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    Head & neck/throat cancer, what online resources did you find the most helpful?

    Asked by WhatNextEmails on Tuesday, March 26, 2013

    Head & neck/throat cancer, what online resources did you find the most helpful?

    We need your help again. We're working to improve our resources page and want to know, What online resources did you find the most helpful? For example, did you google your diagnoses? What cancer sites did you find? Did you look for financial resources, help with prescriptions, help with treatment expenses? Travel expenses, or a treatment center? Give us the run down of the first 48 hrs after you were diagnosed that you spent online. What did you want to know? And did you find it?

    With this information we can develop more resources for our fellow WhatNexters to help them find the help they are looking for, as quickly as possible. Give your tips and resources you found helpful and we may use your information in our articles to help others in the future.

    2 Answers from the Community

    • BLBragg's Avatar

      The run down of the first 48 hours? You mean "after" they picked me up off the floor, correct? (Just kidding Greg) Sometimes a little humor helps :)

      When my husband was diagnosed I was frantic to find information. I know that most people say, "stay off the internet" but how could I? This was so very foreign to us. Neither my husband nor I had been sick other than a cold every now and again.

      Since Art was diagnosed with base of tongue cancer, I googled that first...not much luck other than several horror stories and many centers vying for our business. I expanded the search to head and neck cancers and came across the following:

      American Cancer Society in Atlanta had some good reading material.
      American Head & Neck Society in Los Angeles, CA
      Head and Neck Cancer Alliance in Charleston, SC
      National Center for Complementary & Alternative Medicine Bethesda, MD
      Oral Cancer Foundation Newport Beach, CA

      For the most part these sites offered descriptions of the diagnosis, symptoms and treatment. After-effects were not mentioned all that much.

      I then decided to join the Cancer Survivor's Network. I thought that here were a group of people that actually went through treatment, could empathize with our situation and explain what happened to them. And they survived! Even though each person reacts differently, I was able to form a good picture of what was to come and prepared myself. My husband and I at the time had an agreement of "selective sharing." I only told him the "good stuff" and worried about the bad myself. He had enough to worry about fighting the cancer.

      I then narrowed down my research to our specific area in N. Carolina thinking that I needed resources closer to home. That's when I found a nursing service that came to our home to administer fluids twice per week, covered by insurance, and a registered dietitian who came to our home to help with meal planning, also covered by insurance. These knowledgeable women answered many more specific questions.

      As time has gone by we have discovered SOPHNC - Support for People with Head and Neck Cancer. They have also been quite helpful. And of course as many of you know, I wrote "Destination Cancer Free" It was one way to pay it forward, donate money and provide a resource to others in our same situation. It is the book I wish I had when Arthur was diagnosed.

      I hope this was helpful :)

      over 3 years ago
    • Richardc's Avatar

      Man! I wish I could remember. After the shock wore off and having a very frank discussion with my surgeon, I searched the ones I could think of. I searched for scc of the lymph nodes/neck.not a lot of luck. Then ACS, NCI md Anderson Sloan Kettering, mayo clinic. It was hard to find much other than depressing statistics. I found more hope and information once I found someone who went through what I had ahead of me. What this site provides is great. It's just a matter of getting the word out.

      over 3 years ago

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