Cancer Survivors: Managing Emotions After Cancer Treatment

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.

Pain

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.

Depression

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.

Spirituality

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.

Survivor’s Fault

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.

Relations

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.

10 Ways of Thriving After Cancer

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. 


Resource links: www.aicr.org, www.curetoday.com, www.inovanewsroom.org

PEN-Powered Activity Guide

Empowered! Podcast: Meet Andrea Conners

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

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


How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer.  The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for.  You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb.   Breast cancer survivor, Nicole McClean[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease:  “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties.  Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc),  is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.”  Breast  surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.”  The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“  

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises,  “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.”  Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

Don’t ask her what she needs, just do something that she needs,”  recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help.  You may have to drop a high priority task but when the call for help comes. Go!” 

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again. 

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy.  Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense)  recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget. 

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbour who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD[2], author of Braving Chemo, writes:  “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things. 

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.”  Breast cancer blogger, Sheri[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources  and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer [5]  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.”  Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,”  she points out.  Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy.  but it’s an important balancing act as a good friend.  In Tips for Being A Great Cancer Friend, Steve Rubin,[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you.   Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment.  Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”  

At the same time, Terri Coutee advises gentle persistence:  “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,”  she says.  Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done.  In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. [7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”


[1] Nicole McClean. My Fabulous Boobies.

[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

[3] Life After Why

[4] Terri Coutee, DiepCJourney

[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

[6] Steve Rubin, The (Other) C Word

[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

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

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

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


Transcript:

Sajjad:                        

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

Diana:                         

I’m Diana Craig from Auckland, New Zealand.

Sajjad:                        

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

Diana:                         

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

Sajjad:                        

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

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

Diana:                         

Initially, I hadn’t heard of him before.

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

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

Sajjad:                        

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

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

Diana: 

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

Sajjad:                        

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

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

Diana:                         

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

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

Sajjad:

Yes, it did.

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

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

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment. 

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerble media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A  survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues.  This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion.  Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

  • Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
  • CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
  • Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
  • Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed.  Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash. 

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends.  However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes.  And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy.  Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER.  Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago.  The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer.  (Here is a list of  immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses.  It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison.  The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

Tests and Cancer

Tests and Cancer| Podcasts | Cancer Council NSW

Read full transcript Expert interviewed: Dr Lorraine Chantrill, Medical Oncologist The thing about cancer is that you need to have many tests to diagnose cancer, and see how you’re tracking during and after treatment. But there are many questions that may crop up before and after your cancer diagnosis, such as what’s the difference between all these tests?

Transcript of Episode 15: Tests and Cancer
The Thing About Cancer podcast, Cancer Council NSW

[Episode ID] 
You’re listening to Tests and Cancer, an episode of The Thing About Cancer podcast.

[Series intro]
[woman] The very essence of all cancers is a change in the way that cells divide.
[music]
[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.

[music]

Julie McCrossin: Hello, I’m Julie McCrossin and today, the thing about cancer is that there are so many tests. It’s natural to wonder what the tests are for and if you need to have them all, and then there’s waiting for the results. 

Dr Lorraine Chantrill: So you may get an answer as to whether it’s cancer or not quite quickly but the oncologist might say, “Look, we know it’s cancer but we’re just still running a few more tests to see exactly what sub-type of lung cancer it is, or exactly what sub-type of breast cancer it is.” And I would implore you to be patient while that is done because it really helps us design our treatment better. 

Julie: That’s Dr Lorraine Chantrill, a medical oncologist from the Kinghorn Cancer Centre at St. Vincent’s Hospital in Sydney. To help plan treatment, Lorraine has ordered many tests. In a moment she’s going to talk about what tests you might need, and in the second half of the episode she’ll explain how these tests help guide cancer treatment. 

Just to be clear this podcast contains general information only so we recommend that you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions. 

We’ll hear more from Lorraine in a moment, but first here’s Phil talking about the tests he had before he was diagnosed with cancer. 

Phil: Went for a check-up because I was tired, I couldn’t walk up hills anymore. The GP put me through all the tests, he said, “Look everything is perfect, you’re really healthy, you’re really, really fit. Let’s just do some blood tests. Within a few days we’ll get the results.” I say, “Sure.” He phoned me the next day and he said, “We have a problem.”

Julie: At the start of this episode, oncologist Lorraine Chantrill spoke about how tests take time and the importance of being patient. And it’s my pleasure to welcome Lorraine now to the podcast. So Lorraine, often the very first thing that happens to you if a doctor suspects you may have cancer is that you have a test. To prepare for these tests are there two or three basic questions to ask first?

Lorraine: Yes, I think so. I think you can ask: Why do I need this test? Is this test really important and urgent? And is there anything special I should know about this test? Is there any preparation that I should have to have to do this? And when will I get the results, and will I be able to talk about the results with you personally? 

Julie: Just before we hear about each of the tests and what’s involved, why are there so many different tests? 

Lorraine: There are a lot of tests. Sometimes more than others. But it’s very important for the treating oncologists to know exactly what the cancer is and where it is. That makes an enormous difference to our treatment plan.

Julie: So each test is giving you different kinds of information and different clues as to what may be happening for the patient?

Lorraine: Yes, that’s right. In some cases different types of tests need to be ordered. So, pancreas cancer is actually quite a good example because often on a regular CT scan we don’t see the tumour very well and sometimes we have to do something like an MRI scan. 

Julie: So for each kind of cancer is there a common sequence of testing that you would do?

Lorraine: More or less yes, but it’s always individualized for the person sitting in front of you. And that might change, for example, if the person who I’m seeing is an elderly person who has kidney failure, then the sort of tests I would order would be very careful because I wouldn’t want to affect their kidneys with the contrast, for example. So yes there’s a kind of a standard list of tests but it is modified for each cancer and then modified for each person. 

Julie: And then again modified depending on what you find?

Lorraine: That’s exactly right. So the findings will dictate the next step. Hopefully in most cases we’re able to do one, two or three tests and get the final answers, but you’re right, there are some situations in which we have to keep doing tests until we find the answer.

Julie: Well, now let’s talk about the most common tests that you’re likely to get, and they seem to be a mixture of blood tests and then the use of various kinds of technology. Can we just run through the most common tests someone with a cancer diagnosis is likely to experience during the journey?

Lorraine: You’re right, Julie, in that blood tests are very commonly done and most of the blood tests are really just a sort of a screening to check what the liver function is, what is the kidney function, are there any abnormalities in the way the bone marrow is producing red cells, white cells and platelets. There are some cancer-specific tests that we do. So those we call “tumour markers” and they’re very specific to certain cancers.

Julie: Could you just explain that term “tumour marker”?

Lorraine: It’s a complicated thing, and the best example I can give you is a tumour marker that is used routinely in the monitoring of bowel cancer. Most bowel cancers but importantly not every one of them, produce a tumour marker which is shortened to CEA. And that stands for carcinoembryonic antigen. That test is used to monitor people after they’ve had curative treatment for bowel cancer, but we also use it in the monitoring of people with advanced or stage 4 bowel cancer to monitor their treatment to see if their treatment is working, but it is not foolproof. We don’t actually have any markers that are foolproof.

Julie: Well we’ve talked about blood tests, just before we come to the scans, there’s also the biopsy. If you get a new diagnosis, there’s often a biopsy. What’s that?

Lorraine: A biopsy is literally obtaining a small piece of the cancer tissue in order for it to be looked at under the microscope. We get a lot of information from biopsies. Now it’s important to know that the biopsy can be of the primary site – that is, where the cancer is originating. Sometimes it’s easier to get a biopsy from a metastatic site, which is where that cancer has spread to. The pathologist looks at those biopsies under a microscope and can give us information about what type of cancer it is. And the other thing the pathologist is able to do now – and more and more so now – is look at molecular markers within that biopsy, which again helps us subdivide the cancers into increasing number of subgroups for each cancer.

Julie: Well look let’s turn now to the most common scans – the CT, the MRI and the PET scan – and get a sense of what each involves for the patient and their purpose. 

Lorraine: The commonest test to have done is probably a CT scan. CT stands for computed tomography. What it means is it’s a very careful scan where you lie on a table. And I say to people it’s a bit like being a loaf of bread and having sort of virtual slices along the loaf of bread and then what we do is turn those bread slices up and we’re able to look at your body in cross-section.

Julie: And when you say it’s virtual slices, these are slices like slices of pictures, aren’t they?

Lorraine: Yes, it’s like taking a 3D photograph of the inside of your body. Usually we do have to administer some intravenous contrast into a vein and sometimes some oral contrast, which you drink. A lot of people do find the contrast a bit unpleasant, and by that I mean the contrast can make people feel a bit hot, a little bit weird, and if that’s all that happens, that’s not dangerous, but there are a very small number of people who do have an allergy to contrast. And if you do have an allergy to contrast it’s very important that you tell your medical staff and the radiology practice.

Julie: And what’s the purpose of the contrast? What does it do?

Lorraine: So the contrast enables the radiologists to differentiate different structures. So the oral contrast is taken by mouth and coats the bowel and the stomach in contrast so that it can easily be separated from the other tissues around it where the contrast isn’t. If you have intravenous contrast, most CT scans will have that, then of course that contrast is in the blood vessels, and so again it allows the blood vessels to be differentiated on the pictures from other structures around them. 

Julie: So that’s the CT scan, let’s turn to an MRI – magnetic resonance imaging. How does that work?

Lorraine: So an MRI is a more complicated test. MRI uses a big magnet so if you’re going to have an MRI scan, the MRI team will ask you a lot of questions about previous treatments you might have had or whether you’ve been involved with any injuries that involved metal. They even may ask about shrapnel injuries, because if you have metal in the place of the body that is going to be in the MRI scanner – because the MRI is a magnet that could present some danger to you. That’s why you get those weird questions about metal implants.

Julie: So, what information does it give you and how do you go about having that test with the magnet?

Lorraine: So it gives you very, very accurate information about soft tissue and can also be done for some bone studies as well. It’s just a very, very accurate way of looking at that tissue. Generally speaking, MRI scanning is not used for the whole body. It would be true to say that the most common part of the body where an MRI is very important is the brain. The other part that’s commonly requires MRI for assessment is the spine. So it really depends on the part of the body as to whether an MRI is required or not.

Julie: And what does it involve for the patient, what does the machine look like, what do you do?

Lorraine: Yeah, so again, it’s quite a big machine. You lie on a metal table and the machine is like a really big doughnut and it spins around you. Now MRI can take a little time and it involves being in quite a small space, so some people with claustrophobia do find an MRI quite challenging. We do have some solutions for that problem. We do sometimes use short-acting sedatives to relax the patient. The staff, however, who do MRIs are very skilled at getting people to relax and they might do exercises like counting to help people relax to have the scan.

Julie: And now let’s talk about PET scans. I understand that PET – P-E-T stands for positron emission tomography. What do these scans involve?

Lorraine: A PET scan is a very special sort of scan and available now in most cancer centres, but not all – sometimes people have to travel for a PET scan. There are a few different types of PET scans but the commonest one is actually a glucose PET scan. So we inject into the person radiolabelled glucose. Cancer cells divide faster than any other cells in your body and so they take up glucose very avidly, and that shows up as being very bright on the pictures that are taken after the PET scan.

Julie: And what are PET scans used for?

Lorraine: It’s very, very useful in a number of situations and very sensitive at detecting cancer that’s spread outside of the primary site – that’s the main reason we use it. Mainly it’s before a big surgical procedure we want to do a PET scan – to make sure that before we do a big surgical procedure, for example, like removing a lung for lung cancer, we’ll want to make absolutely certain that there’s no cancer outside of that space, because if there is, then doing that really big surgery may not be the right thing to do

Julie: And are there risks involved when you’re having scans or x-rays? 

Lorraine: So in the case of PET scans, the stuff that’s injected is radioactive. But in the case of CT scans the contrast is not radioactive, where you’re receiving a radiation dose is from the x-rays that make the pictures. So yes, there is a theoretical danger to having too many x-rays but the number of x-rays you require to have a dangerous level is enormous and most cancer patients throughout the course of their treatment do not reach those dangerous levels. And the tests are getting better all the time and they’re quicker and the dose of radiation to a person received during a test is actually getting smaller.

Julie: And from the patient perspective, I’m a cancer survivor myself and I’ve had a few PET scans, I’ve noticed the person injecting the contrast is behind a lead screen. And I just think that’s worth mentioning because that is a slightly confronting thing – that the person administering it needs to be protected from the substance that’s going into your body. So can you explain why that’s necessary?

Lorraine: Yes, absolutely. So the glucose that is injected into you is radiolabelled, which means it’s radioactivity. And it’s this radioactivity which is taken up by those fast-dividing cells and which lights up on the photographic film later when the photos are taken of your body. So it does involve radioactivity, which is precisely why we’re very careful about when we order PET scans. The reason why the person who’s administering the contrast wears a lead apron is that they’re doing many of these every day of the week, and their exposure over many years might be quite high and we want to make sure that we protect staff against any radiation exposure. But for a patient who’s having a single PET scan, the danger to them is almost zero – not completely zero, but almost zero. 

Julie: And what about x-rays? Are they relevant when we’re talking about cancer?

Lorraine: So, x-rays are relevant, but there are a lot more sophisticated imaging techniques that we’ve talked about that give a bit more information. But x-rays are occasionally used, yes, particularly for bones. For example, if someone had a cancer like prostate cancer or breast cancer that might have gone to the bones and we want to check and see what’s happened to that bone and whether there is any possible fracture, then an x-ray would actually be the best test. Chest x-rays can be a good screening test for lung cancers, but generally speaking we prefer what we call a low-dose CT scan to look at lungs.

Julie: And what about ultrasounds, how are they different?

Lorraine: Ultrasound is different altogether, and the big advantage of ultrasound is that it’s non-invasive and it just involves using sound with a probe that’s run over the skin. Ultrasound is very useful at looking at ovaries, which are deep inside the abdomen. We also do use ultrasound to guide us in some of our cancer treatments and therapies. For example, some people with cancer do develop fluid in their abdominal cavity, and we will use an ultrasound to guide were we put a needle to drain that fluid. So there are a number of situations were ultrasound might be your preferred test.

Julie: What are the skills of the people who are doing all these tests for us and what are they called? And then who interprets the scans?

Lorraine: Yeah, so the people who are doing the tests are the radiographers in the radiology facilities. Radiologists are people who are skilled at looking at the scan results and interpreting them for us. 

Julie: There’s a lot of waiting, waiting to have the tests, then waiting for results, all this waiting can make people really anxious. What’s your basic advice to people who are finding this waiting difficult?

Lorraine: I would say, tell us. Call the cancer care coordinator and tell them that you’re really anxious about waiting for the scan and you’d really like some information. It may be possible to bring your appointment forward. It may even be possible for the doctor to call you if you’re happy with that. So just tell someone because we may be able to help you. 

[music]

Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to medical oncologist Lorraine Chantrill about the different tests you have when doctors are investigating if you have cancer. If you have any questions about this topic, or just want to talk to someone about your concerns, you can Cancer Council 13 11 20.

And for links to any of the resources or services we mention – or to listen to more podcasts – visit cancercouncil.com.au/podcasts and click through to this episode, Tests and Cancer.

We’ll return to Lorraine in a moment, but first we’re going to hear from Matt who talks about how he coped with the anxiety of waiting for test results. 

Matt: The experience of doing some of these tests was another point of fear. There’s a lot of waiting around and I use that to read up fact-based material on the internet. So not so much people’s personal experiences because they’re well-meaning but I’m not sure that their emotional reactions were going to be the same as mine. But certainly the fact-based material on the web I found very useful to just helping manage my fear about what was about to happen. 

[music]

Julie: So Lorraine, it often takes quite a long time before the results come through. Why is that, what’s happening? What does it take so long, because it can be a time of, well, considerable distress to the family and patient?

Lorraine: Yes I agree, and in an ideal world it really shouldn’t take that long. So, yes, some tests we should receive results very quickly. So a chest x-ray, for example, would be reported very quickly, and most CT scans are reported fairly quickly. PET scanning may take 24–48 hours to report, but the thing that probably does take time is actually biopsy reporting. So what happens first is that the pathology department takes the piece of tissue and they embed it into paraffin. So they actually fix it in formalin and then embed it in paraffin. This is a way of preserving the tissue. They then take tiny, tiny slices of that paraffin embedded tissue and they examine it under the microscope after staining it.

Julie: And what is staining?

Lorraine: So staining is using antibodies to attach to the surface of the cell and then applying a colour to those antibodies so that we can see whether the protein of interest is present or not. So as you can imagine, if you need to do several of those, it will take time. Now the number of stains that are done, depends on the cancer type and what we’re looking for exactly. And more and more so, we’re also doing some molecular tests on biopsy tissue. 

Julie: And what can those molecular tests tell us?

Lorraine: So probably one of the most common examples now is in lung cancer. So if a person has a diagnosis of adenocarcinoma of the lung, a special type of lung cancer, we will then routinely look for mutations within that tumour tissue. And if a mutation is present in a gene called the EGFR gene, that will determine treatment. And that takes a little time too. So you may get an answer on whether or not it’s cancer quite quickly, but the oncologist might say, “Look, we know it’s cancer but we’re still just running a few more tests to see exactly what sub-type of lung cancer it is, or exactly what sub-type of breast cancer it is.” And I would implore you to be patient while that is done because it really helps us design our treatment better.

Julie: Really, you have to trust that the team is working as quickly as possible to work out the best possible treatment and that they’re keen to get you into treatment as quickly as possible, but some things take time.

Lorraine: That’s right, and usually a few days is not going to make a big difference. There are some exceptions and when there are exceptions we really do hurry people along and go down to the pathology lab and put our head over the shoulder of the pathologist. So there are situations in where we really do rush through results, but most of the time that’s not necessary.

Julie: The reality is though, isn’t it, the system is so busy and you’re dealing with so many different aspects of patient care, sometimes we’re probably waiting for the doctor or clinician to be free to talk it through with us – because a little bit of information without a personalised explanation could just generate more anxiety.

Lorraine: You’re right, but if you communicate your anxiety to your treatment team, they will try and accommodate that as much as they can.

Julie: Let’s come to some practical issues around tests and scans – it goes to consent and money, I suppose. Let’s start with consent. Should you always consent when a doctor suggests a test? 

Lorraine: No, I don’t think you have to. So if you feel uncomfortable about the test that is being suggested or ordered, you need to voice your concerns, because in fact we can’t do anything to you without your consent. So if you really do not want the test, you need to let us know so that we can try to explain why we think the test is necessary, and usually after an explanation most people accept that that’s reasonable. But you may have special reasons why you don’t want to have the test and maybe we can think of other ways of investigating the problem.

Julie: So speak up if you’re concerned, is that what you’re saying?

Lorraine: Yes, yes. But for interventions, Julie, but for a biopsy, it’s very important that we get consent because something like a biopsy could have possible adverse effects or side effects, so it’s very important that you know about those before you embark on the biopsy so you’re aware that things can go wrong.

Julie: Let’s just turn to the financial side. Are there financial issues that people need to be aware of, whether they’re a public or private patient, can that influence what tests you’re offered or what tests you may ask for?

Lorraine: Yes, sometimes, not always. So most tests are required for cancer diagnosis and staging are covered by Medicare, and if you’re being treated in a public institution, generally speaking, you won’t pay anything. There are some tests, however, that are not covered by Medicare. Usually there is good reason for that actually, but occasionally if I really want a test that does not happen to be covered by Medicare for that patient, the first thing I’ll do is ask the radiology department, could you possibly do it for this patient if there’s reason that the patient can’t pay? And often they will do it for me compassionately. Sometimes there is a cost for tests that are not approved by Medicare.

Julie: Can you give us an example?

Lorraine: The best example of this is probably some MRI scans where a surgeon is trying to get some very specialised information. If you’re in a public hospital, that will be done and you won’t pay for it, but if you’re an outpatient and you’re seeing a specialised surgeon and they want a test that is more than the standard, you might be asked to pay for it. There are some PET scans that don’t fall under Medicare, and again I often manage to get those compassionately, but there are rare cases were people have to pay for them, and PET scans might be as much as $900 depending on where it’s done. So yes there are sometimes costs but if a test is ordered that you can’t pay for, please talk to the doctor who’s ordering the test, because they may have other ways of doing it.

Julie: It’s very interesting, isn’t it, that that notion of compassionate provision is still within our current system?

Lorraine: I think particularly for people with cancer, whether that’s right or wrong, but ah, I order tests and so, you know, I order hundreds of tests that are completely reimbursed in that situation. The radiologist is very nicely saying we can do one or two compassionately and that’s fine. 

Julie: You’ve already mentioned the possible side effects of tests, but are there any general messages about risks that people should be aware of?

Lorraine: Yes, so I would say in general the government and the guidelines are really encouraging us to do less tests. Partly because of radiation exposure to patients, but also partly because of cost to our community. So that’s the first thing to say, we try not to do them unnecessarily. Secondly, as I mentioned earlier, allergy to contrast is not common but can happen, and it’s very important that if you have an allergy to contrast that that be carefully documented and sometimes people even wear a medi-alert with that on it. Other than that, I think the amount of radiation exposure from each scan is very, very small and is getting smaller as our technology is getting better and scans can be done quicker with less exposure. So the risks are actually getting less, not more, with time.

Julie: And what about pacemakers?

Lorraine: That’s a good question. So the situation where pacemakers are important is in the MRI scanning. So it depends on the material that the pacemaker is made from. So most people who have a pacemaker or indeed any metal object in their body will have some sort of identification of that metal and that needs to be provided to the team if an MRI is ordered. CT scans and x-rays can be done with pacemakers in situ, but they just distort the images a little bit.

Julie: Are there any other conditions that carry risk? I’m thinking of pregnancy, in particular?

Lorraine: Yeah, so, generally speaking, any x-rays or scans should be avoided in pregnancy because of the remote chance of there being some damage to the fetus from the radiation exposure. However, again, that dose is tiny and there are some very special situations where scanning may be required in pregnancy. But, generally speaking, it’s avoided. Ultrasound is safe in pregnancy.

Julie: And diabetes? 

Lorraine: If you’re diabetic then we try to time the scans so that you’re not too much put out with your diabetic medications. So in some scans where fasting is required, we might actually ask the patient not to have their diabetes medicine that morning if they have been fasting. There is an issue with diabetes and PET scanning because PET scanning relies on glucose metabolism. So if you’re a diabetic and you’re having a PET scan, you just need to let the team know, again because you may need to modify or stop your diabetic medications.

Julie: I just want to turn to children. Are there some particular issues for children, both in terms of the nature of the tests, but also in assisting them to cope with the experience?

Lorraine: Absolutely. I think, in principal, the same process is undertaken for diagnosis of children’s cancer but you’re absolutely right, children need special care and assistance when having these tests. Sometimes, depending on the age of the child, sometimes in fact an anaesthetic is required for some of these tests, but the specialist will advise if that’s needed.

Julie: Let’s turn now to staging – the process of working out whether the cancer has spread and, if so, how far. You often hear about TNM. I understand T is for tumour, N is for nodes and M is for metastasis, but what does it all mean?

Lorraine: Staging really applies to all cancers but the staging systems are slightly different depending on the cancer that you have. But very broadly, staging is divided into the tumour stage, the lymph node stage and then the metastatic stage. So the tumour stage is essentially the measurements of the tumour in the primary site and whether it’s kind of gone through the area where it started. Nodal stage is looking at lymph nodes that are nearby the tumour and seeing whether any of those lymph nodes have cancer within them. Most but not all cancers tend to go to lymph nodes first. And then metastatic stage is distance spread. What that means is that the cancer cells have had to go through the blood system usually and landed somewhere distant. So we shorten that staging system to TNM. And we have different numbers for each T, each N and each M. So that’s the staging system and that determines what our treatment should be.

Julie: And there’ll be people listening to this who are frantically riffling through a file to look for their staging right now, and so I guess, I’m someone who’s had a stage 4 cancer, it’s important isn’t it to say you can have numbers that aren’t great and still survive?

Lorraine: Absolutely you can, that’s right. So I don’t think you should hang too much on it, it’s just a way of us labelling things. I think that’s probably the best way of thinking of it.

Julie: And are the tests and scans heading towards that staging?

Lorraine: Exactly, the purpose of the tests and scans and the biopsy is to make that stage for you.

Julie: Often when you have a test, the people hand you something. Sometimes it’s a disc, sometimes it’s a bit of paper – do you always take what you’re given to your next appointment?

Lorraine: You should do, although increasingly now these scans are available electronically to your medical practitioner, so you may not be given anything and that’s okay because presumably your doctor can access those scans on your computer. But if they do give you something like a disk or envelope, a large envelope with films in it, yes, please take them to your doctor.

Julie: I must say, as a cancer patient, what I learned was despite the use of computers and electronically messaging in many other industries, health still has a lot of disconnection and incompatibility or interoperability is not there, is the language I learnt. So I ended up having a list of all my medications with the date, all the relevant medical issues, the sort of things you’ve been describing, whether I have metal in me or other diagnoses and so on. And I took them, multiple copies of them to every appointment I went to, because you were never sure if the person had all your information or if they’d got it yet.

Lorraine: I think that’s very sensible and I would concur with what you did. I think that’s a very good idea because if they don’t need it, no harm done, but if they do need it, you’ve got it right there. And I do meet some very, very organised patients like yourself who have all their information in a folder, and they often find it very helpful to themselves as well as to the practitioners they’re seeing. If you’re having your treatment in one centre, we hope that all the information will be available to the people treating you within that centre. But especially when you go from that centre to another place, I think it’s very important to take the information with you.

Julie: We’ve already mentioned that at various points along the cancer treatment journey, as we often call it, that you may have other tests to check how everything’s going. But tests aren’t always perfect, are they? Can you tell us what we need to face up to as patients, which is that you are diligent professionals doing your best, but you’re on an investigative analysis, aren’t you?

Lorraine: Yeah, tests are not perfect, you’re absolutely right. They’re not perfect for lots of reasons. The best example I can think of, is that in cancer medicine, particularly in cancers of the gastrointestinal tract that I treat, we’re often faced with a situation where cancer has spread to the peritoneal cavity or the abdominal cavity and disease in that cavity is notoriously difficult to see on scans. It can be very hard to see and it’s not until the surgeon actually looks inside the abdominal cavity with a laparoscope or with an operation that the disease becomes visible. So that’s a good example of a test that is not perfect. And as I mentioned earlier, the tumour mark or a blood test, they’re really not perfect at all, they’re not that specific. So yes, we do have to qualify what we say about tests and scans with that knowledge that they’re not 100%.

Julie: Which brings me really to one of my closing points, which is one of the key skills as a cancer patient that I felt like I learnt was: we have to learn to live with ambiguity. We have to learn to communicate constantly with our team two-way and we have to learn to live with ambiguity because we’re on this journey of discovery and treatment and hopefully survival and recovery together. 

Lorraine: Yes, as doctors we also need to express sometimes that we just don’t know. And I think it’s very useful for doctors to communicate that to their patients to explain exactly why it is that they don’t know. Sometimes I don’t know the answer but I have a plan for how we’re going to work it out. 

Julie: And that you’ll stay with us. 

Lorraine: Yes, that’s right.

Julie: That’s really important that you know we’re in this together and I will stay with you and sort this out. 

Lorraine: Yes, exactly.

[music]

Julie: That’s it for this episode of The Thing About Cancer. Thanks to Lorraine, Phil and Matt for sharing their insights. If you’re looking for more information, you can ring Cancer Council 13 11 20 Information and Support service from anywhere in Australia. Or go to cancercouncil.com.au/podcasts. If you have any feedback on this episode, we’d love to hear from you, so leave us a review on iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app. 

If you found this episode helpful, you might want to listen to our podcast on making treatment decisions. In that episode, I talk to practising GP and Professor of Primary Healthcare at the University of Sydney Lyndal Trevena about how to decide on the best cancer treatment for you. 

Lyndal Trevena: One of the things often weighs on people’s minds at that time and later on is, did I make the right decision? And I think you can be satisfied that you have if you’ve done your best to get all the information, consult all the right people, weigh it all up, and that’s the best you can do at that time. So do that, do that when you have the opportunity, and then don’t look back.

Julie: You can find that episode Making Treatment Decisions on our website at cancercouncil.com.au/podcasts. 

The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only, and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals. 

I’m Julie McCrossin and this has been The Thing About Cancer, a podcast from Cancer Council NSW. 

[Music fades out]

Tests for Head and Neck Cancers

This was originally published by the Cancer Council here.


In this section we look at the different tests you may have to see if you have a head and neck cancer.

Learn more about these tests for head and neck cancers:

  • Physical examination
  • Nasendoscopy
  • Laryngoscopy
  • Biopsy
  • Imaging tests

Physical examination

Depending on your symptoms, the doctor will examine your mouth, throat, nose, neck, ears and/or eyes. They may use a thin wooden tongue depressor to see inside the mouth more clearly. The doctor may also insert a gloved finger into your mouth to feel areas that are difficult to see, and gently feel both sides of your neck to check your lymph nodes.

The doctor may use equipment to see some areas of the head and neck, such as the nasopharynx, tongue base and pharynx.


Nasendoscopy

In this procedure, your doctor examines the nose and throat area using a thin flexible tube with a light and camera on the end. This device is called a nasendoscope. Before the nasendoscope is inserted, a local anaesthetic is sprayed into the nostril to numb the nose and throat.

You may find that the spray tastes bitter. The doctor will gently pass the nasendoscope into one of your nostrils and down your throat to look at your nasal cavity, nasopharynx, oropharynx, hypopharynx and larynx. Images from the nasendoscope may be projected onto a screen. This test may feel uncomfortable, but should not hurt.

You will be asked to breathe lightly through your nose and mouth, and to swallow and make sounds. The doctor may also take tissue samples (biopsy). A nasendoscopy usually takes a few minutes. If you need a biopsy, the test may take longer. You will be advised to not have any hot drinks for about 30 minutes after the procedure, but you can go home straightaway.


Laryngoscopy

This procedure allows the doctor to look at your throat and voice box, and take a tissue sample (biopsy). The doctor inserts a tube with a light and camera on the end (laryngoscope) into your mouth and throat. The camera projects images onto a screen. The procedure is done under a general anaesthetic and takes 10–40 minutes. You can go home when you’ve recovered from the anaesthetic. You may have a sore throat for a couple of days.

A bronchoscope is similar to a laryngoscope, but it allows doctors to examine the airways to see if cancer is present in the lungs. The tube (bronchoscope) is inserted into the lungs via the mouth and throat. This may be done under a local or general anaesthetic.

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

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

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

What is head and neck cancer?

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

What causes head and neck cancers?

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

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

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

What are the symptoms of head and neck cancer?

Symptoms of head and neck cancer can include:

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

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

How are head and neck cancers diagnosed and staged?

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

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

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

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

How are head and neck cancers treated?

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

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

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

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

Resource: Support for People with Oral and Head and Neck Cancer

Support for People with Oral and Head and Neck Cancer (SPOHNC) has over 125 Chapters throughout the United States and continues to grow. Connecting with a local chapter is an in-valuable first step in the healing process.

SPOHNC, a not-for-profit 501 (c) (3) organization, has become a vital component of the healing process for head and neck cancer patients. It has had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. A support organization, such as SPOHNC, can also be the foundation for patient and family education and awareness.

Raising awareness of oral and head and neck cancer is an important part of SPOHNC’s mission. SPOHNC’s Chapters and additional volunteers help to raise awareness through many events, which include oral cancer screenings, educational fairs, tasting events, and move to music classes.

SPOHNC has developed a network of relationships with health care providers throughout the United States who specialize in oral, head and neck cancer. SPOHNC’s Medical Advisory Board consists of distinguished head and neck physicians treating patients at the top comprehensive cancer institutions.

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Head & Neck Cancer Treatment Overview

This resource was originally published by the Mayo Clinic here.


Overview

Head and neck cancers are a broad category of cancers that occur in the head and neck region.

Head and neck cancer treatment depends on the type, location and size of your cancer. Treatment for head and neck cancers often involves surgery, radiation therapy and chemotherapy. Treatments may be combined.

After treatment, recovery from head and neck cancers may involve working with rehabilitation specialists and other experts to cope with side effects, such as hearing loss, difficulty eating, dental problems, thyroid issues, difficulty breathing or difficulty speaking.

Types

  1. Esthesioneuroblastoma
  2. Floor of the mouth cancer
  3. Lip cancer
  4. Mouth cancer
  5. Nasal and paranasal tumors
  6. Nasopharyngeal carcinoma
  7. Pituitary tumors
  8. Salivary gland tumors
  9. Skin cancer
  10. Soft palate cancer
  11. Throat cancer
  12. Thyroid cancer
  13. Tongue cancer
  14. Tonsil cancer

Clinical trials

Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this disease.

ONS Podcast: Radiation Side Effects With Head and Neck Cancers

This podcast was originally published by The Oncology Nursing Society here.


ONS member and 2019 Congress Presenter John Hillson, RN, BSN, BA, OCN®, clinical nurse at Duke Radiation Oncology in Durham, NC, joins Chris Pirschel, ONS staff writer, to discuss managing radiation side effects for patients with head and neck cancers, helping patients navigate the complexities of radiation therapy, and supporting patients throughout the cancer journey.

Check out these resources from today’s episode:

Head & Neck Cancer Screening Guidelines

This resources was original published by Memorial Sloan Kettering Cancer Center here.


The term “head and neck cancer” encompasses a wide range of tumors that occur in several areas of the head and neck region, including the nasal passages, sinuses, mouth, throat, larynx (voice box), swallowing passages, salivary glands, and the thyroid gland. The two major known risk factors for head and neck cancer are exposure to tobacco and heavy use of alcohol. A type of cancer of the head and neck known as head and neck squamous cell carcinoma (HNSCC) is a relatively uncommon disease, with 40,000 new cases and 10,000 deaths estimated in 2008 in the United States. Twenty-five percent of HNSCCs harbor human papillomavirus (HPV), a commonly occurring virus that may play a role in the development of head and neck cancer. Non-squamous cancers of the head and neck — which include tumors of the thyroid, skin adnexa, salivary glands, sarcomas, and lymphomas — are even more uncommon.

Head and Neck Cancer Risk – High-Risk Groups

Heavy exposure to tobacco and heavy use of alcohol are well documented as major risk factors for head and neck cancer. In addition, patients cured of HNSCC have an approximately 10 percent risk of developing second primary cancers of the head and neck at five years after treatment. Individuals with a premalignant lesion in the mouth known as dysplastic oral leukoplakia have an almost 30 percent risk of oral cancer at ten years after treatment. Individuals with the following diseases and syndromes are at increased risk for head and neck cancer: Fanconi anemia, a rare, inherited disease in which the bone marrow fails to function properly; Li-Fraumeni syndrome, a rare, inherited disorder that greatly increases the risk of developing several types of cancer; and Plummer-Vinson syndrome, a disorder characterized by long-term iron deficiency anemia, which causes swallowing difficulty.

Head and Neck Cancer Screening Tests

Currently, there are no screening methods that have been proven to increase survival rates for HNSCC. A screening physical examination of the neck, oropharynx (the middle section of the throat that includes the soft palate, the base of the tongue, and the tonsils), and the mouth has been widely adopted as part of a routine dental examination. However, there is no evidence that this intervention reduces mortality from oral cancer. It is likely that in the coming decades this routine screening will allow earlier identification of oral cancer, when it is in a less advanced form, but this has yet to be proven in clinical studies.

At Memorial Sloan Kettering Cancer Center, we offer yearly free head and neck screenings in the spring to anyone in the community. These screenings provide an opportunity to educate interested patients on awareness of oral cancer and its risk factors.

There are no HNSCC screening guidelines from the American Cancer Society, the National Comprehensive Cancer Network (NCCN), or the National Cancer Institute. And, at present, there are no known tests of blood or saliva proven to be effective for detection of HNSCC.

Our Head and Neck Screening Guidelines

Our doctors advise that all individuals have a yearly physical examination of the head and neck and oropharynx (the middle section of the throat that includes the soft palate, the base of the tongue, and the tonsils) conducted by their primary care physician, as well as a yearly routine dental evaluation to include examination of the neck and inspection of the oropharynx and the mouth.

Our Screening Guidelines for High-Risk Patients

For high-risk patients cured of HNSCC, our doctors use the NCCN’s follow-up guidelines outlined below to look for both recurrence of the initial cancer and second primary cancer formation.

Physical exam

  • Year One: every one to three months
  • Year Two: every two to four months
  • Years Three to Five: every four to six months
  • Year Five and Beyond: every six to 12 months

Chest x-ray annually

If an individual has received radiation treatment of the thyroid, then a TSH thyroid function test should be performed annually.

For high-risk patients with surgically unremovable or recurrent dysplastic oral leukoplakia, our doctors recommend observation on the same schedule as above and biopsies for suspicious changes in the lesions. These patients are also sometimes eligible to be enrolled in prospective clinical trials in head and neck cancer prevention at Memorial Sloan Kettering.