Hello all,
Just found you and it’s great to read the great advice offered here!

I was diagnosed in Dec ‘18 with stage 1 tonsil cancer, with one lymph node involved, out of 44 removed. I had robotic surgery for the primary, and a neck dissection. Margins were clear, but I followed up with a different institution, 30 fractions of 60 grays radiation. I’m 3 months past treatment, and have still been fighting thrush. In fact, I believe I was infected in the back of my throat. After a week of floconazole, the pain and swallowing that I encountered are much improved.

Just before addressing the thrush, I had a PET scan, which lit up at the BOT (suv 5.4) Oncologist thinks it could be the thrush.

I’m curious, at just less than 3 mos post rads, could it still be healing that’s lighting up? Or does the thrush make most sense? I saw my surgeon, and he scoped me... there was nothing concerning, but the area in question on the tongue is red at the surface. Maybe from the recent thrush? He’s set me up for a biopsy to be sure, in a week from now. I’m super nervous getting ready for the biopsy and what this could all mean.

Thanks so much! I’m very happy to have joined the community!

Jeff

Welcome to OCF, Jeff!

Im sorry you have a need for our services but you are in the very best place for info and support. We have first hand knowledge of many things you have been thru.

At 3 months post rads, you still could have some inflammation, an infection or some other issue making the scan light up. Scans taken too soon after completing rads can and will show false results. Usually 3 months post rads is ok for a first post rads scan, but everybodys different so you just never know plus with the thrush further complicates things.

Thrush is fairly common among OC patients/survivors. After rads, OC patients must maintain impeccable dental care for the rest of their lives with brushing and flossing after every meal besides the usual morning and before bedtime routines. A water pik used on its lowest setting with warm water and a couple capfuls of non-alcohol mouthwash used a few times a day will get things the flossing cant reach. I would suggest asking your doc for peridex mouth rinse prescription or some similar mouth rinse that can replace the mouthwash in the water pik and help keep the thrush away. Nystatin is what many here have used for thrush, sometimes along with oral antibiotics. Being only 3 months post rads, you still have a long way to go with your recovery. Hopefully the thrush will become a less frequent annoyance as time post rads goes by.

You have already been thru ALOT!!! To me, it sounds like your doc is on top of things. Its so much better to do a biopsy just in case than to wait and watch something where you never get a definitive answer. All that would do is cause excessive worrying every single day thinking "what if"????. Ive had many more negative biopsies than positive ones, I see biopsies as a positive step in the right direction of taking care of whatever is behind the need to have a biopsy.

Best wishes with your continued recovery and your upcoming biopsy!!! Hopefully it will be negative and you can continue to focus on your recovery.

Hi Christine,

Thank you SO much for the perspective and thoughtful reply. I like your way of looking at biopsies...definitely helping with the worry! Also, I’ll get out the water pik and get the right solution to stay on top of this. I’ve been good about oral hygiene, but not great...time to focus more on that! I’ve had thrush four times through radiation and post. Fluconazole got it most of the time. Once, I was given nystatin, but it couldn’t get the back of the throat infection. I think that’s when maybe it infected the BOT.

It’s good to hear that, at 3 mos post rads, there still could be inflammation. I still notice a tightness in my throat when swallowing, with very slight discomfort at the BOT. I’m (Interestingly, if I yawn, I feel a little burn on the tongue base. If I mimic a yawn, it’s fine. Just the deep contraction of the yawn that triggers it. Still...hopefully just normal recovery.)

Talk about having been through a lot...you’ve gotten through so much, and it’s so good to hear how great you’re doing. You’re a true inspiration here, and it’s so great of you (and of so many other great people here) to share your experiences and understanding of this awful condition. Thank You!

All the best...

Jeff

Hi Christine,
After some long waiting periods, I had the bast of tongue biopsy done last week, and just had a post operative visit: benign! So relieved! Surgeon thinks the inflammation from radiation is the culprit. But also...there was a titanium clip placed during my tonsillectomy to avoid bleeding in Jan. It had become exposed, and was removed during the biopsy. I suspect the tongue base was getting irritated by this clip, adding to the inflammation.

Thank you again for your calming, thorough note. You and everyone here are truly incredible!

See you soon!
Jeff

You're welcome, Jeff!!!

CONGRATS!!!! I bet you are so relieved Best wishes for your continued recovery to be uneventful and as speedy as possible. You could try asking your doc if its ok to add high protein whey powder to your diet as it would help speed your healing. Protein is what promotes healing so that might help to boost your ability to get well.

Jeff,

Congratulations on a report of no cancer!!!

All kinds of structure changes can occur, which may look may look suspicious, but are negative, and sometimes their not. You sought out your doctors who identified no signs of cancer!

Good luck with everything, including healing!

Sorry, I somehow missed your post!
Thanks so much, Paul! It makes so much sense that these changes can light up a PET! Still, during the surveillance, it’s hard to believe. This is all such a roller coaster, but the comfort and experience and compassion you, Christine, and everyone here supporting and sharing their stories means the world!

Christine, I got the OK to add protein powder...thanks for the tip!

Talk soon, and thank you all again!

All the very best!
Jeff