Has anyone ever had a case of tonsillitis after oral cancer surgery? My cancer was HPV-, no risk factors. I've had a unilateral sore throat since 5/22 with tonsillar swelling extending to my uvula (all of my surgical side). I wasn't ill in any other way, but just a very bad sore throat and change in speech, similar to how I sounded just after my partial glossectomy.

I saw my PCP and she gave me 5 days of tapered prednisone, as well as 10 days of Augmentin. I was a good doobie and took all of my meds. I was also taking 800mg of ibuprofen 3 times daily. She told me that if I wasn't significantly better within 24 hours of taking the prednisone, that I would have to go the the ED to rule of a peritonsillar abscess. I did that and do not have an abscess per the ENT at the ED at Mass Eye & Ear, where my SO is located. My throat culture was negative for strep, so they said that the tonsillitis was viral, but caused a secondary ear infection.

My tonsil edema went down about 70%, but it has been the same size since roughly May 27th. I saw my surgical oncologist on June 1st for a routine follow up. He evaluated me and said that the tonsil is still enlarged, but it can take 4-6 weeks for the inflammation to go down. I tried to convey to him how much this hurts, despite taking so much ibuprofen...my entire surgical area was painful...tongue, jaw, ear (even though infection was gone), and throat. He prescribed Tylenol #3 for me. Honestly, I've been taking 2 tabs, 1-2 times daily IN ADDITION TO 800 MG IBUPROFEN to control the pain.

I called his office last week and spoke with his nurse, whom knows me very well. He said that if I'm not better by next week, to come in and see him. Well, the week's almost over and I haven't gone to see him, so I will do so next week.

Here's the kicker...the monkey wrench in the works. I had a routine CT in early April. I have some palpable enlarged nodes which have been stable. When he called to give me the results, he said that the CT was fine and the nodes were consistent with my clinical exam. So, I go back for my routine follow up on June 1st and I find out that I was supposedly supposed to have a repeat CT. I am crazy OCD about my cancer follow ups and have a 5-subject notebook where I make notes on EVERY visit & phone call. No one told me I needed a repeat CT. Of course, I'm talking to the secretary and I nearly shat myself right there in front of her! I waited to see him, trying hard not to go into a full-blown anxiety attack. Finally, he comes in and says that he ordered the repeat scan in order to set my mind at ease. He said that I have a 9mm node that the radiologists tend to recommend "very close observation or biopsy". I have been through this last August, but the nodes were 5 & 6 mm and in the very same spot. They were excised and benign.

I know this is a long story and I'm sorry for it being so, but I am starting to second guess myself given this situation of tonsillitis symptoms and the enlarged node. I told him that if he feels comfortable waiting another 8-10 weeks for a repeat CT, then I trust his judgement. He is a well-renowned surgeon and is know for his close follow ups with his patients and conservative nature of treatment.

Is tonsillar cancer HPV-related? I've never had tonsillitis in my life. It's just so close to my surgical site that it's making everything hurt, even my tongue, and with the enlarged node...I am getting all worked up. I know I have to give him a call and see him next week, but I guess when it comes down to it, I want to know...

1. Has anyone had tonsillitis either before or after OC?

2. Is a 9 mm node common and what is the criteria for possible malignancy?

3. In your opinion/experience, would you wait until August 10th for a repeat CT. My SO said that at this point in my care, he wouldn't normally order a repeat CT for 6-9 months from my one in April, then once a year thereafter.

I know I am making myself crazy and I know you are not doctors. I am just trying to calm myself down and get some thoughts/experiences from you all.

Thanks so much for putting up with this craziness in my head!

xo,
Kerri

Kerri,

I'm sorry your going through this, my opinion I wouldn't wait for anything. I don't know how your CT scan was done, my surgeon does one with contrast and one without, not sure what they both mean.

Yes, I also would like to know what happened to the repeat CT Scan. One of the recommendations from the radiologist was close observation or biopsy, I would go for the biopsy seeing it's 9mm. I'm not in the medical field, but we do know our body and to put your mind at ease I'd request a biopsy.

Let your Dr. know after all you've been through you don't want to wait. We all know about wait and see!!!

Take care keep us posted..
Connie

Kerri, please stay calm! It could be scar tissue or anything else not cancerous. If it were me, I would ask the CT be done now so you will know what it is your dealing with and if you need a biopsy. Best wishes!!!!

SCC of the tonsil(s) can be HPV related.

A FNA is an easy way to (perhaps) determine if the node contains cancer cells.

No I haven't heard of anyone on this site that has developed tonsillitis post OC.

Keep us posted.

I'm going to mimick Christine have the scan done have them biopsy the node too, waiting will make you neurotic. Better to ease your mind. hugs - hope its nothing!

Thanks, everyone! I called and made an appointment for next Friday. I am waiting to hear if he wants me to have a repeat scan just before the appointment. I will surely keep you all posted. I am also going to put in a request for some stronger pain meds, as I don't think taking so much Advil, plus having to piggyback the Tylenol #3 is good in effectively (barely) managing my pain. I don't want to seem like a med-seeker, because I am not, but this current plan is not working.

I'm trying to stay calm. I am doing okay for the most part. I sometimes just get a little crazy.

I would be lost without you wonderful people! xoxo, Kerri

Hugs and here's hoping everything is okay.

At 38 years old, I have to have my tonsils removed. You know when one of the best
H & N surgical oncologists/ENTs says that "Tonsillectomies suck.", you're in for some pain. Although I am up for another painful surgery, I am relieved that I'm not dealing with cancer. If this turns out to be cancer (highly unlikely), that would mean that I would have hit the lottery in the world of bad luck (2 different types of oral cancers, both without risk factors)! I'm just of the opinion "Git 'er done!". That way, I won't have recurring infections, pain, cancer recurrence scares, all of which would lead to the cascade of events...more scans...more stress/anxiety, more unnecessary biopsies, etc.

It looks like the date is going to be August 6th. He wanted to do it mid-July, but he will be on vacation for a couple of weeks after my surgery and he wanted to be around in case of complications. I'm just hoping to get this done, recover, and have some smooth sailing for a while.

Good luck. I was told by my ENT at Moffitt that he was going to take my tonsild out while trying to find my primary but when I woke my wife said he found the tumor at the BOT, the first place he went to and he stopped looking.

Why are they taking the tonsils anyway?

I keep getting infections and they aren't going away totally with antibiotics. I am allergic to lots of antibiotics and have limited treatment options. Also, the infections are causing lots of pain where my surgery was and a couple of my lymph nodes are fluctuating in size. I had a SND and the last 2 scans, the neuroradiologists get concerned due to the growing size of this one particular node, even though it doesn't meet the size criteria for suspected malignancy, just that there has been a CHANGE from previous scans. In order to rule out malignancy, they would have to keep doing biopsies, not to mention that these changes have been stressing me out and the infections are very painful.