This morning I learned that my CT scan w/contrast found mass like enlargement of right palatine and lingual tonsil w/involvement of the glosso tonsillar sulcus. The tonsil is 4.1 cm CC x 2.1 cm transverse x 2.4 cm AP. It also defined the big lump in my neck as a 2.5 cm "markedly enlarged" jugulodigastric lymph node. To my dismay, it also found several other more mildly enlarged level 2 and 3 lymph nodes, all on the same side.

The report concludes that the "findings are suggestive of a malignancy of the right palatine tonsil with metastatic lymphadenopathy."

This means the base of my tongue appears to be involved, correct? I'm confused about how the tumor extends from my tonsil to my tongue area...does it grow down my cheek/the side of my mouth?

Does/has anyone on the forum had a similar set of issues?

My ENT has proposed a tonsillectomy in order to biopsy. When we left his office, I immediately called the office of the top head and neck cancer doc at UW Madison, an NIH center of excellence for cancer care about an hour and a half from my home. To my amazement, I was offered an appointment tomorrow morning. That was possible only because I already had in hand a copy of the radiology report AND image CD from my ENT, thanks to advice on this forum to ALWAYS get your primary documents.

If you were me, what questions would you ask tomorrow morning???

Thanks for any and all ideas, perspectives and most definitely prayers,

Lynn

Sorry for the clinical diagnosis. It's the tonsil, there are 6 sets. The lingual tonsil, is connected on top the BOT, and could extend there, the Palentine tonsil is off to the side lateral pharyngeal wall. Cancer can go anywhere, but usually follows a certain path, and for the oropharynx it's usually to level ll to the lymph chain, and move on down, to level lll, IV, rarely V, but there can be skip metastases. Even if the CT scan shows all this involvement, it could be lesser due inflammation in some areas. The tonsillectomy ot biopsy of that, other areas is the only way to prove cancer. Even the lymph nodes can be false postive. It's very common for oropharyngeal cancer to be found in the late stage, and would say the majority here were, especially with HPV, which mainly involves the lingual, patenting, and bot, and will be tested for that. The current treatment for HPV is usually Chemoradiation, in the advanced stage, although some had tonsillectomy, neck dissection, which last is controversial. They will stage you from the biopsy, and TNM grading, and come up with a treatmnt plan. I would think they would do a PET/CT, to show any other involvement, extent, before doing surgery.

Good luck with the 2nd opinion.

Thank you Paul, I really appreciate the background and perspective. My tonsil is so enlarged that it touches my tongue and blocks almost half my airway, nearly touching my uvula. Would chemoradiation return it to normal size?

So much to learn, I'm grateful for you and all the others who share their experience here --

Lynn

Lynn, you are right, there is too much info to learn when just starting out. The main pages of OCF are full of articles and info that will help you learn about oral cancer and everything that goes along with it.

Have you been diagnosed yet? Im really unsure where you are in being diagnosed and treated. I dont have time to go thru all of your posts to figure it out. Please add a signature, it will greatly help us so we can help you.

Radiation weather with or without chemo can help to shrink a tumor. If you are at a CCC the team of specialists will go by certain standards and treatment guidelines to make you well. Surgery may be done prior to rads. Whatever is decided its still always a good plan to seek out a second opinion. You want to make certain you have a top of the line medical team who will treat you to the very best of their abilities.

Good luck!!!

I also had a tumor that was connected between my tonsil and BOT. My tonsil was slightly non symmetrical but rads and chemo resolved it. My docs said it happens from time to time as the tonsil and bot are quite close to eachother at the back of the mouth.

Good luck.

Lynn,

I'm sure you are in good hands and it does sound like SCC involving the nodes with a Primary in the tonsils. Let's hope it's HPV+.

HI there... Good luck on the biopsy - You are right the CT does sound - not so good. However on the up note, as you probably already know most tonsillar cancer is HPV + this is a good thing as it readily responds to rads and chemo. If he removes your tonsil most of the mass will be gone. He may also go on to remove the nodes - that is a discussion you may have with him. That would mean the got the bulk of the cancer and rads and chemo are the housekeepers. A lot of people here will tell you the neck dissection may be unnecessary as the rads and chemo should get rid of it, but whether you decide to go for it is a personal decision. Anyway that was all very cart in front of the horse. Have the tonsil removed, and see what the biopsy says. Then move on. Your priority should be the biopsy though. hugs

Mamac, best wishes to you. Know this: You are lightyears ahead in your treatment plan due to your search skills and support from some great folks here. Bless you!