Survivor of HPV-Related Neck Cancer Shares 6 Tips for Others in Treatment
Sometimes life deals you a hand you just never expected. In Patrice Saurman’s case, this came in the form of a neck cancer.
Patrice, 67, of Camp Hill, Pennsylvania, is a registered nurse who uses both her medical expertise and her personal experience with cancer to be a supporter, patient advocate, and friend to others with the same diagnosis. She is nurse facilitator for Penn State Hershey’s Head and Neck Cancer Support Group, a local chapter of the national organization Support for People with Oral and Head and Neck Cancer (SPOHNC).
HealthCentral spoke with the head and neck cancer survivor of 10 years about her cancer journey and her tips for others going through similar diagnoses.
HealthCentral (HC): What was your first reaction to your diagnosis in 2007?
Patrice: My husband, Lee, and I were quite alarmed when we found a raised lump on the side of my neck that I hadn’t noticed the day before. I was referred to an oncology surgeon at Penn State Health.
After what would hopefully be just an incisional biopsy, we were stunned when to learn the mass was cancerous. The surgeon was certain he had gotten all of it. I came out of surgery with 32 lymph nodes removed, a modified radical neck dissection, and a large incision from behind my left ear to the midline of my neck. It was what my doctor considered an unknown primary tumor, meaning the primary source was unknown, but that he suspected it may have originated in my tonsils. I had a second surgery to have them removed as a precaution, but no cancer was found. It remains “the unknown primary.”
HC: What connection did your neck cancer have to the human papillomavirus (HPV)?
Patrice: We do know from the pathology report that the HPV was present [in the tumor]. Statistics show that HPV, a sexually transmitted disease, is thought to cause 70 percent of oropharyngeal, or throat and mouth cancers, in the United States. Over 20 million Americans carry this virus.
Gardasil 9, the HPV vaccine, is now approved by the FDA for use in males and females ages 9 through 45. It is the only vaccine that prevents over 90 percent of possible HPV-related cancers, protecting people against nine strains of the virus responsible for the majority of these cancers and diseases. Due to an alarming rise in the number of people infected, it has now reached epidemic proportions.
I'm very concerned that many parents who have never even heard of HPV or know very little about it have decided that they don’t want their children vaccinated. I don’t think they understand that this virus can remain dormant in the body for 20 years or more before striking. I cannot stress enough the importance of parents learning more, talking to their family doctor, and hopefully reconsidering. We want our children to be healthy not just for today, but to remain healthy well into adulthood. They are the future of tomorrow.
HC: What was the most challenging part of treatment for you?
Patrice: The chemotherapy and radiation: I was supposed to have three rounds of chemo with Cysplatin, but I could only tolerate two. I was also supposed to have 30 rounds of radiation therapy, but only had 25.My biggest problem, though, was what I called “mucous mouth.” Radiation destroys salivary glands, causing a lack of saliva. This results in a thick, mucousy saliva that coats the mouth and tongue and is almost impossible to get rid of for more than a few seconds. I spent hours in the bathroom trying to clear my mouth, rinsing and rinsing to get rid of these slimy secretions, only to have it return in less than a minute. This lasted for months and caused me a great deal of anxiety.
HC: What are the most important things you learned during treatment?
Patrice: Don't isolate! Many people have never heard of head and neck cancer and may back away from you because they don’t know what to say. Reach out to them! Many patients become very self-conscious and tend to withdraw because of serious side effects they may be dealing with. It’s so important to know you are not alone. It took me six months to work up the courage to attend a meeting. When I finally did, I found a group of people who knew exactly what I had gone through because they had gone through the same. Bonds are often formed with one another because we’ve all shared so much. Suddenly, I didn't feel so alone anymore. I had support, and I learned that I was a lot stronger than I thought I was. I began to heal.
HC: What are some of your best tips for self-care?
Patrice: I have six tips I hope will help someone:
- Keep a positive attitude: Surround yourself with positive people, places, and activities — whatever makes you happy. I spent a lot of time with our Silky terriers, Lexi and her daughter, Lola. They’ve been so devoted to me, right by my side the entire two months I was in bed. I always love their company.
Keep up with any hobbies and interests you may have: I love reading and writing. I’ve written a novel and am in the middle of writing another. I journal when something bothers me or when I want to preserve a memory. I enjoy making natural skin-care products. Taking a drive or going for a ride in the car always lightens my spirits.
Volunteer: Help someone in need. Make someone smile. It will help take your mind off your troubles and make you realize that you’re not the only one who struggles. In helping someone, you’re helping yourself. What Lee and I have learned is that there’s more joy in the act of giving than there is in receiving. As my caregiver and a member of the group, he’s been very supportive and involved with not just me, but with the group as well, from the very beginning
Accept when people say, "Let me know if there’s anything I can do for you”: If someone says they would like to help with “anything,” tell them specifically what your needs are. Maybe they could babysit, or run errands, or take you shopping, or prepare a meal for your family, give you a ride to an appointment, or just stop by and visit. If you just say “OK,” chances are you won’t contact or hear from them. They asked. Don’t be shy. Tell them!
Don’t worry about your hair falling out: It will grow back! In the meantime, go shopping when you’re feeling up to it. There are a lot of nice wigs and fun hats that are sure to lift your spirits. Or you can be daring and just go hair-free!
Don't isolate yourself: Find a support group and start attending, even before you start treatment. There is so much to learn. In our group, we welcome newcomers and encourage them to share and we also share our stories and experiences. Members have a wealth of information you may never learn in your doctor’s office. We often have interesting and informative speakers: a lymphedema specialist, physical therapist, dietician, social worker, speech pathologist, surgeon, audiologist, or oncology radiologist. Newcomers are often better informed, better adjusted, and more confident. I wish I had joined much sooner!
For more on the Penn State Health Milton S. Hershey Medical Center support group, please call Patrice A. Saurman, R.N., B.S.N. at (717) 737-8097 or email firstname.lastname@example.org.
[Interview has been condensed and edited.]
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