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
What is a Virtual Clinical Trial?
COVID and Clinical Trials
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?
How Do Drugs Get Approved?
Will Pandemic Transform Future of Clinical Trials?
Clinical Trials as an Empowerment Tool
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!
Bridgette Hernandez is a professional writer and editor for Subjecto. She loves helping her audience find
new ways to incorporate writing into their daily lives in order for them to overcome many different
difficulties. This is why she often teams up with different platforms to help spread this exact message. In
her spare time, Bridgette loves to read and spend time in nature.
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.
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 (2–5). 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 (6–8). 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 (9–11). 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:
Oral health. Poor oral hygiene and missing teeth may be weak risk factors for cancers of the oral cavity (16, 17). Use of mouthwash that has a high alcohol content is a possible, but not proven, risk factor for cancers of the oral cavity (16, 17).
Occupational exposure. Occupational exposure to wood dust is a risk factor for nasopharyngeal cancer (14, 15). 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 (20–22).
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):
- Hypopharyngeal Cancer
- Laryngeal Cancer
- Lip and Oral Cavity Cancer
- Metastatic Squamous Neck Cancer with Occult Primary
- Nasopharyngeal Cancer
- Oropharyngeal Cancer
- Paranasal Sinus and Nasal Cavity Cancer
- Salivary Gland Cancer
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?
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.
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.
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
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
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.
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
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
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 Oncology. ConquerCancerFoundation.org
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:
- 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
- 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
- However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
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.
Tips for Boosting Heart and Lung Health
Community Resources & Tools for Cultivating Resilience
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.
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.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
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?
Anchoring the Mind
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 Body
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.
Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:
Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.
Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.
Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.
Social and Emotional Repercussions of Cancer
In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:
Fear of Recurrence
Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.
Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.
It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.
Body Image and Self-esteem
Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.
Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.
Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.
Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.
Social and Work Life
Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.
You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.
About the author: Diane H. Wong is copywriter at write essay for me service. Besides, she is a professional nutritionist. So she is going to start writing her own blog. It can help her share her knowledge with others.
First and foremost, “surviving” cancer is amazing. After all, cancer is one of the deadliest diseases in the world! So, if you are a survivor, you are indeed worthy of praise.
There are many types of cancers out there. One thing that they all have in common is that they are a result of uncontrolled growth of abnormal cells anywhere in a body. Early detection of cancerous growth results in a good prognosis as there is nearly no definitive cure for any form of cancer at its late stages.
Again, whether yours was at its late-stage or not and you survived, you are a winner! At this point, you should hold no reserve about cancer resurfacing and instead THRIVE.
Now that you have survived cancer, the next step is reintegration back into society and doing the best you can to thrive while doing so.
1. Battle your fear & anxiety head-on
Long after getting cleared of cancer, survivors have to fight an emotional battle of fear and anxiety. No matter what the medical reports say about their health status, there is the seemingly never-ending fear of the cancer returning.
This emotional turmoil is insurmountable and almost never avoidable unless you normally just have a strong will. You must quench this fear so that you can thrive. A chat with your doctor is vital. Disclose whatever concerns you have about your health. Your doctor may even schedule frequent testing and care plans to make you feel better.
2. Be devoted to your physical therapy sessions
Cancer is usually for the long term. So, when the health providers eventually manage to get rid of all the cancerous growths, you may be left with a physical limitation like immobility. Such a physical limitation may make life less enjoyable, thus your doctor’s statutory recommendation for physiotherapy.
Be dedicated to treatment sessions and work closely with the physical therapist as well as your loved ones. Don’t be afraid to ask for continued support as you heal.
3. Try a new hobby
Don’t rush to get back to your old self before cancer. Try to enjoy the process more by finding new sports or leisure activities that fill your time.
So, instead of getting mopey and worrying over cancer resurfacing, try knitting for a change, go golfing, try swimming! There is nothing too small or too big to try, and the main goal is to get you taken by any activity other than sitting down and getting paranoid.
4. Consider returning to work
A defining part of getting reintegrated back into society after cancer is a career. If you were working before cancer, going back to work can help redefine your life.
If you weren’t, try finding a new skill or going job-seeking. This gives you a sense of normalcy, but even better, it occupies your time! Remember, one of the most important ways to thrive after a battle with cancer is to not dwell on the past and simply enjoy the moment.
5. Find intimacy with your loved ones
There is nothing better than speaking to people who genuinely love you. Such emotional talks are sure to renew your confidence and help you build strong emotional support. If you are dating or married, it’ll help a great deal to bear your thoughts before your partner. Keeping it all inside won’t help and may even make you distant from them.
6. If possible, start exercising
Numerous benefits accompany exercise. These range between boosting your physical endurance to giving your mental health a much-needed boost.
Aside from that, nothing beats that sense of accomplishment that comes with completing an exercise session every day. Before starting an exercise regime, tell your doctor; and you may have him refer you to a physical therapist with knowledge of care for cancer survivors like you.
If you are strong enough to exercise independently, start small with home workouts and build your way up to going for a walk at the park and then the gym.
7. Make A List of Your Fears
This is on emotional terrain. Write down your deepest fears about life after cancer or what you think may prevent you from enjoying this new phase. This may include fear of the cancer returning, fears about your health overall, concerns of satisfying your partner in bed like you once did, fears of losing your job or doing poorly at it, and many more others.
No matter how many they are, penning these fears down on paper can help you tackle them. After writing, you may even discover that some of these are so insignificant and shouldn’t be any trouble. Either way, you are tackling these problems head-on.
8. Let go of the past
This is an essential task if you want to thrive following a battle with cancer. Letting go of the past may be harder for people who have been fighting bouts of cancer over a significant number of years, but there is indeed nothing better than finding a new you.
Cancer puts a dent in your mental health, so it may pose a challenge to let go of your history. If this is you, speaking to a counselor or even your doctor will be beneficial.
9. Accept that there are going to be bad days
It is a part of living to have good and bad days. As a cancer survivor, you can’t escape this, and you may even be more vulnerable, having battled one of the world’s deadliest diseases. As you strive to get back to normalcy, you have to realize that not every day will be good and that the process may be a lot harder than you expect.
An optimistic attitude and never giving up are crucial to overcoming the dismay or depression that may set in when you’re not successful at something you try to do. You can also create a backup plan for such days e.g., take a walk with your partner, go to the cinema, etc.
10. Share your experience with support groups
There is nothing like working closely with people who have had similar experiences with you. Whether they are still battling cancer or not, speaking to others about your own experience surviving the disease will give them a ray of hope. It will equally do you a lot of good.
Cheryl Hearts is a passionate journalist from Boston, Massachusetts. She decided to dedicate her life to writing because she thinks this way she can be the most useful for the community. After obtaining a Master’s degree in Journalism, Cheryl started running her own blog CherylHearts.com where she’s covering topics of great interest to society.