Hello everyone, I have been lurking on here for the last 6 weeks and just wanted to say what an amazing place this is. The genuine warmth and compassion is very real. As we all know that even with a strong family and friend support group; cancer can be a frightening and lonely place. To be able to share this journey with others wearing the same shoes is a blessing. I have noticed that when people first come on they are absolutely freaked out even if they have not been diagnosed. To be able to speak with the experienced people on this forum (for free)and get information that can save lives is awesome. My story: I was shaving in March of 2010 when I noticed a golf ball directly under my left ear. After it didnt go away for a about a week I went to the doc and he ordered a CT scan. I thought I had Hodgkins Lymphoma but it turned out to be Left tonsil cancer mets to one node. surgery, uneventful. 9 weeks of Cisplatin along with 35 rads was tough, but doable. went back to work in December of 2010 with the new promise of taking better care of myself. I started walking and working out, my thought was if this ever came back I wanted to be the best shape to fight. I had 7 clear PETS between 2010 and this past september. my birthday was sept. 10th. I had a great day in the gym and a nice dinner. I felt great. I awoke the next day barely able to swallow. went to work anyway thinking it would get better. it didnt. It got worse. On the third day I couldnt even drink the tiniest sip of water and drove myself to the ER.They gave my antibiotics and oral steroids and did a CT scan. The Ct scan said unfavorable results do to enlarged lymph nodes and wall thickening in my neck and throat.The antibiotics and/or oral stimulants worked and I was back normal within 3 days. saw the ENT afetr a couple of days where he scoped me. He said everything looks good, nothing bad. next day saw the MO where he ordered a PET. I was due anyway. It was not good, I had 10 nodes in my neck/chest area that are enlarged and SUV's in the 3-5 range. Mo thinks that it could be reaction to whatever caused my throat to close. at the time we were still waiting on cultures to come back. He said to repeat Pet in 3 months. Today, i had an appoint. with the MO. I found out that The culture tested positive for strep associated with pneumonia and that I am HPV-16 positve.(mini yay)I have zero signs or symptoms of any kind as I anxiously await the next PET in 6 weeks.

Welcome to OCF! Its always nice to have survivors join our group. You did a great job on your signature, thanks!

The PET is known for false positives. This is especially true when someone has an infection and swelling. Hopefully yours lit up as a result of the strep. Try your best to go about your life and not sit around fretting over the next 6 weeks. It wont change the test results and will only make you miserable.

Hi Tom, and welcome! This forum is truly amazing.

I am sorry to hear about this most recent development, but as Christine pointed out, hopefully it is just a throat infection.

Good luck!

Hello Tom:

Yes, another welcome, but this one from someone who is way behind you in the treatment process (first rads this Monday).

Your story and your courage to fight are what help us newly diagnosed members. It gives us something to look forward too and to focus on at the end of the tunnel.

Truly Tom, welcome to a new family.

Tony

Hi Tom,
I agree with Christine. The uptake could just be inflammation from the infection. Our first PET showed an uptake, can't remember the number and everyone was freaking out. An MRI determined it was inflammation. A year later another PET showed an uptake of 12 in the hard palate. Kevin had had a sore up there but it was healed as far as we could see from the outside. They decided it was inflammation. The beginning of October we had a PET and it was completely clear. All this to say a strep infection and pneumonia could certainly be the culprits.
Please keep in touch with us.
Kathy

Welcome Tom! Thanks for sharing your story. I am only 8 weeks out from surgery but feeling great. Sorry to hear about your PET, but as others have pointed out....you had strep! Inflammation lights them up like a Christmas tree. Fingers and goes crossed that your next one is clear.

This family is wonderful. I check posts about 3 times a day. This group gave me so much information before my surgery that I felt confident and strong going into the procedure. I just can't stay away. I want to be here to welcome and support those who come here for the first time as afraid as I was.

Your survivor story is great to read. Please keep us posted on your scan. Hang out and enjoy this group.

Welcome. You have all the good signs for a continued clear PET after three years, 7 clear scans, furthering that the cancer was HPV positive. You recent illnesses is good reason for the CT scans to show activity, but it's also interpreted by the doctor, not just what highlights, to consider other causes. Good luck.

thank you everybody for the kind words and support. I would like to be more involved as I think this is a wonderful family of beutiful people.

Tom, there is a walk in the Scottsdale area that could use more volunteers. Let me know if you are live anywhere near there. Im sure they would love to have any help you can give.

Thanks!!!

Hi Tom, your diagnosis was very similar to my brother's and he was roughly your age as well. From anything I've read on the blog it is very possible the scan is showing up infammation. Good luck with it all.

Hi Tom, I also agree on the false positive issue - my PET was positive for nodes on both sides (like a Christmas tree), yet all nodes came back negative.

I must say I am a bit leery now relying on the PET.