Welcome to OCF, Connie! Im very sorry to hear about what your daughter has been thru! You've found a great resource to learn about oral cancer (OC). We can help you to better help your daughter with info and support. Being a caregiver is NOT an easy task! Try to make some time just for you even if its just a walk around the block or going out to lunch with some friends.

If your daughter has not already been back to see her doctors about the recent changes I suggest taking her in to get checked out right away. The recovery phase can be a long, frustrating time for OC patients with ups and downs and a few set backs as well. Unfortunately, many patients will have set backs that pop up out of the blue. After everything they have already been thru this can be overwhelming. Having your daughters doc give her a good exam will rule out anything serious behind the recent drastic changes. As with anything affecting swallowing or breathing, pay close attention to if your daughter seems to be having any difficulty with her breathing. That would need immediate medical attention with a trip to the ER. All doctors are always on call or they have someone handling calls 24/7. You know your daughter best, if your daughters condition needs immediate attention, call her doctors. Its always better to err on the side of caution and get checked if for nothing else to ease your mind your daughter is ok. Hopefully its nothing serious! Maybe shes having an allergic reaction or picked up a cold or other upper respiratory infection? The swelling could be why your daughter is in pain again as something inflamed could be pressing on nearby nerves.

One very important thing to remember is a complete recovery takes up to 2 years after finishing rads. Her intake (for at least a year post rads) needs to be higher to help the patient to rebuild their body. I was very glad to see your daughter currently has a feeding tube in place! Every single day your daughter should be taking in at least 2500 calories and 48-64 oz of water (formula counts as water). I know it sounds like its alot but OC patients burn calories at a much higher rate than an average person plus her body is working overtime trying to rebuild itself.

I suggest you read and learn more about OC and recovery thru posts here and also on the main OCF site. You are no longer alone with this, we will do our best to help you get your daughter thru her recovery phase. Hang in there!!!! Best wishes with everything and please let us know how your daughter makes out with her recent setback.


PS... I just saw and moved your third post.... Did your daughter have an ENT or radiation oncologist? What doctor has been overseeing your daughters care? Those would be my suggestions as the best docs to check your daughter. Surgeons operate and since your daughters surgery was quite a while ago (plus it was prior to rads) which is why an ENT may be the best doc to check her out. With these recent changes starting 9 days ago your daughter should get seen as soon as possible to rule out any serious medical issues.