Well, I had a PET scan yesterday and it came back clear. Oncologist suggested necrosis, since nothing showed up on PET scan. Will necrosis show up on a scan? or do just active cells show up? They suggested calling my ENT about the pain, However it looks just like it did a year ago when my PET lit up and it was just necrosis. I do know that necrosis has to be removed as well. How do you really know the difference without a biopsy? SO frusterated, because talking and eating have become very painful. You all know I have to talk in my teaching job. However I do not think my students would mind if I had to quit talking. LOL

I don't know but my understanding of a PET scan is that more active cells use the sugar at a higher rate and cancer cells are the most active. Not sure how a PET would show necrosis, or maybe they're juswt doing the process of elimination.

So we have eliminated active cancer cells through the PET scan, so I guess now I will be headed to the ENT as soon as I possibly can to have him take a look and get is opinion.

Angelia, no cancer is great news! I know you are hurting and how much that really stinks. Ive heard osteoradionecrosis can be quite painful. From experience I know nerve damage can cause excruciating pain. I hope you are able to take something to ease the pain. Good luck with everything!

Good Luck Angelia -
I hope your docs. can fix this.

Marlene

Hi there,

As someone who's currently dealing with widespread radiooesteonecrosis in the left side of my head, I can tell you it can be a significant issue to treat.

I was first diagnosed with necrosis nearly two years ago, and it's only been in the last two months that they have fully quantified the extent of the necrosis.

It's taken a variety of different scans, and a radiologist willing to take on the task of doing extensive, comparative analysis of the results, to fully understand exactly where the necrosis ends and where healthy bone begins.

In my case, there is a baseball sized area involving both the mastoid process and the temporal bone. The necrotic bone has placed pressure on live bone, specifically a bone spur that's developed as a result of radiation has been pushed into my middle and inner ear, rupturing my eardrum. Since it's live bone, the exposure to air is excrutiating. That, coupled with the pain from the necrosis itself, has made for a bad couple of years.

Complicating this issue is finding doctors willing to undertake something that has no real treatment history has made this a really difficult issue, but that's a whole other story.

Contrary to conventional wisdom that would suggest dead bone = no discomfort; quite the contrary. It is VERY painful. In most cases it does need to be removed because of the potential for other problems increases if it's left alone. Hopefully your Doc can get a handle on the extent of the necrosis without too much additional work, and can get on with resolving the problem for you. It hurts, and it's good to know that they're going to at least try to stop it from hurting. Good luck!

Just thought I would update, that the pain is decreasing, and the place one my tongue that was worrisome is almost completely healed now.

Nice..thanks for the update!!!

Yeah!

Here is hoping that the pain and the spot on your tongue go away completely