Hi Sue
I nasopharyngeal cancer - stage 4 - in 2006. I was on feeding tube during 7 weeks of radiation and after the entire treatment and with time to heal, I was almost back to norm.
But during COVID pandemic and restricted to working from home (live alone) - I suddenly find that my speech was very much impaired and same goes for swallowing. I was absolutely in a panic mode. Connected with my oncologist and ENT team - was diagnosed with severe neck fibrosis and dysphagia / dysarthria - long term side effects of radiation!!
Like you - I have been doing dysphagia exercises and whatever to get my neck, jaw & mouth exercises.
With this late effects of radiation - it tends to change my lifestyle around - i.e. issues with speech and hearing, and not able to swallow food properly (most times I have to spit out whatever gets stuck in my throat).
Meanwhile, am doing my best in exercises to prevent deterioration of these side effects, and trying to be 'ok' on my own (it's a challenge to have friends and/or people understand and aware and accommodate 'invisible' disabilities!)
Keep well !
@josk this is a perfect example of us not using muscles and they atrophy from lack of work. I have facial muscle paresis from my cancer surgery and spending time alone without talking, smiling, facial expressions results in a lack of ability to use those muscles. That also emphasizes the importance of therapy to rebuild the muscles with proper exercises. Swallowing and speech therapy is an important part of long term recovery of these skills. Patients must often ask their doctors for referrals for this followup care as they often do not see the patient enough after surgery to see the struggles. Thank you for sharing your story as an important reminder.
My husband's big concern as we complete radiation is that he won't ever be able to swalliw again and will be in and out of hospital with pneumonia. Each time he is weaker than before. He'll struggle for an hour and not swallow once. He gets very frustrated.
@phyllisg you and your husband are right to be concerned. Please ask about therapy for swallowing as this is usually done by a speech therapist. Your doctor can make a referral. Also remember that nerve tissue is very slow to heal, so damage done by surgery can take months to years to heal. My facial nerve was severed due to tumor involvement and while it was reattached, the nerve fibers don't heal and grow together quickly. At 5 months after surgery the doctors could tell that there was a little muscle tone returning but I saw no change yet. At 7 months I could see slight improvements in moving my tongue and a twitch of muscle when smiling. It continued to improve and change over the next 12 months and changes still happen now 12 years after surgery. Not using my face muscles by not talking and smiling and changing facial expression make me lose some of the muscle tone and strength so then I double up on my exercises. Learning the proper exercises with therapy will help him to keep what function he has as the nerves heal. Don't give up hope, this is a slow process. Ask about therapy.
It’s helpful to hear I’m not alone with swallowing issues. Mine came 14yrs after breast radiation to exposed my esophagus. It started 5 wks ago. I’m doing protein powder, raw egg, yogurt, coconut milk and various fruit in blender. I also make a strong chicken and bone broth that I drink through straw
@evelin, I'm sorry to hear that you are experiencing this last side effect of radiation for breast cancer. Have you worked with a speech language pathologist to help with this new-ish swallowing issue?
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@josk this is a perfect example of us not using muscles and they atrophy from lack of work. I have facial muscle paresis from my cancer surgery and spending time alone without talking, smiling, facial expressions results in a lack of ability to use those muscles. That also emphasizes the importance of therapy to rebuild the muscles with proper exercises. Swallowing and speech therapy is an important part of long term recovery of these skills. Patients must often ask their doctors for referrals for this followup care as they often do not see the patient enough after surgery to see the struggles. Thank you for sharing your story as an important reminder.
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2 Reactions@phyllisg you and your husband are right to be concerned. Please ask about therapy for swallowing as this is usually done by a speech therapist. Your doctor can make a referral. Also remember that nerve tissue is very slow to heal, so damage done by surgery can take months to years to heal. My facial nerve was severed due to tumor involvement and while it was reattached, the nerve fibers don't heal and grow together quickly. At 5 months after surgery the doctors could tell that there was a little muscle tone returning but I saw no change yet. At 7 months I could see slight improvements in moving my tongue and a twitch of muscle when smiling. It continued to improve and change over the next 12 months and changes still happen now 12 years after surgery. Not using my face muscles by not talking and smiling and changing facial expression make me lose some of the muscle tone and strength so then I double up on my exercises. Learning the proper exercises with therapy will help him to keep what function he has as the nerves heal. Don't give up hope, this is a slow process. Ask about therapy.
@evelin, I'm sorry to hear that you are experiencing this last side effect of radiation for breast cancer. Have you worked with a speech language pathologist to help with this new-ish swallowing issue?