Advice Needed! UPDATE
Thank you to all the wonderful people on this board....
I wonder if I could get some feedback please?
I'm just 4-1/2 months post chemo (5FU & Hydrea) plus radiation (35 treatments) 7 rounds for tongue cancer. Surgery to remove left side tongue cancer 16 months ago. 2 surgeries to move affected lymph nodes, then tx. Radiation field also hit and cleared another affected node. TX ended 9/5/14. T1N3. 2 scans, October & December. Both NED.
No Peg. Eating pretty well, swallowing better but still have some pain that comes and goes. Some mucous but that's getting better too.
The issue is pain along the right side of tongue. Talked to radiation oncologist today to ask if the pain could be from radiation Treatment. He said doubtful. Then said could be new cancer that is very small. Could be hidden. This can sometimes cause pain. Could have crossed over. But he also said it could be caused by scar tissue (I had a biopsy in this area) or nerve pain. He said to just "wait and see"!! By now I'm a mess and scared out of my mind.
Next, I talk to the ENT surgeon AGAIN who has examined my tongue 2x since November (had pain at that time). He feels strongly this is not cancer. There is nothing on my tongue, nothing he can see to indicate cancer and the scans were clear. He said if this was cancer, there would be some evidence of it by now: showing up on a scan, presentation in clinic or a mass. I have none of these. He said since the pain has been going on at least since october, any microscopic cancer would have shown up on scan by now. He called & talked to rad Onc and they agreed. ENT still thinks it's a nerve issue. He sent me over to pain management dr who prescribed meds. Haven't taken them yet in part because I thought I could tough it out and in part because of side effects. I think I'm going to give it a try.
I'm starting to get confused and upset about this whole thing. The ENT has reassured me that nothing he saw when he last examined me in December that indicates cancer and scans are good.
Since all this treatment it's hard to tell what is a side effect of the treatment, a possible new cancer, and what is just the "new me". What I'm feeling right now is very different than the old me.
Sorry for the long post. Shouldn't I be pretty much back to (Abi) normal by now? I honestly don't even know what that is. Maybe I could deal with the new me if I wasn't in pain. I'm worn out worrying. I don't have another scan until April. ENT didn't think I needed to bump that up and get it sooner. Asked him what my chances are for surviving this and he said "very high". This is a relief but I still worry about the pain. Sometimes I feel like I have pain in other spots, or I worry when I have a pain in my neck or a headache, or sometimes I think I'm feeling pain in my sinus or teeth. It's crazy and I'm driving myself nuts. I just don't know what to think anymore. I need help sorting this out.
Any thoughts or feedback would be appreciated. I'm feeling mixed emotions. Even though ENT gave me words of positive encouragement, I'm feeling depressed. Don't understand this at all.
I try to talk myself down from the ledge by thinking rational about the situation.....Two scans since treatment ended. Both NED. Had pain at least since October. Even if this was microscopic cancer in October, something would likely have shown up in the December scan as this tends to grow fast. No lumps, masses or bumps. Does this make sense? ENT agreed with this logic.
****I want to understand how my right side tongue can hurt if this side was not treated. My medical oncologist told me that it could be from radiation, but then the radiation oncologist told me this was unlikely. They contradicted each other!!! I was going along, up until now, thinking the pain was from radiation and I would just have to give it time. The ENT is still going with the idea that it's nerve pain.
Does anyone know if radiation or chemo can cause nerve pain??*****
Thank you to all for being "there" And taking the time to read all this.
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