The Head and Neck Cancer Alliance brings to you its updated and refreshed quarterly e-newsletter.
HNCA News Bulletin
The Hidden Costs of Cancer Treatment
By Holly Boykin MA CHE, HNCA Executive Director
Managing a cancer diagnosis and its treatments can be all-consuming. The patient’s focus needs to be on managing stress, eating healthfully, getting proper rest and maintaining a positive outlook. All too often, the confusion and stress from dealing with health care coverage, scheduling medical appointments, enduring treatments, working to maintain family, and in many cases, work demands can be very difficult and distracting for the cancer patient.
One of the unforeseen, and many times, stressful challenges head and neck cancer patients tell us are the multitude of “hidden” costs – even if the patient has a comprehensive health plan.
Some costs will be presented upfront when the patient’s treatment plan is outlined with the specified insurance coverage. For example, the cost of chemotherapy or a particular medication may be fully covered by insurance. However, not all insurance policies cover the multitude of procedures or require the patient to meet a deductible and/or do not pay for all the necessary costs during the cancer journey.
To assist in navigating and preparing the cancer patient and his/her caregiver(s) in what to anticipate, I have outlined some of the hidden costs of head and neck cancer treatment.
Transportation and Travel
These are the costs of daily living that increase due to a long-term illness and its treatment. For example, expenses for gasoline and possible parking fees may increase, especially if the patient needs to travel additional miles to a treatment facility multiple times a week. With the Head and Neck Cancer Alliance, we offer a limited supply of $50 Gas Cards to help with travel expense that is funded by three gracious private donors. To learn more, check out the Gas Card Program page.
Expenses for tolls, taxis, bus or train fares, or airplane fares to medical appointments or treatment center may be required. Depending on where a patient decides to receive treatment, he/she may also need to pay for a hotel or other lodging.
Cancer treatments can be very demanding on one’s regular schedule and often exhaust the cancer patient both emotionally and physically. A parent, who is facing cancer treatment, may need to schedule childcare for the days he/she undergoes chemotherapy treatment.
Loss of Income
At the same time, due to the physical demands of treatments, doctor appointments, a cancer patient may need to scale back on work demands, which depending upon the employer’s sick/leave policy, could result in reduced income.
Doctor Appointment Co-Pays
The patient’s insurance provider may require a co-payment fee, or co-pay, for each doctor’s visit and treatment. The amount of the co-pay is determined by the insurance company, not the doctor or doctor’s office. The cancer patients may be responsible for a co-pay for each laboratory test, such as a blood or urine test, administered as part of your appointment. These co-pays for appointments, tests and other medical services can add up quickly. Budgeting and anticipating the costs of co-pays will be beneficial.
This includes payments for the medical care a patient receives during his/her cancer treatment, such as each radiation therapy and/or chemotherapy session. If the cancer patient participates in a clinical trial, there may be other cost-related factors to consider. Because cancer treatments can take anywhere from a few days to a few months or even years, a patient may need to map out these costs, especially if the treatment plan is more long-term, i.e., six months to a year. Depending on the patient’s insurance coverage, certain treatments may or may not be covered or may have a monetary limit on the insurance policy.
Be sure to work with your doctor, nurse, or social worker to assist with this.
Payments for specific prescriptions for the cancer patient, such as a drug to help manage side effects, may not be fully and/or partially covered under the patient’s insurance plan. It will be beneficial to the cancer patient to understand this early on in the treatment process and work with his/her oncologist on prescription coverage.
Caregiving, at Home Care, and Long-Term Care
Some head and neck cancer patients require extra care. Examples include: hiring someone to fix meals or drive the patient to medical appointments. In some cases, there may be costs for extended nursing care at a specialized facility or the assistance of a home health aide.
Employment, Legal, and Financial Issues
Professional guidance may be needed to assist a cancer patient in employment, legal, or financial issues related to a cancer diagnosis. It may involve the following:
• Coping with a loss of wages by the patient or caregiver
• Learning about employment rights under the law
• Figuring out medical expenses to prepare income taxes
• Writing a will
Our Big Reveal:
A Fresh Look and Website Experience
HNCA is pleased to announce the launch of our updated website. After months of hard work and dedication, we are delighted to officially present a fresh and more user-friendly website experience, www.headandneck.org.
Our goal with the website upgrades is to provide our visitors an easier way to learn about HNCA and our mission to save lives through prevention, early detection and research of head and neck cancer. The updates to our website allow our visitors to easily browse information, based on their own choice, regarding head and neck cancer.
Amongst the new features, the site contains integrated social media buttons for Facebook, Twitter, and YouTube to foster improved communications. HNCA will be constantly updating our content with helpful information, articles, blogs, newsletters, and announcements.
We hope you find our website, with its fresh look and easy-to-access information, beneficial.
Our next upgrade will be to the Oral, Head and Neck Cancer Awareness (OHANCA®) Program registration process, and we look to have this available in mid-November.
Please be sure to log-on today, www.headandneck.org.
A New Helpful Resource:
Why Nutrition Matters for Those Battling Head and Neck Cancer
Many people living with head and neck cancer face unique challenges, and may experience nutritional difficulties during the course of their cancer treatment. Balancing your diet can be a challenge at the best of times, but when going through a cancer journey it is even more important. The right balance of proteins and calories can help your body stay strong and healthy — before, during, and after cancer treatment.
Yet, despite all we know about the connection between cancer and nutrition, you may be struggling with how to best manage your diet. Like many people with head and neck cancer, you may be experiencing gastrointestinal issues, taste changes or lack of taste, painful chewing and swallowing, dry mouth, nausea and disinterest in food and eating.
Now, there’s a helpful nutrition guide available online which was developed by leaders in the head and neck cancer community as part of the new awareness campaign –Your Cancer Game Plan. This resource is aimed at providing practical solutions and guidance on how people impacted by head and neck cancer can adapt recipes to manage side effects, increase caloric intake, create nutritious meals and plan a meal on a budget.
The nutrition guide is one of the many resources developed as part of Your Cancer Game Plan, a collaboration between Merck, the Head and Neck Cancer Alliance (HNCA) and Support for People with Oral and Head and Neck Cancer (SPOHNC), and Savor Health, a service dedicated to supporting the nutritional needs of people living with cancer.
As part of the campaign, head and neck cancer survivor and Pro Football Hall of Famer Jim Kelly is sharing his personal experience, including how he modified his diet throughout his journey.
“Playing football and living in Buffalo, chicken wings and pizza were pretty much staples in my diet. But, fighting cancer showed me how you eat and the things that you put in your body are so important. If you want to continue to feel healthy, you really do need to pay attention to your nutrition.”
We encourage you to visit the campaign’s online hub www.YourCancerGamePlan.com to download and share the nutrition guide and to learn more about the program. Or join the conversation on Twitter using #CancerGamePlan
Recipe Card 02:
Lisa Reed's Asparagus Soup
- 1 bunch of asparagus
- 3 cups vegetable stock
- 4 tbsp butter
- 1 onion, chopped
- 3 tbsp all-purpose flour
- ¼ tsp ground coriander
- 1 tbsp lemon juice
- 2 cups milk
- 6 tbsp half and half
- Salt and pepper
- Wash and trim the asparagus reserving woody stems. Cut the tips in short pieces. Skip this step if the asparagus is fine.
- Add stems to the vegetable stock and boil for 20 minutes. Strain stock and discard stems.
- Add tips to minimal boiling salted water. Cook 5-10 minutes. Drain and set tips aside.
- Add butter to saucepan and sauté onion on low heat until soft. Stir in the flour and cook for 1 minute. Gradually whisk in reserved stock and bring to a boil. Cook for 2-3 minutes until thickened.
- Stir in cooked asparagus, lemon juice, coriander and salt and pepper to taste.
- Simmer for 10 minutes.
- Remove the saucepan from heat and cool slightly.
- Transfer to a food processor or blender, in batches if necessary, and puree.
- Return soup to the pan and add the milk. Simmer for 10 minutes.
- Add the half and half and heat through.
A dish created for head and neck cancer patients by Lisa Reed. HNCA appreciates Reed, an oral cancer survivor, sharing her recipes with so many others through the HNCA quarterly e-newsletter.
A New Normal
My name is Jason Mendelsohn, and I am 47 years old. I have been happily married for 20 years, and we have three terrific kids; a son and daughter twins, 16, and a 10-year-old son. When I was 44, and in the best shape of my life, I put my hand on my neck to ponder a question while taking a financial exam and felt a bump. After passing the test, I spoke to my father, who is a physician, and we called my otolaryngologist (ENT) concerned about the bump. My ENT, knowing that I didn’t smoke and that I drink only socially, asked me to come see him over the next few weeks. I saw him three days later, as I am a guy that goes to the doctor. He put me on 10 days of antibiotics and steroids, while also having me schedule a needle biopsy and CT scan, in the slight chance the bump didn’t go away. Two days later I left for the Florida Keys on vacation and then flew from there to Washington, D.C. for an industry conference. I felt great and enjoyed both trips.
I returned to Orlando from Washington, D.C. on a Wednesday, had a needle biopsy on Thursday and a CT scan the following day. Three days later, I was diagnosed with stage four HPV-related tonsil cancer. I was obviously in shock and immediately after speaking with my wife and father, contacted my two life insurance agents to make certain that my life insurance policies were on automatic draft. Over the next month, I had a radical tonsillectomy, neck dissection – removing 42 lymph nodes and began seven weeks of chemotherapy, radiation and a feeding tube.
Towards the end of my treatment, I had third degree burns in my throat due to the cumulative side effects of radiation, continued to feel nauseous from chemo, and spent approximately 18 hours a day in bed. As I couldn’t swallow my own saliva, I used my feeding tube to remain hydrated and nourished, consuming approximately seven Ensures a day and two Gatorades daily. My weight dropped from 188 to 172 in a few months. Sleeping was extremely difficult, because as I went to bed fully hydrated, I would wake up within a few hours fully dehydrated as the side effects from radiation were sucking the fluid from the inside out. This was the first time in my life that I had been dehydrated, without sweating, throwing up or having diarrhea. I would take my blood pressure/pulse 20 times a day to understand if I was becoming dehydrated, as my heart would beat much more quickly. Because my saliva was so thick from radiation, I would gag and choke close to 20 times daily, if not more. Life was unpleasant.
Outside of the physical challenges, there was an emotional toll as well. It was a horrible feeling to need my wife to shield my children from me, but I didn’t want them to worry about me possibly passing away. I recorded personal messages to my kids in the event of my passing, Messages such as this one, “One day, you’re going to get married, and I won’t be there.” I tried to impart years of fatherly wisdom in a matter of minutes because I didn’t think I had much time left. I have since deleted those videos, as they were too sad to watch.
On August 11, 2014, I had my last treatment and rang the bell, demonstrating my treatment was finished. While I was elated the treatments were over and I had survived, I had no idea that the month to follow would be my most difficult. As I mentioned earlier, the side effects from radiation were cumulative, and the next 30 days were brutal, with all of the side effects I described above.
My story does however have an incredibly happy ending. Today, I am cancer free, and working diligently to serve as a positive role model to other oral cancer patients, survivors and families watching their loved one’s struggle through the journey. I feel incredibly fortunate that I have been given the gift of life, and that I can use my experience to help others.
I continue to have quarterly checkups with either my ENT, oncologist and/or radiation oncologist as well annual scans, to ensure my cancer hasn’t returned.
My life is back to my “new normal” where I can spend time with my wife and kids, work full time and do my best to help others by serving as an ambassador for education regarding oral cancer.
You can learn more about my cancer story by visiting SupermanHPV.com. This website and blog enables others diagnosed with HPV-related oral cancer, their families and fellow survivors to obtain information, ask questions, and hopefully are encouraged by my story to embrace their new normal.
I also serve on the Board of the Florida Hospital Foundation’s Cancer Institute, and I am co-chairing the patient education committee for the Head and Neck Cancer Alliance.
Ultimately, my goal is to share my cancer story to positively educate and support other families impacted by HPV-related oral cancer.
10 Reasons to Join HNCA’s Inspire Community Today
- Get support for your head and neck cancer concerns.
- Join multiple Inspire communities to connect with more people.
- Receive regular updates about head and neck cancer topics.
- Connect with others who are dealing with head and neck cancer.
- Get real life answers from other who are experiencing head and neck cancer firsthand.
- Network with individuals that possibly live in your area for face-to-face support.
- Seek comfort at any hour and know you are not alone in your struggles.
- Discover opportunities to participate in clinical trials and other research.
- Control what you share with privacy settings.
Get Involved and Support Our Efforts
YOU have the power to help fund research, raise awareness and advocate for access to care.
Interested in contributing your time or supporting HNCA? We offer numerous opportunities to get involved:
- Organize an event in your community;
- Become a Corporate Partner of events and/or patient-focused or clinician education programs;
- DONATE – your unrestricted gift is key to supporting our mission and the most critical programs – To DONATE online click here.
- Clinicians – partner with our organization and host a screening in your community.
For more information on the Head and Neck Cancer Alliance, click here.
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