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Radiation side effects with H&N cancer. When will they ever end?
Head & Neck Cancer | Last Active: Dec 11, 2023 | Replies (141)Comment receiving replies
I don’t get any follow-up whatsoever. I have to figure out everything for myself. There’s no systematic effort or process to help cancer patients deal with the long-term effects of radiation if they manage to survive the disease. I don’t think the oncologists who treated me expected me to live long enough to have to deal with the lingering effects of radiation.
Decades ago I tried to contact the American Cancer Society in Texas to encourage them to help cancer survivors such as myself and the nurse who spoke with me was actually *offended* that I was suggesting that a cancer survivor might require any kind of medical treatment for the after-effects of chemotherapy or radiation. This would have been in the late 1980s. That left me permanently disgusted with the American Cancer Society. I will never forgive them for that. I know they offer lip service to survivors nowadays but it’s at least 30 years too late in my opinion.
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I went to San Diego for my treatment (Nasopharyngeal carcinoma) but live in Oregon. I have an oncologist and ENT who see me routinely, test me regularly, and treat the aftermath of 40 treatments of radiation and 7 weeks of chemo. Both are very pro-active in my care. For this I am grateful. Dealing with the lingering effects of radiation has been a challenge for me.
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Head and neck cancer seems to be rather unique in the after effects of treatment, most likely because we are treated in a very touchy area. We need to breath, eat, talk, and all that entails whilst the treatment attacks these necessary functions. It’s no wonder that cancer experts often have little idea why we have issues when others don’t.
I was the first H&N cancer for my oncologist and I understand by the time he retired he only had one more. It’s not a common cancer, except of course for this group.
Don’t get too discouraged. At least you have people here to bounce questions off.