My 34 year old daughter was diagnosed with Squamous cell carcinoma of lower left jaw in August 2018.
She had flap surgery in September. Radiation in November and December.
She has other disabilities and will not participate in this forum. I am her caregiver and hope to gain
knowledge from people in similar situations.
Thanks, Connie

At the moment I am trying to figure out what is normal and expected under the circumstances.
My daughter finished radiation about five weeks ago. Ten days ago her swelling was decreasing, she was eating
about 80% of needed calories, and could open her mouth the width of two fingers. Then suddenly she had
a major swelling episode, cannot eat, and can't even open her mouth the width of one finger.
Fortunately she has a peg tube and can get needed nutrients. But this setback surprised us, although
I should have expected something. I am hoping others can tell us if they have had similar experiences.


*****ADMIN*****Added third post to ongoing thread......
I'm wondering if anyone has had issues with swelling improving and then coming back with a vengeance.
My daughter finished six weeks of radiation on December 18th. The pain and swelling slowly decreased and she
was eating about 80% of needed calories (vs. peg tube). About 9 days ago the swelling came back
in a big way. She can just barely open her jaw, and cannot eat. Pain is back.
Pushing to see surgeon next week (5 hour drive). Would love to hear from others on this.

Thanks, Connie

I saw your other post up above too ... I am so sorry she's experiencing this! Setbacks are common, but it's always a good idea to get it checked out, especially if it seems extreme to you. It's possible something got infected (even something completely unrelated to the surgery, like a tooth), and the body just can't fight it off real well right now ... so getting it checked and possibly medicated if appropriate is a reasonable thing to do. Do you have a local doctor or dentist who could at least take a quick look and see that there's not something different going on? Infected gums or something? (I don't know or think that's what's going on, but it certainly can happen, and a local doctor would be a shorter drive and something to ease your mind while trying to get that appointment with the further surgeon. And if it does turn out to be something like that, meds could be started.) Also, yes it's entirely reasonable to still be having pain issues, as things come and go during the healing process. I didn't have a flap surgery, so all I know is that it's a bigger deal than what I had ... and I was still hurting by the point you're describing. Though I had wider mouth movement, probably due to a simpler surgery.

I hope others who've had experiences closer to your daughter's can chime in quickly for you, but maybe this will at least give you something to start with. Many ((hugs)) for you both, and welcome to the forums. This is a good place to be to find help and answers and ideas.

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.