For years, newly diagnosed survivors who google ‘oral cancer’ have contacted me. I’ve compiled the advice I’ve given out in the list below. Many of the suggestions are for survivors of any type of cancer because chemotherapy often affects the oral cavity. If you want to add your experience to the list, I’d welcome your comments.
Advice from One Survivor to Another
- You are a ‘survivor’ from the moment you are diagnosed.
- Stay away from statistics—they don’t tell you your story.
- Get a second opinion on your treatment options from a major medical center.
- Get a second opinion on your pathology slides: Dr. Margaret Brandwein-Gensler, Head of Surgical Pathology at University of Alabama at Birmingham, developed and validated a new grading system for oral cancers identifying whether a tumor is a high-risk or low-risk of recurrence, which would therefore predict a more personalized and specific treatment plan.
- Bring someone along on doctor visits.
- Prepare for appointments by writing down questions. An educated patient is an empowered patient.
What kind of education and experience with head and neck cancer does my surgeon and radiation oncologist have?
Will I have a multidisciplinary team supporting my treatment?
What are the risks and benefits of treatment?
Have there been any recent advances in the treatment of head and neck cancer?
Have all my treatment options been thoroughly explained?
What are the do’s and don’t of treatment?
What are the side effects of treatment?
How can I improve my quality of life?
Is there a financial counselor?
How can my caregiver best manage my care?
Do I need help with coordinating my care when I return home?
Is my cancer HPV-positive?
In addition to my doctor, whom can I ask if I have questions?
Who should I call in case of an emergency?
- If your circumstances make communication challenging, a patient navigator can help you establish and maintain an open dialogue with your health care team.
Possible sources for funding include:
- Cancer Care 800-813-HOPE
- LIVESTRONG 855-220-7777
- R.A. Bloch Cancer Foundation 800-433-0464
- Cancer Support Community 202-659-9709
- Cancer Financial Assistance Coalition www.CancerFAC.org
Emergency Medicaid may cover hospital costs. Contact an oncology social worker or patient navigator at a major cancer center (MD Anderson or Sloan Kettering) for more information.
- Gratitude: Our first reaction is to curse the cancer. Gratitude can transform the anger into a healing journey. Note three things every day for which you are grateful, no matter how small they may be. Articulating gratitude develops strong meaningful relationships with supporters too.
- Prayer: Asking for things or bargaining with God in a prayer can be frustrating. Try making your prayers about gratitude: “Thank you for doing this to me and not to my children.” “Thank you for doctors that can give me hope.” “Thank you for the many friends and family who care.”
- Give Back: Help to put your life in perspective by volunteering, helping another out, or just going out of your way to be nice. No matter how tough life is for you, it feels good to do something for another beyond taking care of yourself. You have a greater purpose!
- Meditate: Visualize the cancer getting starved out, moving down and out.
- Humor: Even feeling like you are in a deep dark hole, you can still laugh at a joke. Laughing is medicine even if it’s only for a moment. Watch comedies, tell jokes, reminisce about the good ‘ol days.
Start a new hobby or activity that brings you a modicum of joy!
- Keep a journal.
- Participate in cancer education programs.
- Visit the Oral Cancer Foundation website, OralCancer.org. Participate in the patient forum. This site is monitored by trained professionals or experts.
- Seek emotional support from clergy, social workers, patient navigator, oncology nurse.
- Concentrate on the things you CAN control: taking good care of your body, eating healthfully, exercise…
- Discuss with family unresolved feelings.
Normal Reactions to a Cancer Diagnosis
Difficulty making decisions
Decreased interest in sexual activity
Weight and appetite loss
Feelings that Require Professional Attention
Prepare for Treatment
- Schedule a pre-radiation oral health evaluation (A dentist with expertise in oral medicine is recommended).
- Set up a system to deal with insurance.
- Create a file for all printed materials related to your treatment so you can easily look up information.
- Address practical end-of-life issues.
- Keep track of all expenditures, especially those not covered by insurance. The IRS offers a free publication regarding tax exemptions for cancer treatment expenses.
- Request a copy of your dental records.
- Bulk up, especially if you are lean. You will need to strengthen yourself to endure the side effects of radiation to the oral cavity.
- If there are children in the family, inform the school about the diagnosis, tell the child what’s going on, and use ‘Mr. C Plays Hide & Seek’ as a resource for the child and their friends.
With surgery, every day you get better, and when you are getting better, there is hope. Radiation is different. Everyday, you think it can’t get any worse, and it does. Prepare for the biggest challenge of your life. Know that many have endured the radiation experience. You have more strength and courage than you know, and you never know how much of it you have until you go through treatment!
Try this to minimize the havoc on your mouth, particularly Mucositis:
- Oral Hygiene -don’t slack off! The healthier your mouth, the healthier you whole body! Use a VERY soft toothbrush so you don’t irritate or nick your tender gums. My absolute favorite brush (5 for $12 online) is the Nimbus. The ‘soft’ toothbrushes sold retail just don’t compare.
- Use an oral irrigator on a gentle setting. This Waterpik is my favorite because it is compact, easy to put away, and has a European attachment for when you go on that cruise or vacation to celebrate your recovery!
- Glutamine powder to reduce mucositis and promote healing of mouth sores. A common recommendation is 10 grams mixed in water three times a day. For best, results swish mixture in your mouth and gargle then swallow. Read about it at Caring4Cancer.
- Try honey! Honey may reduce the risk of painful mouth sores. According to this article from Bastyr Center for Natural Health (one of the top naturopathic school in the US), and recommended by my Registered Dietitian specializing in cancer patients, the regimen is 4 teaspoons of honey 15 minutes before radiation therapy and then 15 minutes after radiation. and again six hours following the treatment. Please note if you are a diabetic, this may have an impact on your blood sugar; please check with your doctor.
- A product that may help with mucositis: Gelclair
- Hopefully, you regularly visit a dental practice that is knowledgable about the maintenance of a radiated mouth.
Do an activity that brings you joy!
- Don’t postpone an opportunity to have fun. Get out that hula hoop.
- Giggle. Laughter increases blood flow and releases endorphins, a natural mood enhancer.
- Don’t forget undergoing treatment is a ‘life sentence’ and not a death sentence.
- Help yourself by helping others: Participate in the Oral Cancer Foundations Patient Forum. It has 8,000 members of survivors, caregivers, healthcare providers and medical experts. Ask your questions and help others by answering theirs.
Favorite Foods When Going Through Head/Neck Radiation
Radiation to the head/neck is devastating. It steals everything you live for: Eating, talking, loving. But, it’s temporary. During treatments, I brought in a comfy blanket to stay warm in the cold room. I played my favorite relaxation music and practiced deep breathing and meditation techniques to get through the 20 minutes treatment without taking a break. More important than anything is to keep up your weight and nutrition for the strength to get through it!
- Whipped sweet potato -My Mom put it in a champagne glass and decorated with mint leaves from my garden. Now that’s love!
- Scrambled Eggs
- Soup (lentils, butternut squash)
- Creamed or pureed spinach (light on creme causes phlegm)
- Cream of Wheat
Got a Feeding Tube?
Try not to rely on the feeding tube or you may loose the ability to swallow normally after treatment. Keep eating and drinking by mouth.
- Get a powerful blender -I recommend a Vitamix. You can puree ANYTHING!
- For a supplement, try Orgain. At least you can recognize all the ingredients (unlike Boost or Ensure) and it’s organic made with whole foods.
- Get some ‘Tube Talk’:The Oley Foundation offers information, support, and programs for people requiring tube feeding. Get answers to your questions from experts, learn about the latest medical advances, read consumers personal experiences, and how to stay free of infection.
Listen to or Play Music
Music has the power to instantly comfort, energize and inspire.
Go outside every day. Fresh air induces a feeling of well-being. The root of ‘recreation’ is ‘re-create.’ Recreate yourself. Discover your new normal and learn to like it.
Organize a Support Network
Identify your needs. Ask your family and friends who can do what and when. My friend Carol xeroxed a calendar for the two months I’d be most incapacitated. When people called and asked, ‘What can I do?, I said, ‘Call Carol.’ Some people liked to drive, others liked to cook, and some, believe it or not, liked to fold laundry and clean up!
Dry Mouth Remedy
- Sleep with a spill-proof water bottle. I use a flip top Camelbak. Without much disturbance to my sleep, I can moisten my mouth throughout the night without lifting my head and using just one hand.
- Try some CoQ10, also known as Ubiquinol: it can make a difference. http://www.ncbi.nlm.nih.gov/pubmed/21406193#. Take with yogurt or food with fat content.
- Avoid commercial mouthwashes, especially those with alcohol.
Recovery from Treatment
‘Patient, be patient.’ There are differing recovery times for different people.
- I couldn’t hold my head up straight after the neck dissection. I found a Myofascial Neuromuscular Therapist who released the scar adhesions. She also did an intra oral massage which I continue doing to this day to keep the scar tissue around my tongue and gums supple and stimulated.
- Seek professional assistance with physical recovery: physical therapy, diet, exercise.
- Seek professional help with emotional recovery: support groups, online chats, clergy, social worker.
- Don’t be afraid to consider a Doctor of Naturopathy to enhance physical and mental well-being.
- Ask for what you need from family and friends.
- Encourage your surgeon and radiation oncologist to partner with your dentist for your continued oral health. There are management issues pertinent to the dental maintenance of oral cancer patients.
- Cancer Retreat Program in California recommended by a fellow survivor: http://www.commonweal.org/programs/cancer-help.html
- Plan something to look forward to.
Free housecleaning for women is available once a month for 4 months while undergoing treatment. http://www.cleaningforareason.org available in most zip codes.
How To Be a Friend to a Survivor of Oral Cancer
Oral Cancer survivors are NOT contagious. There is no need to be afraid.
Oral cancer is NOT a death sentence.
The Dos and Don’ts
- Don’t stop including him/her in activities you would normally do together. Let them tell you they are not up to it that day.
- Don’t postpone an opportunity to have fun!
- Don’t use well-meaning but trite phrases such as, “Everything will work out” and “God only gives you what you can handle.”
- Don’t say, “I know how you feel.”
- Don’t make comparisons such as, “My aunt had a cancer and….”
- Don’t trivialize the experience with such phrases as, “It’s just hair; it will grow back.”
- Do maintain regular contact; send a card/email often or call.
- Do listen with an open heart; maintain eye contact.
- Do say, “I’m sorry you have to go through this. I am here for you.”
- Do ask yes/no questions so you don’t set him/her up for rejection if you can’t do what they ask. For example, I’m going to the market, can I pick you up anything?” I’m taking the children to the park, can I take yours?” I’m free on Monday’s, can I do your errands?”
- Do say, “I don’t know what to say,” than saying nothing at all.
- Do help him/her believe they will make it through. Be positive and encouraging.
- Do ask the survivor to give you direction about what you can do to help
- Do make a plan for the future, giving your friend something to look forward to
- Do collect an arsenal of jokes for humor to balance the blues.
Empower the patient. When in a hospital, a patient is on a nurse’s or doctor’s schedule. When you visit, take the opportunity to do what the patient wants at the moment of your visit. They may be tired and not want to talk. Instead of feeling uncomfortable about what to say or do, try saying this: “I want to bring you a moment of joy, what is it you want to do at this moment?” Then, bring a bag of activities you think the patient would like.
- Read to the patient: Jokes, sermon of the week, a bestselling book, poetry
- Play music: A recent band you heard, a Broadway musical, and tell them about it
- Play a game: Chess, crossword puzzle, cards
- Pamper: Bring massage oil, tweezer…my cousin shaved my legs for me!
- Music and a means to play it
- Audio books, uplifting or humorous. He/She can listen during long and lonely nights
- Petroleum-free chapstick. (Avoid Vaseline; the oil base can promote infection)
- Cushy socks
- Soft scarf. After a neck dissection, necks are forever cold!
- Certificate for a massage or beauty service
- Donation in his/her honor
- Guest book for recording all the people who visited at the hospital
- ‘Mr. C Plays Hide & Seek’ is a great book for the children and grandchildren of the patient
Cancer is an Opportunity
In the beginning, the newly diagnosed can be angry and may have a hard time seeing beyond it. It’s human nature to lament your loses and a true human skill to recognize your gifts. Blessings are a part of each and every day, if only we could step back and notice! Cancer is an opportunity to:
- Deepen relationships with true friends.
- Leave a legacy of courage and gratitude.
- Recognize strength and courage in yourself, your family and friends.
- Learn and grow.
- Build leadership and coping skills.
Notes for the Caregiver
- A healthy caregiver will be better able to take care of a survivor. “Secure your own oxygen mask first.”
- Sleep and eat well, exercise and take time for yourself.
- Communication and self-care are critical for navigating the emotional roller coaster of caregiving.
- Spend time together where the focus isn’t cancer.
- Take cues from the patient about how much or little you can be doing to help.
- Allow the survivor to to maintain as much independence as her/she is able.
- Recognize all you do and that there is a need for downtime.
- Ask for and accept help. You can’t do it all alone.
- Seek support from clergy, oncology nurses, support groups
- Create a healthy balance between ‘doing’ and ‘being’. Be present: Maintain an emotional outlet for stress while managing the practical tasks.
- Find humor. Laughter releases stress.
Moving Beyond Recovery into The Rest of Your Life
First and foremost: Keep your oral cavity in an optimal state:
- Floss and then brush with a VERY soft toothbrush. Include your gums and tongue. I use a Nimbus brush.
- Stimulate with a rubber tipped utensil at base of tooth near gums
- Irrigate with an oral irrigator. This Waterpik is my favorite because it is small, just as powerful as the larger model, and works in a cruise ship bathroom with limited voltage requirements! On a cruise, I no longer have to irrigate my teeth at the outlet by the desk.
- Proxabrush between molars, especially if you have dental implants.
- Tooth pick. Yes, use a tooth pick! Tooth-picking does something floss and brushing don’t do.
- If you had a large dose of radiation, be aware of future tests offered to you that emit large doses of radiation: PET, CAT/CT.
- If you need an extraction or other invasive dental work, consider Hyperbaric Oxygen Therapy (HBO). It’s a two hour treatment where you breath pure oxygen which will improve vascularity in your radiated areas, making healing easier and faster.
- Keep a headlamp in your bathroom, so you have both hands to pull your tongue to the side and probe around to examine your mouth for changes.
Something to Think About
Every 5 years or so it is recommended to have a colonoscopy. Why is it not recommend to have a scope from up above as well?
Tongue Photos Before and After Surgery for Early Stage Oral Cancer
If you have scrolled this far down the page, you must want to know as much as possible. The tongue heals more quickly than any other part of the body. Rest assured the surgery for early stage oral cancer isn’t so terrible.