Hi all,
I have some questions about base of tongue cancer. My father was diagnosed this week, but all he told me is that he has "cancer". We live in different countries, so most of our communication is by email. In the email in which he told me that has cancer, he told me only that he is starting radio/chemo today (must be within one week of diagnosis, I'm guessing), and he requested that I NOT telephone him because speaking is causing him pain. I called anyhow, but it just goes to answer-phone.
So, my question to the forum is this: how advanced would a BoT cancer be if he has pain talking before he has had any treatment? All my googling just told me that pain with speaking and eating is usually a side effect of treatment. But dad hasn't had any treatment yet. He starts today.
Any comments gratefully received.

Hi Debo,

I feel your anxiety and wanting more specifics but as the two other threads have asked for more information in order to help, there is not much more to do at this point.

Unfortunately, without more details it is very hard to assist, other than just offer speculative responses which serve zero useful purpose.

What I can offer about pain in general during period around diagnosis is BOT primary and associated lymph nodes do not generate much pain. Many report no pain or some general discomfort as the tumor grows but not very often real severe pain.

Those with oral cancer of the jaw and other places tend to report more discomfort and pain earlier on.

Please try to not let your mind get any further than the facts you have. You really need to have a real-time discussion with your Dad or someone who he has shared more detail. Otherwise, you WILL go more crazy with worry and such without hard facts.

Even with all the details, every oral cancer case is unique and very complex as there are many variables that define each patient's experiences.

Call again, and again. It is the only way you will be able to get more informed, don

Hi Debo

Your father may not have cancer on Base of Tongue (BOT) which is a particular part of the tongue which cannot be seen just by looking in the mirror because it is down the throat. It is possible your dad's cancer is on the bit of the tongue you can see which is called oral or anterior tongue.

Until you can find out where exactly it is, as well as what his treatment might be, it is very difficult to help you out with your questions.

Maybe you can ask permission of your Dad to get his doctor to explain it to you so that he doesn't have to? This might be via email or phone.

Questions might be: what is the name of the cancer and where is it? What is the medical term for where it is. What is the treatment going to be? What is the name of the chemo drug how often will it be administered? How long will the radiation go for? Is surgery going to be part of treatment?

Regardless of the above, there are some fairly standard things that people go through. Radiation is usually for 35 days over a 7 week period (5 days a week with weekends off). Most people tolerate the radiation quite well until around week 3 or 4 when the ulcers, and pain set in. Chemo (depending on what type and how often) might contribute to the general feeling of being unwell including tiredness. He might experience changes in taste, lose his appetite or have difficulty swallowing. He may also lose his saliva.

He will have pain at some point and which will make eating close to impossible before it starts to improve about 3-4 weeks after radiation finishes. Alex could not eat anything at all for 12 weeks only now starting on solids 3 years later. For him, the radiation blasted through his swallowing function and paralysed his tongue causing him to have learn a different way of chewing and swallowing. Alex had cancer on the BOT though and we are unsure of where your Dad has it.

Everyone is very different though and your father might follow the "norm" or have a different experience.

He WILL be tired, cranky and in pain - that is guaranteed and you need to do what you can to keep him happy. Some people don't want a "fuss" and this needs to be respected. If he says don't call, then don't call. Stay in touch by email and don't stress if he doesn't respond immediately. He has issues that are way bigger worrying about your sensibilities right now. Once he settles into a routine of sorts, he may be better able to organise things and one of the things he might consider is designating someone to keep everyone in the loop. This will free him up to face the task of getting through treatment which should be his first and only priority. It is your job to support him through that as much as you can from a distance.

Unfortunately the members of the forum would not be able to answer your question. Everyone tolerates pain on different levels. Maybe he has thrush???? That hurts like heck and would make talking difficult too. Not every person who has cancer is in pain. Many base of tongue cancers go misdiagnosed or completely missed due to lack of pain. Trying to help someone long distance is not going to be very easy and will be very stressful trying to get info.

I suggest you contact people who can check on him face to face and have them report back to you. If you father has had a biopsy with a cancer diagnosis then he will need support to get thru the treatments. He may need a major surgery to remove the tumor or weeks of radiation which has its own set of complications. All this is guessing as I have no info to go by. One thing I do know for certain is that he will need help. If you cant be there can you find someone or even hire someone to help him over the next few months?

Best wishes!




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