Once you have been diagnosed, strongly consider getting a second opinion on your treatment plan. Skill and experience is important to ensure the best outcomes for both surgery and subsequent radiation therapy. If possible, see a head & neck surgeon at an institution that has a fellowship program in advanced training in head & neck oncologic surgery or see a head & neck surgeon who has completed a fellowship in head & neck oncologic surgery. This is your face. This can affect your ability to eat, speak articulately, smile and kiss…the things we live for as humans.
For years, newly diagnosed survivors have contacted me after finding this website. I’ve compiled my responses and advice 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.
- 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 from an ORAL PATHOLOGIST on your biopsy.
- 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’ts 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.
- Cancer Care 800-813-HOPE
- R.A. Bloch Cancer Foundation
- Cancer Support Community
- 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.
- Listen to and play music. It 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.
- Persistent sadness
- Difficulty concentrating
- Difficulty remembering
- Difficulty making decisions
- Decreased interest in sexual activity
- Weight and appetite loss
- Overwhelming sadness
- 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.
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 study published in the Journal of the Indian Medical Association (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 Foundation Patient Forum. It has 8,000 members of survivors, caregivers, healthcare providers and medical experts. Ask your questions and help others by answering theirs.
- 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
- Get a powerful blender – a Vitamix or a Nutri-Bullet. I prefer the compactness (and price) of the Nutri-bullet.
- 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.
- 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.
- I couldn’t hold my head up straight after the neck dissection. I found a MyofascialNeuromuscular 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.
- Plan something to look forward to.
- Recommended Cancer Retreat Programs:
Stowe Weekend of Hope
Smith Center for Healing and Arts
Wind River Cancer Wellness and Retreats
- 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.
- 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
- Extra soft toothbrush. My favorite is Nimbus.
- 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
- 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.
- 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.
- 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 aNimbus 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. My favorite brand is Xero Sticks.
- 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.
- Ask your dentist about using Prevident, a prescription fluoride toothpaste.