Lewis’ Story: Throat Cancer Changed His World

Posted on by DCPC

Lewis and his dog
Lewis and his dog

Lewis was a busy man. He and his wife, Amy, were running an aerobic exercise group in their community and also volunteering throughout the north Florida area. On a hot and dry day in June 2011, when the air was filled with smoke from nearby wildfires, Lewis came home from tennis coughing and clearing his throat. He also had sores in his mouth, so he decided to go to his doctor.

“The doctor looked at my tonsil and told me, ‘That’s either the worst case of tonsillitis I’ve ever seen in an adult…or it’s something else,’” Lewis says. The doctor recommended more testing. The next day, after the tests, Lewis was told that it was a cancerous tumor.

“When you hear the word ‘cancer,’ your world changes in an instant,” says Lewis.

More testing showed that it was an advanced stage of cancer—stage 4—and to have surgery on it would require breaking his jaw bone and taking out a lot of tissue, permanently changing his appearance and ability to swallow and eat. Oncologists told him that there was just as good a chance that the tumor would shrink with radiation and chemotherapy as it would with surgery. Lewis had seven chemotherapy treatments and 35 radiation treatments over the course of the next seven weeks. By the end of treatment, he could no longer swallow and had to use a feeding tube. But the tumor had shrunk to the point that doctors could no longer detect cancer.

Out of a sense of gratitude for all the help they got, Lewis and Amy decided to start a support group for people with head and neck cancers. They contacted a national organization and got the materials to start a chapter where they live. Lewis and Amy handed out flyers to local doctors’ offices and hospitals. At the first meeting, six people showed up—including some they already knew but had no idea were dealing with head and neck cancer. Now, meeting attendance ranges from 25 to 45 people.

Then, in December of 2015, Lewis found a sore on his tongue that wouldn’t go away, even with steroid treatment. His oncologist did a biopsy, and found another tumor. He was scheduled for surgery right away, because he was told that he was not a good candidate for more radiation, as he had very high doses during the last round four years ago. Additional oncologists who reviewed his case thought he might lose his tongue and part of his jaw. But a biopsy after surgery showed that there were no cancer cells remaining on his tongue.

“I still have a high risk of the cancer coming back, but I’m still going to live my life,” Lewis says.

He recommends that people who are diagnosed with a head or neck cancer should listen to their doctors very closely—and carry a notebook to write down details about treatment. He and Amy also say that support groups help both the person diagnosed and the caregiver.

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29 comments on “Lewis’ Story: Throat Cancer Changed His World”

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    Well I stopped all alcohol and tobacco use in 1976, so I though that I was safe. I started having bad head aches, than my neck and throat started to hurt and than it was my right jaw and one tooth all over about 3-4 months. The VA sent me to a neurologist, after a 4 day stay in the hospital for pain, after seeing him, I was referred to a ENT in the community. It took the doctor ther 2 minutes to give me a primary dignosis of aggressive throat cancer, that appeared to have already entered the bone. He scheduled me for a biopsy next week. No complete diagnosis yet, but I hope soon.

    Well I stopped all alcohol and tobacco use in 1976, so I though that I was safe. I started having bad head aches, than my neck and throat started to hurt and than it was my right jaw and one tooth all over about 3-4 months. The VA sent me to a neurologist, after a 4 day stay in the hospital for pain, after seeing him, I was referred to a ENT in the community. It took the doctor ther 2 minutes to give me a primary dignosis of aggressive throat cancer, that appeared to have already entered the bone. He scheduled me for a biopsy next week. No complete diagnosis yet, but I hope soon.

    My name is Kevin, I started having ear aches. After seeing my Dr and being referred to ENT at the VA hospital, I was diagnosed with Ananoid Cystic Carcinoma in the tongue. A rare form of cancer that effects about 1200 people a year. The standard treatment is removal of the cancer surgically and radiation treatment. I went in for the initial operation and after anesthesia during the insertion of the feeding tube I Suffered a rare heart condition called LQTS, where your heart stops receiving signals to contract. For 25 minutes I received CPR and was hit with the shock pads 5 times. Moments before the Dr was about to open my chest and manually pump my heart, my heart beat returned. The surgery was postponed until a pacemaker/defibulator could be installed three weeks later. A short time thereafter I went back into the surgery room again to get the initial operation performed which was a success. This involved breaking my jaw removing the cancer and grafting a piece of skin from my arm to my tongue where the cancer was at. The cancer had been removed successfully according to my scans. After healing up I received 33 radiation treatments to my tongue area and where my spine meets my brain. I suffer some side affects from the radiation like lack of taste and over active salivary glands but I am alive. I was asked if I saw anything when I was gone as I was being transported to ICU. Initially, I said no because I never witnessed a light or saw passed loved ones and I assumed that is what I was being asked, but what I did have was a brief vision of a slanted horizon with outlined figures piled on top of one another below the horizon and pitch black above. It lasted maybe two seconds. Take it for what it is, that is what I saw. It’s been an interesting year of recovery and treatment to say the least. Life goes on and I’m content with having tomorrow, Lord willing. My Dr’s and nurses, assistants and family have all been there for me. I am thankful to have them. The night before the surgery after rushing to complete my tasks on my rural homestead I carved a small wooden cross out of scrap 2×4 and taped it to my hand during my operation. I carry it with me to this day. I try to be a better person and never leave a loved one on a bad note.

    Mr. Lewis, Thank you for your amazing spirit of resilience and love that despite all you have been through you are still giving back to others. What an incredible person you are.

    I’m a mother of a 60 year old daughter who has been told she has cancer in her sinuses it is inoperable and she has been taking Chemo for 6 weeks the last MRI come back the the tumor had shrunk but they wanted to do radiation 5 days a week for 7 weeks she was fine on the Chemo but this radiation is killing her she has had 7 rounds and she has sores in her mouth and throat she can’t eat so she is down to 92 pounds . I’m just wanting to know should she do this much radiation or try to just live what time she has not being this sick Please someone help me and her Thank You Brenda F

    Hi Brenda
    I am 57 year man I got cancer on my tongue and then spread to my neck
    I went through 7 weeks of chemotherapy and 8 weeks of radiation 43 radiation treatments
    It was the most painful thing I have ever done
    But I am alive 6 months later
    I have a feeding tube in for 8 months, I just started to eat
    I lost 60 Lb’s
    Yes have her take radiation as long as she can take it radiation and chemotherapy seems to save lives
    I hope all goes will god bless

    Hi, Brenda:

    I wondered if your daughter completed the radiation sessions. (I did). I had an aggressive cancer that started with one sore in my mouth. I had surgery. Right after surgery, the cancer went to the other side of my mouth, and my lymph nodes, so I had another surgery. I was told that if I “wanted to try to live,” I needed 3 aggressive Chemo treatments and 35 radiation treatments. I was “warned” how tough the radiation would be, and to be sure I wanted to live “enough” that I would complete all of the sessions. I wish I would have looked for a discussion group like this for support during the radiation. It really would have helped me. If anyone needs that support, I would really like to help with that. ( My Mom couldn’t stand what it was doing to me, and kept asking if I wanted to quit. I kept telling her that even if I quit, the bad effects would keep going on for quite a period of time, so I might as well complete it, and I did. If anyone wants to talk about it, I hope you reply to this. It would have helped me a lot.

    I go for 8 of 8 Chemo on Wed and 28 of 35 Radiation on Monday, I was diagnosed with stage 4 cancer . Not the easiest thing I have ever gone through. I started getting IV Hydration and Steroids three times a week.Shelly ??????? My Dr told me in the beginning that at the end I would feel different……Have you felt any different ????? just wondering what to look for…….Thanks Bill

    Did you feel any better the week after treatment? I can barely eat sleep constipated burnt. Living hell. Need something go look forward to. Thanks for your response….

    I had a rough time with my 7 chemo and 33 radiation treatments but here I am almost a year later and taste is back, got rid of my feeding tube about 6 months ago and I am enjoying living again. It was pretty tough at times. Hang in there.

    I just got finished with radiation 33 sessions and not only was it the worst thing i have ever been through i could not even work which caused me to lose everything i own i would recommend anyone and everyone to get tested
    for head and neck cancer

    Hi, Jamison: I wonder how long ago you finished, and how you’re doing now. My radiologist “warned me” that — at the end, you don’t just start getting better. It might be worse for quite a while. ( Unless someone has gone through it, they have no idea how tough it is. But I’m so happy I finished it. Now I have a “chance at life”, and the longer time goes on and I’m cancer free, the higher my chance of living a full life is. I feel like my life is starting over!

    I am 48 years old and was diagnosed with stage IV throat cancer June 6 2020 due to HPV. I had 3 rounds of chemo and 35 radiation treatments. I lost 68 pounds and was on a feeding tube for 7 months. The radiation treatment was much harder for me than the chemo. My last treatment was in August 2020, since that time I’ve have had two pet scans and I’m cancer free. I still have swallowing issues, dry mouth and my tastebuds have not fully recovered. I do have my normal energy back now and that is a great feeling. I’m not complaining things get better with time but it is a long process. Keep Fighting friends!

    I had tongue cancer in fall of 2018. Seven weeks of radiation , 5 days a week and 1 round of chemo week for 8 weeks. dropped 70 lbs. , lost the ability to swallow liquids, eat and talk.
    8 months of treatment with a speech pathologist to re learn how to swallow and eat again.
    Now 30 months later my CT Scan saw something 2 CM in my throat. Now on Friday May 07,21 I will get a PET Scan to see what is going on. I just buried a friend from cancer last week. Pray for the best, but then mind is spinning.

    Wow, this is eye opening. Today, January 25th 2022. Been notified that I have tongue and throat cancer. Radiation and chemotherapy start next week. The doctor told me some of the stuff that I will have as stated above in other post. Reality is really hitting me now. I did not know about the feeding tubes. He told me that it would be important to keep my weight up and so forth. Eating would be tough everything tasting like garbage while feeling like your eating razor blades. I’m by my self for now and wife will be with me a little later around week 3 or 4 of treatment. This makes me truly realize how much hell I will be going through. The 7 weeks of chemotherapy and radiation treatment but the 8 months later of recovery hoping all is well. Did not know about feeding tubes and so forth. God have mercy on me and pray that I get through this over time. God bless your families and friends as you go through this as well.

    God bless you and good luck I am 48 was diagnosed with voice box cancer in December in week 3 of radiation have 2 times day for 6 weeks hardest thing ever been through hard to eat no tast a lot throat pain haven’t been able to work last couple days I just keep praying it gets better

    I just got done with 6 Chemo and 35 radiation for HPV on the tongue . The one thing I can tell you is do what your doctors tell you and buy a lot of supplement drinks. They are not the best but they will help with protein. Also talk to your doctor. If something is bothering you call the doctor. It will not be easy but you got this! I am cancer free as of a week ago! Prayers for you! Feel free to email me if you have any questions. Anncbrick@yahoo.com

    My husband is 3 weeks post treatment for stage 4 hpv positive throat cancer. Not gonna lie these 3 weeks post treatment have been hell. He barely can eat anything but 1 ensure shake a day and maybe some baby food. He has no energy and has to be watched all the time for fear of falling. I’m just wondering if this is normal or if it is more specific to him. He’s 61 and we almost lost him 2 years ago to the widow maker heart attack. He was saved by open heart surgery and 6 weeks in ICU and another 6 in rehab. He fought so hard to come back to us. He was doing well and was at 70% of pre heart attack stamina. Then we got blindsided with cancer diagnosis in Sept.
    He had to do so much dental work before treatment but started 7 rounds of chemo and 38 rounds of radiation around Thanksgiving. First 2 weeks a piece of cake but third week it really hit him. On his last week he had to be admitted hospital for severe dehydration. The cough, the mucous, the dry heaves, the no taste, hearing loss and last but not least the hair loss – it’s all unbelievably difficult . Harder that the heart recovery! God bless you all who are going through this. I keep faith it will get better. It just had to right? I just need to read about people who have gone thru it and come thru the other side. Good luck to you all.

    My husband, Steve G., was diagnosed with Stage 4 HPV throat cancer Dec 2020. He had chemo and radiation which seemed to eliminate the tumor but 7 months later it regrew aggressively. The tumor was removed but had throat reconstruction by replacing the throat tissue with skin from his left thigh muscle and pec muscles on the right side. He is now on a last ditch effort with immunotherapy. It is expected that immunotherapy will increase his life expectancy 15 to 20% if it works. So if he makes it till end of 2022 he is likely to live another 2 years. He will soon be 63. I am in a John Hopkins study for women whose husbands have HPV related throat cancer. So far I’m not infected. A friend of mine had a similar issue with her husband but they caught it early but 5 years later his teeth are falling out from the radiation despite the intensive shielding. Cheryl G.

    My father diagnosed with 4th stage mouth cancer…went surgery in July, he is diabetic patient…..not yet recovered from surgery even after 3 months…. worried about radiotherapy as already crossed 8 weeks.

    Hello, My name is Shennette I was diagnose with Thoat cancer right it’s scary to think of but,I went did all the tests of course I had to do the treatments, thank you for your story..I am still recovering but everyday it’s different but I am making it through with the prayers and all..

    My husband was diagnosed 2019 with HPV Head and Neck Cancer .
    Was already stage 4. And it had spread to lungs .
    Cyberknife put it all at bay.He went thru chemo and radiation. He looked great did great while
    They had him on immunotherapy. You never would have known he had cancer. At the very start they told him 4-5 years to live .
    When he got pneumonia they stopped the immunotherapy temp. Then they decided to
    Wait to put him back on immunotherapy. The one thing that was keeping the cancer at bay and he was doing great.
    Unfortunately he passed
    Away exactly 4 years later Sept 27,2022. He had gone in hospital for pneumonia and was feeling better but the dr came in to room and said the cancer was everywhere and nothing more they could do. And suddenly he was on hospice. Exactly 30 days from them putting him on hospices I watched him pass
    It happens so fast . He was doing good . Then suddenly he was gone. I blame dr for taking him off immunotherapy.he would still be here if they had left him on it. PET scans were coming back
    Good. Til they stopped immunotherapy. If you get offered immunotherapy do it .
    Doesn’t make you sick
    Did it 1 x a month. And it was working so good. .

    I am throatcancer survivor now completed radiation and chemo and cancer free for year now. I now have hypothyroidism from damage from treatments. Having problems getting adjusted with meds. Has anyone else developed this

    I have stage 3 tonsil cancer as it’s spread to my lymph nodes on one side of my neck. I start treatment next week but I’m not looking forward to it, I am also a type 2 diabetic with high glucose levels.
    It sounds scary but I’m glad to hear that it does pay to have the treatment.

    Last February I was diagnosed with HPV 16 positive squamous cell carcinoma. It started in my right tonsil and I detected an enlarged lymph node. The cancer had spread to my node. After diagnosis, I was able to get an appointment to MD Anderson Cancer Center. After examinations, they informed me I was a good candidate for surgery. March 20, I had roto surgery for the tonsil and a neck resection. The surgeon believed that he was successful in getting all the cancer, but he discovered that the lymph node was branching out. So I needed radiation therapy. I just finished radiation on Monday July 3rd. I was fortunate as I was able to use Proton Beam Therapy. I successfully completed 6 weeks of treatments. I had some side effects, but did not loose weight or have to resort to a feeding tube. The Proton Therapy is harder on your skin, but is less damaging to the surrounding tissue. I’ve got a few mouth sores, a bit of a sore throat l, can’t taste anything and my skin feels burnt. If anyone else is diagnosed with head and neck cancer, and are prepping for radiation, I would highly recommend looking into using the Proton Therapy. My next appointment for a CT Scan is on September 1st. Thanks

    Curious as to how well you are doing. How was Pet Scan on Sept 1? I am scheduled for surgery June 3, 2024. Same diagnosis only left side. Robotic removal of tonsil and removal of at least 2 lymph nodes but most likely all on that side of neck.

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