Patient Profile: Jeff’s Diagnosis of Parotid Cancer

On April 27, 2020, I received an email plea for help from Debra after she had read my book. Deb’s husband, Jeff, was struggling with a very malignant form of parotid cancer called Acinic Cell Carcinoma that, despite surgery and radiation, had spread to his chest and spine. Worse yet, there were no clear treatment choices available. Over the next 11 months, Deb & I have maintained an almost constant contact via emails and telephone chats. It has been my honor & privilege to get to know Deb. I am most impressed by her innate intelligence, rock solid determination and steadfast perseverance. Jeff is alive today primarily due to Debra’s tireless efforts to find a solution. 

On my request, Deb has penned this story of Jeff’s illness. I sincerely hope that it will inspire other patients and caregivers to become more empowered. Remember, Knowledge is Your Superpower.  Sajjad Iqbal, M.D.


 My husband, Jeff, was diagnosed with high-grade acinic cell cancer of the parotid gland in February of 2018 at the age of 65. He was a very young, healthy 65, who rarely saw a doctor and needed no regular medications. For 37 years he was a teacher and coach at a small school in Iowa. We have now been married for 47 years, have three children and three grandchildren. Jeff retired early from teaching when he was 61, but continued coaching for several more years. He also did small construction jobs with our son. We spent a lot of time traveling by car throughout the United States. It was a shock to both of us to hear that Jeff had this disease since he seemed to be so healthy. 

Several years before Jeff was diagnosed, he mentioned a small lump behind his ear. During a brief physical he had, he asked his doctor about it and was told to keep an eye on it and, if it got bigger, to see a doctor. In January of 2018, he noticed it was getting bigger so he saw the doctor. He was told he needed to get a biopsy but it was probably just a blocked salivary gland. As soon as I heard that, I figured it was cancer as Jeff’s mother had been diagnosed with salivary gland cancer many years before. Hers was a slow growing adenoid cystic cancer that was treated with surgery only. He had his biopsy done at a local hospital and when they said it was cancer, we had them make him an appointment at Mayo Clinic in Rochester, Minnesota which is only a couple of hours from our home. 

He had further testing done at Mayo which also showed a lesion at the top of his spine. In March of 2018, he had two separate surgeries to remove the tumors. Cancer was also found in 9 of 21 lymph nodes. He came through the surgeries with no problems. Soon after, he received six weeks of radiation on both of those spots. This was much tougher on him than the surgeries. His neck was badly burned, nausea, no appetite, etc. He made it through and slowly got back to feeling normal. At that time, we were told that chemo wouldn’t help him so he never received any. Three months later, a scan showed a nodule on his chest wall. They did a biopsy and found it to be the same type of cancer. He had a cyroablation on that spot.

Two months later, we found out that the cyroablation had not worked, the spot was bigger and there were several spots on bone. He had Foundation One testing done on his tumor and it showed very few mutations. There was only one mutation, RET, that had a possible treatment at that time. There was a clinical trial at Mayo for a targeted drug for that mutation and they were able to get him in. He started on that in February of 2019. He experienced no side effects and the chest wall tumor stayed about the same the entire time he was on the trial. Unfortunately, though, it was not stopping the bone mets. He had radiation three days in a row on a couple of them when they started causing him pain. Because it was not stopping the bone mets, he discontinued the trial. His oncologist told us that he didn’t know of any clinical trials at that time that would help him. The only thing he had to offer was chemo and possibly Keytruda but he was doubtful they would help very much. Needless to say, this left us feeling lost as to what to do next. 

The Mayo oncologist had told us that, in his opinion, clinical trials were the best way to go as you could get the newest treatments and you would be closely monitored. That is what I decided to look for first. Luckily, since Jeff was first diagnosed, I had been doing research on his cancer and possible treatments. There wasn’t a lot as it is a rare cancer. I have no medical background but was determined to figure things out as much as I could and find something that might be able to help. I found three clinical trials that I thought might work for Jeff. These trials did not exist when Jeff was first diagnosed. I sent them to his Mayo oncologist who had told me that he would be willing to look over a clinical trial if I found one. He agreed that the one I was most interested in looked like a good possibility and one of the trial locations was Iowa City which is about 3 hours from us. This is a trial that focuses on the genetic makeup of the cancer instead of the type of cancer. One of the mutations that Jeff has is FANCA and this trial was the first one I found where FANCA was one of the mutations they were looking for. Also, Jeff’s mother, who also had salivary gland cancer, is a carrier of the FANCA gene. There is no known relationship between the FANCA gene and salivary gland cancer but I feel there must be a connection. It is a rare cancer and to have a mother and son have it must be extremely rare. Our children have been tested for this gene and we discovered that our son is also a carrier. 

It was in February of 2020 when we went to Iowa City to try to get Jeff into the trial. We found out that they had changed the requirements for the trial and now you had to have had chemo in order to be accepted. The doctor started Jeff on the oral chemo drug, Xeloda, and told us that if anything grew, he would stop the chemo and try to get him in the trial. Jeff was also having some rib and back pain and that was treated with five days of radiation therapy. Following those treatments, he had some heartburn issues for a couple of weeks after which it slowly resolved.

At first, the chemo wasn’t too bad. Soon though, there were many nasty side effects; peeling palms and bottoms of feet, nausea, no appetite, etc. He did not feel up to doing much and spent a lot of time sitting or lying down. He was on this about five months and decided to stop due to the side effects. He was having some back pain during his chemo and was prescribed a narcotic pain reliever. It helped the pain some, but caused constipation, so he had to take more medication for that. He told the doctors he did not like taking the narcotic drug and wanted to find another alternative. They tried one drug and the first night he took it he ended up fainting and having make a trip to the hospital. Needless to say, we stopped that drug right away! They said he was having nerve pain from his spine but were not able to find the exact source. He ended up having a vertebroplasty on his spine as they thought it might help his pain.

Unfortunately, it didn’t help the pain and he also started having a weird feeling of a tight band around his abdomen. We made a trip back to the Mayo Clinic to see a pain specialist there. He thought Jeff might be helped with a nerve block on either side of his spine. He had this done and, not only did it not help, it made the band feeling we were trying to get rid of feel even tighter! This was very disheartening as we really thought it would help. Iowa City had started him on Gabapentin for his nerve pain and had been slowly increasing the dosage. He was also started on a low dose of Lexapro and, between those two drugs, he started to feel less pain in his back. The “band” feeling is still there, but not as bad as it once was. He was finally able to get into the clinical trial in August of 2020. The drug he is on now is a parp inhibitor that targets the FANCA pathway. He has been on this drug for about seven months now with almost no side effects. The targeted tumor has shrunk quite a bit and the bone mets have stayed the same. Unfortunately, on his last scans, there was a new spot on his liver. He was allowed to stay in the trial as it is working on his targeted tumor and he is scheduled soon for microwave ablation on his liver. 

When one treatment stops working, I always look for a new clinical trial first.

It is hard, however, as so many of the trials are for certain types of cancer. Even though you discover (from the mutations) that a certain drug may help your cancer, you can only be in that trial if you have a certain type of cancer. I hope in the future there are many more trials based on the genetic makeup of the cancer rather than the type of cancer. The other problem is that the majority of trials are held at larger hospitals that are just too far away to go back and forth as often as needed. It would be great if there were a way to have some of the treatments done at a larger hospital in your own state. Also, if you have a rare cancer, it is much harder to find clinical trials. 

I have a library background and have always relied on books and articles to find information about various topics. Now that the internet is available that has been my most important tool at this time. Also, websites like PEN, providing patient’s stories, healthy recipes and classes are very helpful. These types of sites have really helped me feel not so alone and have given me much more hope than I have ever received from any oncologist. It is also over the internet that I connected with Dr. Sajjad Iqbal after reading his book “Swimming Upstream.” He has been very generous with his time and willing to give suggestions and advice as he has a cancer similar to Jeff’s. It has been a great comfort to me to be able to e-mail him to get his opinion on something or ask a question. He has also helped me feel more hopeful than anyone else I have talked to – not only by his words but by his courageous example. 

When Jeff was first diagnosed, he was still coaching track. The entire track team wanted to have a benefit for him and sold t-shirts and wristbands, and had a meal and dodge ball tournament to raise money for him. Jeff is a very popular guy in this rural school district and I know it meant a lot that his team did this for him. We have support from our family and friends and feel that we have people we can call if we need something. The pandemic has kept us from getting together with people as often as we would like but we are looking forward to that in the future. 

We know that there is a good chance that Jeff’s cancer may never be cured. If that is true, I would like the next best thing – for him to live as long as possible, as well as possible with the cancer. We have had three very good years living with it and working around his medical appointments. I will do everything I can to help him have more of those years. 

Jeff has handled this whole situation very well from the beginning. He is a pretty laid-back person who takes things as they come and isn’t much of a worrier. He has kind of set an example for me just by taking things as they come. I feel his job is to fight the cancer and my job is to help him fight the cancer. Our lives are pretty much the same as they were before he was diagnosed – only with a lot more doctor appointments! 

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

Download Guide

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.


If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.


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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 


This program is supported by Blueprint Medicines, and through generous donations from people like you.

Extended Quick Guide to Medicare

This guide was originally published by our partner, Triage Cancer, here.

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Quick Guide to Health Insurance Options

This guide was originally published by our partner, Triage Cancer, here.

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Financial Resources for Patients and Families

Financial Resources

Barriers to Clinical Trial Participation

 

What are some of the barriers to clinical trial participation? What is a virtual clinical trial? Should my doctor be speaking to me about my clinical trial options? Dana Dornsife, founder of Lazarex Cancer Foundation, speaks to the key barriers in trials and how COVID-19 has really opened the door for a lot of opportunity to engage with patients around clinical trials.

Barriers to Clinical Trial Participation

Barriers to Clinical Trial Participation from Patient Empowerment Network on Vimeo.

What is a Virtual Clinical Trial?

What is a Virtual Clinical Trial? from Patient Empowerment Network on Vimeo.

COVID and Clinical Trials

COVID and Clinical Trials: Has There Been a Shift? from Patient Empowerment Network on Vimeo.

Tomorrow’s Medicine Today

 

From PEN-Powered Activity Guide V, beloved medical oncologist Dr. Bora Lim of The University of Texas MD Anderson Cancer Center walks us through what a clinical trial is, the phase of how drugs get approved, and how the pandemic crisis has amplified the criticality of clinical trials.

What is a Clinical Trial?

What is a Clinical Trial? from Patient Empowerment Network on Vimeo.

How Do Drugs Get Approved?

How Do Drugs Get Approved? from Patient Empowerment Network on Vimeo.

Will Pandemic Transform Future of Clinical Trials?

Will Pandemic Transform Future of Clinical Trials? from Patient Empowerment Network on Vimeo.

Clinical Trials as an Empowerment Tool

Clinical Trials as an Empowerment Tool from Patient Empowerment Network on Vimeo.

The Power of Journaling During Cancer Treatment

There are two ways to fight cancer, both of which are equally as important. The first is physical and the second mental. Journaling might not be able to help with the physical symptoms, but easing the mind can truly help in such situations.

By providing a safe place to store your thoughts and experiences, you will be able to find a great source of power. If you have never thought about journaling before, this might be the perfect time for you to give it a try. Here are some important reasons why this might be a very great decision.

1. Keeping track of all important moments

Some people believe that battling cancer is only filled with negative moments and experiences. While that is true to a big extent, there can be plenty of memorable moments that you might want to keep track of. The beginning of your treatments is a moment that you can write about and think about when this situation is over.

Other important moments might include family gatherings, important presents you might receive, very bad and very good days that stand out in your treatment course. Just because a day way difficult doesn’t mean it should be considered bad. At the end of this difficult journey, you will be able to look back at everything you wrote and remember the good and bad times.

2. Helping ease certain symptoms

Another great reason why journaling can truly help cancer patients during their treatments is because of symptom management. Research has actually shown that journaling can help with combating symptoms and dealing with the physical size of things.

Writing about how you feel and what you are going through can help you sleep better and feel more energetic. Getting plenty of rest will allow you to feel less nauseous, be in a better mood and battle everything with a stronger will. The more you face your symptoms, the stronger you will feel through your treatment.

3. Fighting against the stress

The stress that can be caused by such a difficult diagnosis is great and can truly affect your mood and outlook on life. Being under stress can make you feel tired, mess up your sleeping schedule and make you feel more negative about everything. This is not ideal for any situation you are in in your life and there are ways to overcome it.

Journaling can provide you with a safe space to write everything you have in your mind. During your treatments, you will possibly want to appear strong in front of your family and you might not want to share everything you feel. You can write all your thoughts in your journal and let everything out. This way you will be able to handle everything you face and feel a lot less stressed.

4. Reminding yourself of things you love

When dealing with any hardship in life, it is important to keep thinking of things that bring you joy. Journaling has helped me create a notebook full of memories, which I can go through any time I need some positivity in my life. You don’t only have to put words into it but anything and everything that makes you think of memories and people you hold dear.

In your journal you can keep stickers, receipts, drawings and cards from loved ones. Then you can write how receiving these things made you felt. When the days get difficult and you are struggling, open your journal again. Read through everything nice you have collected and it can help you remember all the reasons why this difficult process is worth it.

5. Seeing all the progress you have made

Last but not least, another important reason why journaling is so helpful during cancer treatment is that it can help keep track of your progress. There are going to be many days that will be hard and many that will be good and filled with hope. In order to be able to go through both, it is important that you keep track of everything new that happens in your journey.

The good days will help you remember that things will get better. The difficult days will allow you to live in the moment and work on staying positive. Journaling this experience can also help your family better understand what goes on in your head and how they can help. After you have successfully put this difficult period of your life behind, you can even share your story with other patients through your journal.

Battling cancer every way possible

Journaling is a creative and fun activity that can help you deal with certain symptoms and negative thoughts during your treatment. Even if you have little experience with writing, journaling gives you the chance to get creative. You don’t need any special skills in order to journal. You just need a notebook, some fun colors and a few thoughts in your head.

Through writing about your experiences, you will be able to express how you feel and let everything run its course. This treatment course might be tough, but writing everything down will help you see just how much progress you are making. This can truly help you feel stronger mentally and physically and overcome this situation like a true warrior!

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

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  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.

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  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.

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  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.

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

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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  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.

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

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  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.

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  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.

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

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  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:

Take Care of Yourself and Your Family’s Health

Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

Oncology Social Worker Checklist

Resiliency Checklist During the Time of COVID-19


Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Turning Your Home Into a Sanctuary

In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

Daily Practices for Cultivating Awareness and Anchoring Yourself in Resilience

Resilience is our capacity to bounce back from the inevitable challenges of being alive. When challenges arise, our meandering minds can take us into various worrisome directions, leading to a host of negative emotional states and their subsequent adverse effects on our well-being.

Although we may not have control over the external factors in our lives or needless to say our genetic predispositions, we do have the capacity to cultivate inner psychological faculties that enable us to weather the storms of life with relative calm. For most of us, these internal resources are underdeveloped. They require intentional cultivation through the regular practice of actions that support their development. Among these inner resources are self-awareness, self-acceptance, and a secure inner base to fall back on.

What is Resilience?

What is Resilience? from Patient Empowerment Network on Vimeo.

Anchoring the Mind

Anchoring the Mind from Patient Empowerment Network on Vimeo.

Focusing the attention on the natural breathing process and body cultivates self-awareness and tends to have a calming effect on the mind. By doing so non-judgmentally, we accept the process as it is truly experienced. This is not an advocation of apathy towards our lives. To the contrary, by shining the light of awareness on our experience and accepting it as it truly is, we are given a clarity from which to make any necessary course corrections in our lives.

Awareness of Breath

Awareness of Breath from Patient Empowerment Network on Vimeo.

Awareness of Body

Awareness of Body from Patient Empowerment Network on Vimeo.

A secure base is supported by continually returning our attention to our breath and body when distracted by the meandering nature of the mind. By regularly practicing the activities here offered you can enhance your capacity to bounce back and calmly weather the fluctuating trials of life.


Broderick Rodell has a PhD in chemical engineering from the Georgia Institute of Technology and a Doctorate of Naturopathic Medicine from Bastyr University. His search for self-betterment led to his passion for mindfulness. He considers himself a dedicated student and practitioner of yoga including contemplation, meditation, breath work, and mindful movement. Broderick believes that through individual evolution we can all tap into greater possibilities within ourselves.