Hi,
I had been experiencing fluid trapped in my ear for a while. It was bothering me so terribly one night, that I tried to feel in throat to see if I could feel something blocking it. That is when I felt a reall hard mass, about 3/4 inch wide, at least an inch long, inside of my tonsil. The last thing I thought of at that point was cancer.

Nevertheless, I made an appointment for my ear and tonsil. I was referred to an ENT. I had a CT scan after that, which showed nothing but an enlarged tonsil. So, it's not a calcification and there are no swollen lymph nodes. They've been watching me carefully. Meanwhile, I read all the horror on the internet.
So, last appointment, he finally brings up Squamous Cell Carcinoma. I have smoked very little in my life and am a 33 year old female, btw. I'm healthy. So far, there are no other symptoms other than the huge, scary-feeling mass in my tonsil that is not a calcification and an ear that won't drain. I have read that 75% of these masses are malignant. My doctor says I have about a 10-20% chance of it being malignant. And, with it probably being the HPV-related malignancy, there is a 90% cure rate. He seems to put all of his eggs into the 'because of the lack of risk factors, my likelihood of it being cancer is very marginal' basket. Never mind the fact that I have a very suspicious mass in my tonsil.
So, I have opted for a tonsillectomy. He wants to wait until September-October. I am preparing myself for a cancer diagnosis. I have planned to refuse radiation, unless it starts to spread.

Any thoughts on all of this? I'm terrified. This is something that I never anticipate happening. I guess know does. I know that I haven't been 'diagnosed' yet. But, I don't know what else it could be.

Hi Tarayvonne, and welcome to the forum. Our situations are similar. I have an enlarged tonsil too, about the same size. I get my CAT scan results tomorrow and will then proceed to biopsy.

One difference is that I also have a very swollen lymph node in the adjoining neck area. From what I've read, it's good news if none of your lymph nodes are involved. So that's in your favor!

The best advice I've gotten (and I got it in this forum) is to make sure your doc has great qualifications. His/her experience with oral cancer is more important than personality or convenient location. You want a doc who deals with oral cancers everyday, as the dominant focus of his/her practice. Most oral cancer scares are false alarms, but you want a doc who makes that call accurately and quickly.

Why does your doc want to delay tonsillectomy and biopsy? I would find that so hard, my anxiety would just plain explode!

I will be thinking of you, keep us posted --

Lynn

The tonsil can be swollen for a number of reasons, cancer could be one, and so can an infection. HPV does not present the same progression of cancer as tobacco related does. In fact, usually the first sign with HPV HNSCC is a swollen cervical lymph node, even before the primary has obvious signs, due to the high nutrients, blood in the neck, and reason why there are sometimes an unknown primary, around 5%, which 90% percent if the time the primary is in the oropharynx. Two ENT's could not see anything on the flex scope, palpitation in the back of my throat, except my neck lymph node, in level II, which is usually the first drainage area for the oropharynx, but there can be skip metastases.

After that I had a non infectious enlarged lymph show on my CT, then went for a FBAB, which confirmed metatastic cancer SCC in the node, then a PET/CT, and then a pandendoscopy to check the upper aerodigestive tract, and cancer was confirmed in the two tonsils from the biopsy. Also, HPV HNC usually does not involve other structures like tobacco related does, so some find no reason to do the largynoscopy, if HPV. My course of treatment was Induction chemo, as neo adjunct therapy, to be followed by 7 weeks Chemoradiation, and did not have a tonsillectomy or other surgery. For some reason, I never was or found out my HPV status, due to unforeseen circumstances, but back in 2009 treatments were the same, and not too much info out there with HPV, stats, as there is now.

There are a number of ways to approach, but I would like to have a PET first to see the size of the tumor, any other involvement, metastases, then a pandendoscopy, with biopsy, with HPV testing, pathology. If confirmed cancerous, then possibly removal after consulting with others, that's me, and I'm no doctor. Others had a tonsillectomy first, maybe with a larynoscope, a frozen section biopsy to confirm cancer before proceeding with surgery.

September/Oct is too far off, in my opinion, it could be aggressive, and if cancerous you're talking a month or two later to start treatment. Also, its good to get is a 2nd opinion. Sometimes later down the line some wish they did, I'm one of them, even though I had good doctors. Opinions, treatments and outcome can differ. Get copies for every test, even blood, you have for future reference, even if its positive or not, and just good info to know either way, and if you go for any consultation, it's asked for.

The only thing that can confirm cancer is a biopsy. The only curative treatment is surgery and radiation or chemoradiation, which chemo is added as a radiosensitizer to make radiation work better, reduce tumor size, but is not curative alone. I don't know about 75% chance of a swollen tonsil being malignant nor 20%. I believe the chance of HPV-16 exposure to has a 1% chance of turning cancerous in the population.

P.S. Stay off Dr Google Read the info supplied in the blogs, search, and the many links at the opening page.

Good luck.

Hello, I think you are jumping ahead.
You need to have the tonsillectomy and get the pathology results of that.
If I read your post correctly a CT did not show a tumour. So, take a deep breath and try and relax.
I agree with Paul. I would not wait to have the tonsillectomy. Push to have this done now. Then you can either relax, or go into fight mode.
This could be a number of things and you must get a biopsy of the tissue, or the tonsillectomy in your case, to know what you may be dealing with.
Thinking of you. Keep us posted,
Tammy

Thank you for the responses. This is scary business. First let me say, GOOD LUCK and STAY STRONG to both of you!

The tonsil is enlarged, per the CT scan. But, in addition there is a nodule/tumor inside. That is the part that is at least an inch long, 3/4 inch wide. It feels hard like a bone, and is shaped differently than the tonsil. It protrudes and is scary and large. The doctor and I thought it was a calcification, until it didn't show on the scan. It feels deeply rooted, and won't move when pushed. It also narrows a bit towards the end of it. It doesn't hurt at all, though. I don't know how long it has been there. I would definitely say less than a year maybe?

I think the doctor's strategy is waiting for lymph node development. I don't like that! Every doctor that feels of it is taken aback. There is definitely something not normal. They do stick a tube down my nose into my throat every time I go in. Other than that, they seem fairly calm.

This is the Veteran's Affairs Hospital. They are generally very attentive and overly 'thorough.' This doctor is about to retire. I'm wondering if I should push the issue. If it is precancerous or very early, cancerous, possibly I could be saved from as much treatment.

I'm going to call them tomorrow and see if I can get a PET scan scheduled. It makes sense to me. What they are doing doesn't make sense, really. Thank you, thank you!

Will a tumor always show up on a CT scan?

I don't know if tumors always show up, good question.

Can you seek a 2nd opinion, ideally from a doc whose focus is head & neck cancer?

A tumor will show up on a ct scan with contrast most of the time. I am not in favor of a lot of ct scans and I am allergic to the dye. I would suggest you get to a comprehensive cancer center for another opinion. Everything you are saying and feeling says do something now. I think you should listen.

Definitely get another opinion - and soon. Take care

Sometimes inflammation, necrosis, fibrosis is difficult to differentiate on the scans from neoplasms. and could be a combination too. The only thing I can think of is the hyoid bone, which is attached to muscle, but this should have shown on the CT