I wish I knew what questions to ask before starting cancer treatment for my throat. It’s a given that chemotherapy and/or radiation treatments are medical procedures that are meant to deal a bad blow to cancer cells, but they may also pose a risk to healthy tissue as well. I wish I knew then what I know now about side effects. I might not have been able to do anything differently, but at least I’d know what to expect.
I was told about the obvious side effects: for example, I was told that the radiation would make my throat feel like it has the worst sunburn ever and that swallowing would be painful, and that the skin around the base of my throat would turn red and potentially peel. There were other side effects that I wasn’t prepared for, and that’s what you should ask about.
Are there any long term effects or potential risks? I was told I could have kidney damage, experience a heart attack, and that my swallowing may never return to normal. I didn’t know that lung scarring, thyroid damage, and coughing that sounded like a severe respiratory infection were also side effects.
Will taste, hearing, sight, speech, swallowing, mobility, etc be affected? In my case, taste was affected (even water tasted “off”) but it has since returned to normal. I completely lost my voice as well; it has returned, but it isn’t the same as before (my voice cracks a lot). My sight wasn’t impacted, but my hearing was and now both ears need hearing aids. Thankfully mobility wasn’t impacted, although I was too weak to go very far on my own. Swallowing was a problem due to the cancer itself, but as the tumour shrunk inflammation caused swelling, and so the swallowing difficulties continued. Enter the gastric feeding tube. I’m happy to report that, after one year, my swallowing has returned to completely normal and I’m enjoying all foods again 🙂
What about hair loss, nausea, radiation dewlap that makes you look like a bullfrog? Different chemo treatments result in different side effects. Mine, high-dose cisplatin, caused my hair to thin greatly (even my eyelashes and eyebrows) but I didn’t lose it all. It grew back in curlier than before, however. Nausea was a minor nuisance for me compared to other patients at the centre. Anti-nauseants worked wonders for me. As for radiation dewlap, I’m told that it will disappear in time. Until then, I’ll have to get used to looking like a bullfrog in the morning. One of these days I’ll post a picture, if I feel brave enough LOL.
Are there any special instructions such as drink plenty of water after chemo, use a separate bathroom, avoid exposure to illnesses? I was told to drink plenty of water to flush out chemo so that impact to the kidneys is lessened, but I couldn’t swallow and therefore required home hydration via IV following each chemo session. I was also told to avoid contact with anyone who was sick, because my white blood cell count was down and therefore I was more susceptible to serious infections. I was also told to take my temperature every day, and if at any point it went above 101° I was to go immediately to the nearest emergency room. It did, and I did go, and I ended up in isolation until they started me on antibiotics. I was told I should have my own bathroom especially after chemo, in order to avoid anyone else accidentally getting in contact with chemo from body waste (not that I would make a mess, but it was a precaution.)
Should you mostly rest, or should you exercise? My doctor wanted me to rest, but I know of others who were told to exercise to flush chemo. Personally, I wasn’t able to do anything but rest.
Make sure you understand procedures before you go in: Can you eat beforehand? Can you take your regular meds? Do you need a driver to take you home? I couldn’t eat before the scope procedure, nor for the CT scan, but I could before chemo and radiation (if I was able to swallow). Driving was a no-no for me.
What are the policies of your treatment centre that you need to be aware of, such as is it a scent free environment, are you allowed to bring a companion, are children allowed, how long is your appointment, etc?
Will you need specialized equipment, bedding, medications , or over-the-counter supplies?
Will chemo or radiation have any impact on your current medications, and vice versa?
What about anemia, liver damage, fatigue, etc.
Do you need any dental work done? Radiation scatter may affect the jaw bone and teeth which makes any dental work more complicated post-treatment. You may also need to use a toothpaste with a higher fluoride content than the regular shelf brand. Also be aware that some chemo drugs may cause mouth sores.
The point of this is, don’t be afraid to ask questions about procedures, policies, side-effects, anything that comes to mind, but make sure you ask qualified medical team members. The last thing you need is well-intentioned but bogus advice from well-meaning but ill-informed “advisors”, and believe me, there will be plenty of those. What works for one may not apply to you.
And finally, just a friendly reminder: the symptoms, side-effects, treatments, etc. described above are descriptions of my own personal battle with cancer, and may not necessarily be applicable to any one else.
Next: Radiation Pre-planning Procedure