an international case-control study in France, Italy, Spain, and Switzerland. Cancer Causes and Control 2003; 14(3):203–212.

    [PubMed Abstract]

  20. Littman AJ, Vaughan TL. Cancers of the Nasal Cavity and Paranasal Sinuses. In: Schottenfeld D, Fraumeni JF Jr., editors. Cancer Epidemiology and Prevention. 3rd ed. New York: Oxford University Press, 2006.
  21. Luce D, Leclerc A, Bégin D, et al. Sinonasal cancer and occupational exposures: a pooled analysis of 12 case-control studies. Cancer Causes and Control 2002; 13(2):147–157.

    [PubMed Abstract]

  22. Luce D, Gérin M, Leclerc A, et al. Sinonasal cancer and occupational exposure to formaldehyde and other substances. International Journal of Cancer 1993; 53(2):224–231.

    [PubMed Abstract]

  23. Preston-Martin S, Thomas DC, White SC, Cohen D. Prior exposure to medical and dental x-rays related to tumors of the parotid gland. Journal of the National Cancer Institute 1988; 80(12):943–949.

    [PubMed Abstract]

  24. Horn-Ross PL, Ljung BM, Morrow M. Environmental factors and the risk of salivary gland cancer. Epidemiology 1997; 8(4):414–429.

    [PubMed Abstract]

  25. Chien YC, Chen JY, Liu MY, et al. Serologic markers of Epstein-Barr virus infection and nasopharyngeal carcinoma in Taiwanese men. New England Journal of Medicine 2001; 345(26):1877–1882.

    [PubMed Abstract]

  26. Hamilton-Dutoit SJ, Therkildsen MH, Neilsen NH, et al. Undifferentiated carcinoma of the salivary gland in Greenlandic Eskimos: demonstration of Epstein-Barr virus DNA by in situ nucleic acid hybridization. Human Pathology 1991; 22(8):811–815.

    [PubMed Abstract]

  27. Chan JK, Yip TT, Tsang WY, et al. Specific association of Epstein-Barr virus with lymphoepithelial carcinoma among tumors and tumorlike lesions of the salivary gland. Archives of Pathology and Laboratory Medicine 1994; 118(10):994–997.

    [PubMed Abstract]

  28. Siegel RL, Miller KD, Jemal A. Cancer Statistics, 2017. CA: A Cancer Journal for Clinicians 2017; 67(1):7-30.

    [PubMed Abstract]

  29. American Cancer Society (2017). Cancer Facts and Figures 2017Exit Disclaimer. Atlanta, GA: American Cancer Society. Retrieved March 29, 2017.
  30. Do KA, Johnson MM, Doherty DA, et al. Second primary tumors in patients with upper aerodigestive tract cancers: joint effects of smoking and alcohol (United States). Cancer Causes and Control 2003; 14(2):131–138.

    [PubMed Abstract]

  31. Argiris A, Brockstein BE, Haraf DJ, et al. Competing causes of death and second primary tumors in patients with locoregionally advanced head and neck cancer treated with chemoradiotherapy. Clinical Cancer Research 2004; 10(6)1956–1962.

    [PubMed Abstract]

  32. Chuang SC, Scelo G, Tonita JM, et al. Risk of second primary cancer among patients with head and neck cancers: a pooled analysis of 13 cancer registries. International Journal of Cancer 2008; 123(10):2390–2396.

    [PubMed Abstract]

An Introduction to Head & Neck Cancer

This was originally published by Cancer.net on 8/20/18 here.


Dr. Ezra Cohen explains how head and neck cancer is categorized, current treatment options, and the latest research developments in this introductory patient education video.


Transcript:

Cancer.Net®: Doctor-Approved Patient Information from ASCO®

Head and Neck Cancer: An Introduction

What is Head and Neck Cancer?

Ezra E. W. Cohen, MD, FRCP, Member, American Society of Clinical Oncology:

When we think about head and neck cancer, we are really talking about diseases or cancers that occur essentially above the clavicles, but not including the brain. Brain cancers are really a different entity. So these are cancers that start in the mouth or the throat. Often we see patients with cancers that originated in the thyroid gland or the salivary glands.

Essentially, that part of the body that is responsible for speech and swallowing, communication. And most of those cancers start on the surface, what we call the mucosa of those areas, the lining of the mouth or the throat or the tongue.

Types of Head and Neck Cancer

Dr. Cohen:

The primary types of head and neck cancer we really put into, I think, three major categories and they are based on their origin in terms of the tissue. So the main type, and I would say this accounts for 90 percent of the cancers that we see, we call squamous cell carcinomas. Those are cancers that start in the lining of what we call the upper air digestive track, so the mouth, the throat, the upper esophagus, the voice box or larynx, the upper trachea.  Those are all lined by a mucosal surface that when there is a cancer from it, we call those squamous cell carcinomas.

Then the second most common are thyroid cancers, they come from the thyroid gland. Those fall into a couple of categories, either medullary thyroid cancer or what in broad terms what we call differentiated thyroid cancer. And then the third category that we see most often are cancers that start from the salivary glands or salivary gland cancer.

Potential for Cure

Dr. Cohen:

When we think about a head and neck cancer diagnosis and when a patient gets a diagnosis of head and neck cancer, one of the things that they need to begin to think about are what their potential for cure is and potential for organ preservation.

Let me expand on both of those. In terms of this disease, the majority of patients that we see present with what we call local regional disease. And what we mean by that is that they have a tumor that often has spread to lymph nodes, but has not spread widely. So no metastases to other organs like the lungs or the bones or the liver and what we are really talking about is disease that is confined to the area of the head and neck.

And that’s important because those patients we would consider for curative intent therapy. We are going to try to cure that disease. And that becomes obviously incredibly important to both the patient and the physician. And the first thing that we think about when we see a patient with head and neck cancer is, is this a patient that can be cured of their disease.

If they are, that obviously takes us down a road of what we can do to cure that patient. And if they are not, that takes us down a completely different therapeutic avenue. Then we begin to think about well, as you can imagine, because the organs of the head and neck are so critical to day to day interaction, to really what defines us as human beings – our ability to talk to each other, our ability to have a meal, to eat normally, our facial expressions.  So much of what we do as people, as humans happens above the clavicles.

And so functional preservation becomes so important in patients with head and neck cancer, especially ones that we are going to try to cure. So the next question that we ask is how can we cure this patient and return them to normal function. And that is exactly the questions that patients should be asking their physicians. Do I have, can I be cured of this and if I can be cured of this, how can I maintain my normal activity once I am done with therapy?

And then we need to think about what are the other medical professionals that are going to be important in this person’s care. So because many patients have, will get radiation to the mouth or the oral cavity is going to be included in the radiation field, dentists and dental professionals become incredibly important to the ongoing care.

You can imagine that as we, as patients go through therapy they are going to have trouble swallowing. So nutrition and speech and swallow therapists become incredibly important.

Treatment Options

Dr. Cohen:

Going back to the idea that many of our patients will present with local regional disease, the main treatment option really focuses on curing these patients. And when we talk about curative intent therapy, we are really talking about three major modalities – surgery, radiation therapy and medical oncology or chemotherapy.

And what we’ve done really for the last couple of decades is learned how to integrate those three modalities to produce the best outcomes possible. For some patients it is going to be surgery upfront, possibly followed by radiation or chemotherapy and radiation. For other patients, we want to, and for many patients, we want to think about a non-surgical approach in an attempt to preserve function and preserve the organ.

And then lastly, I do believe it’s very important to ask about clinical trials. Because not only is this the way that we move the field forward, but honestly, clinical trials offer novel therapies to patients, new approaches to patients that very often prove to be the next standard of care, especially now with the excitement around immunotherapy. So I think it is very important to ask what clinical trials are available to me for the disease that I have.

Beyond that, I think the important things to ask are what should my caregivers be thinking about, what support team do I need to have in place. And it is good to think about that proactively and get that in place. How much help will I need as I go through this treatment and who is going to be available to supply that help.

Latest Research Developments

Dr. Cohen:

When we think about where the research is going and the most recent research advances in head and neck cancer, I really like to group them into two categories. The first is what we are learning about the cancer and our better understanding of really the biology of this disease. And the second falls into what are the new therapies, what treatments are coming online or about to come online that we can take advantage of to improve outcomes for patients.

But we are learning that clearly there are two distinct types of squamous cell carcinoma, the head and neck. One is related to a virus called human papilloma virus or HPV, the same virus that causes cervical cancer and some other cancers. And we are understanding that HPV related head and neck cancer behaves a lot differently than non-HPV related head and neck cancer.

And what I mean by that is the patients tend to be younger, they are often non-smokers and non-drinkers. And that is a real, that is a very important thing to point out. Because we are learning as practioners is that patients don’t need to smoke to be at risk for head and neck cancer. And in a non-smoker, we need to be still concerned if somebody begins to complain of symptoms around the head and neck area, pain, a lump in the neck. We need to be very concerned and begin to think about is this possibly a viral related cancer, even in a non-smoker and patients, of course, should be aware of that as well.

So HPV positive head and neck cancer behaves differently. And then HPV negative cancer, which is often related to tobacco exposure, occurs in patients who are a little bit older. It has a different presentation in terms of where it occurs, it often occurs in the voice box or the oral cavity. And again, it is often associated with, especially cigarette smoking.

We have also begun to understand that there are mutations and alterations that we can target specifically. So for instance, there are patients who have mutations in certain pathways or in certain genes that now we have drugs that specifically target those genes.

We have also begun to understand that immunotherapy is going to play an incredibly important role in this disease for both HPV positive and non-HPV related head and neck cancer. And that we are seeing some incredibly exciting data with the first wave of immunotherapy drugs in this disease. In fact, now we have randomized data of an immunotherapy drug versus standard of care in patients that are current in metastatic disease that are showing a dramatic improvement for immunotherapy.

And truly, this is just the first step, the first drug that has shown this type of efficacy. We are going to see many, many more in the next few months and an explosion, really, in the next few years for immunotherapy in head and neck cancer.

Where to Get More Information

Dr. Cohen:

For head and neck cancer, there’s some especially relevant websites that would be worth looking into. Cancer.Net is a site designed by the American Society of Clinical Oncology specifically for patients to address patient questions, patient needs, caregiver questions and needs. And it’s really geared towards the patient. So Cancer.Net would be certainly one of those.


[Closing and Credits]

Cancer.Net®: Doctor-Approved Patient Information from ASCO®

ASCO’s patient education programs are supported by Conquer Cancer Foundation of the American Society of Clinical OncologyConquerCancerFoundation.org 

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Empowered! Podcast: Meet Andrea Conners

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.

 


Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life from Patient Empowerment Network on Vimeo.

After Diana’s cancer diagnosis, she was told that she had only months to live. But, after meeting fellow head and neck cancer patient Sajjad Iqbal online, Diana’s path changed dramatically and she is now cancer-free. Hear their inspiring story about the power of connecting with other patients.


Transcript:

Sajjad:                        

My name is Sajjad Iqbal. I am a physician and also a cancer patient. I have the honor of serving on the board of Patient Empowerment Network.

Diana:                         

I’m Diana Craig from Auckland, New Zealand.

Sajjad:                        

I was diagnosed with a gland cancer, which is a salivary gland, on the left side of the face. The actual histology was a salivary duct carcinoma. It was diagnosed in February of 2002.

Diana:                         

In January of 2018. I was diagnosed with squamous cell carcinoma HPV 16 on my tonsil and soft palate.

Sajjad:                        

I do a lot of counseling for the cancer patients and mentoring and advocating and all that. And as a part of that, I have joined a head and neck cancer support group, which is based in New Zealand. It’s on Facebook. And there are some great people there who advise together cancer patients. Diana posted a cry for help back in May of this year, May of 2019, where she was just given the news that her cancer had recurred in her lungs and near her trachea. And her oncologist gave her a very grim prognosis and he thought that the medication had a very small chance of success.  

And he told Diana she had a few months to two years to live. Diana was devastated. She posted on that Facebook group, and I reached out to her to introduce myself, to tell her how I have managed my own cancer, and I told her that I could try to help her if she would be willing to share the information with me.

Diana:                         

Initially, I hadn’t heard of him before.

And I felt I needed to do some research, and I was told by everybody what a good guy he is, and to absolutely go down that road. So, I happily gave my information and certainly after the first conversation or interaction with him, I knew I was in good hands. Very much so. It was, to me, I used to call him my angel, my guardian angel, because I really felt safe and informed and encouraged. And his mantrais hope and determination and that is such a valid mantra when you go through cancer.

And it’s something that I said to myself oftentimes because it was so poignant, and it’s everything that you have to be and do to empower yourself and to be proactive, to find the best possible outcome for yourself.

Sajjad:                        

You know, as you know, I have written a book about my amazing cancer journey. The book is called Swimming Upstream. And a lot of other people have found it very inspirational. So, my story was not a whole lot different from Diana in this respect: that I was given a very grim prognosis back in 2002.

I was told that I had less than 30% chance of surviving for two years and I was also told that there was no five-year survivors with this cancer. And I made it my goal to beat the odds. And I used to say that in that case, I’ll be among the 30% and if no one has survived five years, well, I’ll be the first one. So, the hope and determination that Diana just mentioned, that’s my motto. Hope and determination. And I tried to instill that in Diana.

Diana: 

It certainly empowered me or put me in the right direction as to, I mean, I like to be moving, I like to be able to fight the fight if I know where to fight to. And also, know what questions to ask. I mean, when you’re in that situation, you are told how it is. And you don’t know what you don’t know. And unless you’ve been informed by somebody else or do the research yourself, and even then, that’s pretty dubious, because you stumble across information that you don’t want to know, and a lot of it’s scare tactics. But with his knowledge, with his background, with his first-hand experience of going through what we have gone through, gave me the confidence to do everything that he said.

Sajjad:                        

And I always recommend to my friends, other patients, that going to your oncologist about the cancer treatment is so much different than going to a doctor for your blood pressure or your bronchitis or so on.

This is an area where we need to be fully prepared. We need to go in and have a dialogue with our doctors who are treating our cancer and this is a matter of life and death. Literally, life and death. So, there is no room for just sitting there passively and just listening to everything and agreeing to everything. We must ask a lot of questions to our doctor. They should be, not only willing to answer our questions, but they should be welcoming our questions. So, if a doctor does not welcome your questions, does not give you plenty of time, does not explain everything that he or she wants to do, then that’s not the right doctor for you. And you’ve got to move on, and quickly.

Diana:                         

Where would I be without meeting Sajjad? I would have no hair at this point. I would be in the middle of chemo and probably K-truda. I don’t believe that I would have such a radical improvement so quickly. Because mine had gone after three infusions, which is nine weeks. So, I floundered the first time because I felt like I needed the help and I couldn’t get any. And the last time, I felt so much more in control, and anybody would think I’m a control freak. And let me tell you, I’m not. At all.

And also, being on my own, as well, I didn’t have a partner there to talk to. It was heaven-sent. And I said to him, “If I come out okay, I’m going to come and see you.” And here I am. Coming to see you. Because it meant so much to me. It really meant so much to me. It really did.

Sajjad:

Yes, it did.

The medical science is moving at an astonishing pace to find new medicine, new modalities, to treat cancer. We cannot be  – the patient must not get bogged down in the statistics of, oh you have this percent chance of survival, or this percent chance of death. Because those numbers don’t mean anything anymore. They’re old numbers. And to fight the cancer, we need our immune system to be involved in the fight.

If we get depressed, if we lose all the hope, the immune system shuts itself down, and that helps the cancer. So, number one thing is to always have hope. Always remain optimistic. And number two is determination. You determine that you are going to fight this and you are going to survive. And then, having those two tools at your disposal, become the empowered patient. Learn as much as you can about your cancer. Talk to other people, go to the support groups. And, again, let me plug Patient Empowerment Network. Go to our website, learn about the cancer. Then go to your doctor and question them and find out how you can improve your treatment. And that’s the way you fight cancer.

Just Diagnosed With Head and Neck Cancer: Answers from an Expert

This was originally published by Cancer.Net on April 12, 2018 here.

Dr. Kathryn Gold is a medical oncologist specializing in the treatment of head and neck cancer and lung cancer at the University of California San Diego Moores Cancer Center. She is also a clinical investigator, with research focusing on development of new ways to treat cancer.

What is head and neck cancer?

Head and neck cancers often start in the moist surfaces that line the mouth, throat, and nose. Most of these cancers are a type called squamous cell carcinoma. Squamous cell carcinoma begins in the flat squamous cells that make up the thin layer of tissue on the surface of the structures in the head and neck. Other rare cancers can develop in the salivary glands or the skin of the head and neck area. This post will mainly cover squamous cell carcinoma of the head and neck.

What causes head and neck cancers?

Drinking alcohol and using tobacco increase the risk of head and neck cancer. Any type of tobacco use—cigarettes, pipes, chewing tobacco, and cigars—can increase the risk of head and neck cancer. Also, the risk of head and neck cancer increases as people get older. Most head and neck cancers occur in people older than 45. They are more common in men than in women.

Some head and neck cancers are related to the human papillomavirus (HPV). This is the same virus that can cause cervical cancer and other types of cancer. In general, head and neck tumors caused by HPV have a better prognosis than tumors not caused by HPV. Prognosis is the chance of recovery.

The most important thing a person can do to reduce their risk of head and neck cancer is to stop using all tobacco products. Avoiding drinking lots of alcohol also reduces risk. Vaccines against HPV can prevent the strains of HPV that cause some head and neck cancers. The HPV vaccine is most effective when it is given before any exposure to HPV. Vaccination is currently recommended for many children, adolescents, and young adults. Good dental hygiene may also reduce the risk of head and neck cancers.

What are the symptoms of head and neck cancer?

Symptoms of head and neck cancer can include:

  • Difficulty swallowing
  • Sore throat
  • Changes in voice
  • A sore that does not heal
  • A lump in the neck

Other, less serious conditions may also cause these symptoms. That’s why it is important to discuss any new symptoms with your doctor.

How are head and neck cancers diagnosed and staged?

If the doctor suspects you may have head and neck cancer, the first step is to have a detailed physical exam focused on the head and neck area. However, a diagnosis of head and neck cancer can only be confirmed with an examination of a tissue sample under a microscope. This tissue sample is removed during a procedure called a biopsy.

Imaging studies, such as computed tomography (CT) or positron emission tomography (PET) scans, are often used to determine the extent of disease, called the stage. Knowing the stage of the cancer helps the health care team make decisions about the treatment plan. Most head and neck cancers are staged using the TNM staging system:

  • T stands for primary Tumor: Where the tumor is, whether it invades other structures, and how large it is. T stage ranges from T0 to T4, with the higher numbers representing larger, more invasive tumors.
  • N stands for lymph Nodes: Whether or not there are any lymph nodes involved, how many nodes are involved and how large they are, and whether lymph nodes on 1 or both sides of the neck are involved. N stage goes from N0 to N3, with N0 meaning no lymph nodes are involved and higher numbers representing more extensive disease in the lymph nodes.
  • M stands for Metastasis: Whether or not the cancer has spread anywhere outside the head and neck area. M0 means that there are no signs that cancer has spread. M1 means that cancer has spread elsewhere.

The parts of the TNM system are combined into a single stage group used to describe the cancer.

How are head and neck cancers treated?

Surgery, radiation therapy, chemotherapy, targeted therapy, and immunotherapy can be used to treat head and neck cancer. Often, many types of treatments are used together, for example, surgery followed by radiation therapy or radiation therapy combined with chemotherapy. Management of head and neck cancer usually requires a team of doctors and other medical professionals, including nutritionists/dietitians and speech language pathologists.

What are the side effects of head and neck cancer treatment?

Different treatments for head and neck cancer cause different side effects. If radiation therapy is recommended, common side effects often include fatigue, weight loss, and pain with swallowing. Side effects of chemotherapy can include nausea, low blood counts, and changes in taste. Some of these side effects, like nausea, tend to go away relatively quickly when treatment ends. Other side effects, like fatigue and discomfort with swallowing, can take longer to improve. Some side effects may be permanent.

It is important to have an experienced medical team managing the treatment of head and neck cancer. Many medical professionals, including nutritionists/dietitians, speech language pathologists, dentists, and dental hygienists, play a critical role in managing short-term and long-term treatment side effects. Counselors and support groups can be helpful as well. Rehabilitation will be a key part of the recovery process.RELATED RESOURCES:

Overview: Head & Neck Cancer

Head and Neck Surgeon, Dr. Namou Kim provides and important overview of what to expect with Head and Neck Cancer

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee shares the benefits of meditation and yoga and explains how mindfulness can affect your overall health.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

See More From The Fact or Fiction? AML Series


Related Resources

Your AML Navigator

Facing a Cancer Diagnosis: Advice From An Expert 

What is Personalized Medicine?

Transcript:

Patricia:

How about this one? A positive attitude and mindfulness can improve treatment response.

Dr. Lee:

Absolutely. Absolutely. Treatment for leukemia can be tough. Some of the treatment involves intense chemotherapy. Treatment for leukemia can involve stem cell transplant. And a key important aspect of treatment is being healthy and being optimistic about treatment, because a lot of treatment can have side effects, and side effects can be not as apparent if you are physically more active, and in a good state. So, I think that having a positive outlook is very, very important.

Patricia:

Quality of life issues are difficult for some people. How do you talk with your patients about their quality of life, and staying healthy during their treatment?

Dr. Lee:

So, quality of life is absolutely important. I mean, the whole point of treating leukemia and any other treatment is not only to address the leukemia, but also have good quality of life. So, when discussing treatment options, you always have to balance the quality of life and side effects versus potential benefits. So, that’s always on our mind when discussing potential treatment options, and how it impacts the quality of life. Throughout the treatment process, we always tell our patients that being active, and having a good quality of life, and having good nutrition, is absolutely important, because that’s a key aspect of treatment for leukemia.

Patricia:

What about meditation and yoga for coping with anxiety around cancer diagnosis and treatment? Mindfulness.

Dr. Lee:

Absolutely, absolutely. Those can help. Especially having leukemia, it’s very life-changing, so a typical way that patients are diagnosed with acute leukemia is patients live a normal life, and then they develop, all of a sudden, abnormalities. And they’re diagnosed with acute leukemia, and it can be very sudden. And it can be very difficult. So, that can understandably make patients have anxiety, and other issues.

And I believe that meditation, and yoga, and other exercises can absolutely help cope with this.

Patricia:

And there’s tons of resources for meditation and yoga out there, that are reliable.

Dr. Lee:

Yes. Yeah.

Patricia:

Yeah. Should patients regard yoga and meditation as part of their treatment, as part of their self-care, during this process?

Dr. Lee:

Absolutely, absolutely, if the patients are into meditation and yoga. Meditation is very harmless, and it can absolutely help in terms of guiding their mind through their treatment journey. Yoga is good if you’re physically able to do it. So, one caution is that, if you’re not someone who does yoga normally, then you should start off slow, and not push yourself as aggressively.

Does Cannabis Oil Have a Role in Cancer Treatment?

Does Cannabis Oil Have a Role in Cancer Treatment? from Patient Empowerment Network on Vimeo.

Is it just a trend or could cannabis oil truly have a role in cancer care and treatment? Dr. Sangmin Lee share his perspective.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

See More From The Fact or Fiction? AML Series


Related Resources

AML Research and Internet Claims Program Resource Guide

Assessing Credible AML Resources and Identifying Research Scams

Understanding and Managing AML Treatment Side Effects

Transcript:

Patricia:

The use of cannabis oil is becoming prevalent. Does this have a role in cancer care and treatment?

Dr. Lee:

Absolutely. So, we use it for a lot of side effect management. So, cannabis can be helpful, in terms of appetite and nausea, for example. So, we often use it in conjunction to manage some of the side effects that patients can have throughout their treatment.

You should consult with your medical team, and of course, I should say that laws differ state by state, so it doesn’t apply to every state. But when it’s available, it can be a valuable addition.

Patricia:

Sure. Discuss that with your physician.

Sugar Feeds Cancer: Fact or Fiction?

Sugar Feeds Cancer: Fact or Fiction? from Patient Empowerment Network on Vimeo.

Does sugar feed cancer? Dr. Sangmin Lee addresses the rumored connection between sugar and cancer.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

See More From The Fact or Fiction? AML Series


Related Resources

The Pro-Active AML Patient Toolkit

Assessing Credible AML Resources and Identifying Research Scams

AML Treatment Side Effects: What’s Fact and What’s Fiction?

Transcript:

Patricia:

Okay, a little more fact or fiction, here. This is what we’ve heard from patients who have AML about cures, okay? Sugar feeds cancer, and severely restricting my diet will treat my AML.

Dr. Lee:

That’s not proven so far. There are some laboratory studies, especially with keto diets, showing some promise, maybe. But then it hasn’t been proven in humans, yet. The most important thing about AML treatment is actually nutrition. As patients go through AML treatment, it’s very important to stay healthy, and part of that is nutrition.

So, starvation, in general, is not recommended, because nutrition is so important, in terms of being able to undergo the treatment, as well as treatment visits, and everything. So, we recommend that nutrition is very important.

Are Clinical Trial Participants Monitored More Closely?

Are Clinical Trial Participants Monitored More Closely? from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee discusses the monitoring of clinical trial participants and the measures taken for patient safety.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

See More From The Fact or Fiction? AML Series


Related Resources

AML Genetic Testing Explained

Advice for Newly Diagnosed AML Patients

The Power of Positivity: Advice from an AML Patient

Transcript:

Patricia:

How about this next one? I am monitored more closely in a clinical trial.

Dr. Lee:

In some cases, it’s true. Clinical trials do have certain monitoring visits, in terms of doctor’s visits, laboratory tests, and physical exams.

The purpose of that is to make sure that it is safe. So, the purpose of monitoring closely, in a lot of cases, is for the patient’s safety. We are testing drugs in a lot of clinical trials, for which the complete safety profile, as well as efficacy profile, is not known. So, the purpose of closer monitoring is to make sure whatever we’re doing is safe, and if there are any unexpected side effects, then it allows us to address the side effects, as well. So, it’s mainly for patients’ safety.

Will Clinical Trials Cost You? The Facts.

Will Clinical Trials Cost You? The Facts. from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee reviews the financial impact associated with clinical trials, including a discussion of what expenses are covered for participants.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

See More From The Fact or Fiction? AML Series


Related Resources

Confronting Fears About Clinical Trials

AML Research and Internet Claims Program Resource Guide

Second Opinions in AML: The Importance of Moving Swiftly

Transcript:

Patricia:

All right, how about this one: I may have unexpected costs if I join a clinical trial.

Dr. Lee:

So, typically, that’s actually, usually not true, because how it works is that the clinical trial drugs, and that there may be extra procedures or visits associated with clinical trials.

And what usually happens is that the sponsor of the clinical trial provides the cost of the drug, intervention, and anything extra that are required for the clinical trial. So, in the end, the cost of participating in a clinical trial should not be any more than receiving standard care treatment.

In some rare cases, there may be stipends associated with the clinical trial, especially with travel. So, if you participate in a clinical trial, and you live far away, then you should ask to see if there is any stipends available, especially for travel.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

Patient Profile: Kirk Beck

Patient Profile

Kirk Beck

Prostate and Head and Neck Cancer

What is significant to Kirk Beck is not that he’s had cancer. He delivers his story with minimal detail about his diagnosis, his treatment, and the subsequent life-threatening complications he endured as casually as he might tell you what he had for breakfast. It’s not until his wife Kelly joins the conversation that the full impact of Kirk’s medical history becomes clear.

“He wouldn’t have lived to be 50,” says Kelly of the first time Kirk was diagnosed with cancer. They weren’t married then, but it’s not lost on Kelly that their marriage never would have happened if he hadn’t survived. “It was caught very early and he was lucky,” she says. What’s lucky is that Kirk’s prostate cancer was detected at all. It was the mid-90s and he was 44, much too young to have a prostate screening in those days, but Kirk had a friend with the disease so during a routine physical he insisted, despite his doctor’s protest, that he get tested.

That test ultimately resulted in his diagnosis and a radical prostatectomy. Through the help of his brother, a physician, he sought treatment at Johns Hopkins Hospital where the surgery was done using the “nerve-sparing” technique — which helped prevent side effects such as urinary incontinence and sexual dysfunction. The surgery was a success, the cancer hadn’t metastasized, and Kirk didn’t require chemotherapy or radiation. “I got operated on and came home,” he says and in the 20 plus years since he’s had no recurrence or side effects.

He did, however, get another cancer diagnosis. This time he had tonsil cancer in October 2005. Within days his tonsil became extremely swollen. He had surgery the next month, followed by chemotherapy and radiation which was accompanied by a drug designed to protect his salivary glands from the radiation. This time there were complications. By New Year’s Eve he was back in the hospital and then again, after his second round of chemo, at the end of January 2006. He had what he calls episodes of extreme pain. “It was excruciating. Unbearable,” he says.

What he had was a blood clot, portal vein thrombosis, which is a rare condition to which he had a very rare reaction, and his small intestine had begun to die. He was unable to digest food and was vomiting a lot. His body had created what is known as collateral veins which were enough to keep him alive, but not enough to prevent damage to his small intestine. The hospital told Kelly that there was nothing more they could do. He was too high risk for surgery, they said. She was advised to contact hospice care.

“If I had listened to them, he would be dead. I just knew deep down this wasn’t supposed to be happening this way,” says Kelly, who instead of calling hospice called Kirk’s brother, the doctor, and got Kirk back to Johns Hopkins where they were able to save his life.

Of course, it wasn’t that simple. Kirk required intensive and careful treatment of his clot, continued radiation for his cancer treatment, and surgery to remove the damaged area of his small intestine. The process was scary and daunting and full of unpleasant details, but that is not what Kirk chooses to focus on. “If you look at it properly, it’s a gift. Not a penalty. Not a punishment. It’s an opportunity to reconsider your perspective on life,” says Kirk.

“It was a great experience. It might be strange to say, but its what I believe. It’s not something I want to go through again, but it was priceless. It changed my entire life and made me a lot more appreciative.” That is what is significant to Kirk. Not having cancer twice. Not having a life-threatening blood clot, but the living that he has done and the opportunity that these experiences have given him to help others. “I’ve been able to share my story and offer help to others that I couldn’t have offered without the experience. People knew I was speaking the truth. There’s no fiction in it. I try to give people a real and truthful perspective and that is invaluable.”

Kelly has a similar take away. She says the experience afforded her a new perspective, but also made her a strong advocate for patient empowerment. “Don’t always accept what they say. Be an advocate,” she says. “If you have a bad feeling and you are not getting answers, go elsewhere. There are so many places you can go for information. Take advantage of every opportunity. Having a good, strong advocate will save your life.”

In addition to his two bouts with cancer, Kirk has had a number of pretty considerable medical issues over the course of his 67 years, but he’s never let any of it slow him down. “Everyone has their own journey and also their own destination,” says Kirk who believes that a positive attitude is crucial to recovery. “You just can’t allow yourself to be destroyed by these situations.”