It's sad that your doctors seem to be so closed mouth about advice. Mine was too. The way I got around it was by all the suggestions I received from forum members right here. Early on, someone suggested I get a spiral notebook and make questions lists for my doctors, my nurses, etc. I did that and every week on "doctor day" had a whole list of questions to ask everyone.

While the nurses were more open and helpful in their answers, the doc wasn't. At first he would try to give me the short answer, you know the one that doesn't really answer your question, but gets him out of the exam room the fastest. He's busy, he has a lot of patients to see, I understand that, but I have needs too.

If you accept the short answer you just go home confused and have to ask it again the next week. I went through that a couple of times until I realized, if I don't understand it fully right now, then ask for more detail in his answer. The RO finally got to where he didn't give me the short answer, but a better explained one that I could understand and then act on.

I'm not trying to defend the doctor. One day, after really pressing him for more detail, I semi apologized by saying I'm just being your average patient, wanting to know this stuff. He replied, NO, you are not the average patient, most of my patients don't want to know anything about what's going on. You are very inquisitive and that will benefit you in your treatment, so keep on asking questions, I will keep on answering them.

Ironically, after about week 3 or 4 of treatment pretty much all my questions were answered, so doctor day's became uneventful. I had very few adverse symptoms during treatment. Because I didn't hurt and had no difficulty swallowing a quick look down my throat and an "everything looks really good to me" became the norm. He would then ask what questions do you have for me this week. I almost felt bad if I didn't have at least question for him; I think he started looking forward to my questions. So, I made it a point to have at least one question every week.

I did get mucositis in week 7 of treatment, something to actually discuss with him. I already knew what it was and that other than keep your mouth really clean (frequent brushing, mouthwash, etc) there isn't anything he can do for it.

But, just in case I was wrong, I asked if it was mucositis ... it was. About all he could say then was you are very lucky, you have been very lucky throughout all the treatment phase, most of my patients get it in week 2 and have a lot harder time during treatment than you.

Sorry if I ramble, I like to hear detailed answers, so I give detailed answers.

Tony