Metabolic Activity on Pet/CT scan. Inflammation vs Malignancy

I am being treated and having follow up at Mayo Clinic for HPV head and neck cancer and am experiencing similar issues. My first PET 3 months after treatment showed uptake which they chalked up to inflammation. I just went for my 1 year follow up and the Pet showed uptake again. They did a separate CT scan and scope which showed nothing and I took a Navdx test which came back negative. I am going back next month for an MRI with contrast to be on the safe side.

Thank you for your reply. You are being treated at the top place and me as well at UCLA. I will wait to see what my medical team says but would also love to keep on top of your MRI. I am unsettled with the "wait and see approach" but I get it. I might ask for specific dimensions of the enhanced focal area or whatever we are calling it. I'll pop you in my prayers as well. Thank you

I will let you know about the MRI. It is very stressful I know, I hate the wait and see approach. I will keep you in my prayers as well!

My first Pet scan 3 months out showed “surgical changes” and my surgeon said NED. I have my 6 month. MRI in a few weeks. I’m going to ask for another NavDx test too as the last one was negative after surgery but no follow up tests yet.

These follow-up scans after the hell you have all gone through already can really add to your anxiety about re-occurrence. And I hate to add that it can take years before you are comfortable knowing that this cancer is probably not coming back. Best advice I had was to convince myself that the nightmare is over and time to get on with living. It doesn't work 100% but it does help. Odds are you are all fine and on the mend. However, I sure do understand the worry.

My 3 month shows the same as yours. They looked my throat over with the scope. No alarm on their part. It is just healing. 35 doses of radiation takes a long time to completely heal. I am eating solids now 4-5 months out and yet if I irritate that area , it starts to hurt, like pulling a scab off or something. It takes time to heal and as it does there will always be come uptake. So I am told.

Congratulations, it looks like you got this. And your being smart by keeping your eye on the ball. You are lucky you are P16+ to have that NavDx biomarker test. Best of Health!

Thank you for your response. I like your patient approach. I especially appreciate your input about diet. I had my throat dilated and now, like you, I am able to eat solid foods which makes me feel normal again. But I need to keep caution of inflammatory foods and spices that can irritate the tumor like you said a scab. Being mindful of this moving forward. Thank you.

Thank you for your upbeat feedback and guidance. Unlike Breast Cancer ( had that too ), there are minimal resources and SO many moving parts and factors. I appreciate this forum since I don’t want to burden my spouse and friends. I’ve learned a few things here. Thank you.

I wanted to post a follow up that I just had my MRI with contrast after having the uptake on my Pet/Ct scan 6 weeks ago and there was nothing found to correlate with the Pet uptake. No lesions or masses. I did have a bit of ORN in my jaw before and was treated with PENTO therapy which worked wonderfully which might have been a reason for uptake. But it feels good to get a GOOD MRI scan. Normally if you have dental fillings/ hardware there is artifact with CT scans so MRI scans tend to give a bit better pictures which is why I had suggested one.