Are they removing the nodes to possibly avoid chemo/rad? If not I still don't see the logic of additional surgery when they will radiate the neck anyway.

HI there... there are a few people here who've had the same surgery. It does sound like they are trying to avoid the possibility of chemo and radiation. HPV related cancer usually responds well to rads and chemo, but the fallout is such that if it can be avoided it should.
The neck dissection is actually not too bad in terms of pain post op. Usually it's numbing, tightness and uncomfortable because you have drains - though it's scary looking. You will have swelling and at some point need some physio for your shoulder - depending on how many nodes they take out, but of all of the things I went through with my dx - the neck dissection was the least bothersome. They may give you an NG tube to feed you as I think the tonsils will hurt more than the neck dissection.

Tors is also good because I believe it minimizes the amount of damage and tissue they remove. Hopefully this will be it for you. But if you do have to go through rads and chemo there will likely be a 4-6 week time period where you will have time to heal and hopefully eat some of your favorite fatty foods. That's the time to really bulk up if you can. Try to read up on your dx - without scaring yourself.

worst case scenario - if you do have to go through rads and chemo they will likely put a feeding tube in to help with nutrition, and you must remember - eating and drinking will make it easier for recovery.

best of luck... and hugs.

Hello again,
And thanks again for all the info and support. Apologies for the typos/missed words in my previous post: my English is pretty good (or at least I would like to believe so ) but my typing is not.

David, I believe the main reason they are removing the lymph nodes is that it would be the only way to tell if the cancer has spread there, as PET was not clear. When discussing possible radiation followup, it was also mentioned that the size and the location of the tumor was such that the radiation dose and extent would be much greater if it were not to be removed.

T, that is reassuring to hear.

I am off to my pre-op tests. Thanks again everyone!

Ambra, nothing here but good wishes for a successful outcome. You sound like you have your head in a good place, despite the stated and perfectly natural fear and anxiety of the unknown.

When that creeps into your awareness, tell yourself that focusing on that is counterproductive and does not help anything (which is the truth.) Then, choose a subject with pleasant associations, and focus on what is good about that.

It's a trick, but it works.

Good luck!

I'm just not one that believes in exploratory or unnecessary surgery. What about a FNA to suspected nodes? I had 2 confirmed nodes and Moffitt 7 years ago and without the HPV confirmation told me they wouldn't do a ND because the radiation was going to kill the cancer and IF it didn't they could always do the ND post Tx.

Thanks again for all the comments everyone!

The second opinion on the PET images just got filed into my charts and of course I read it and am very down now. It claims spreading to an adjacent lymph node, 4.5 cm in size! That is almost double the size of the primary and put the node into N2a category and the cancer into stage 4a.
So, yeah, 4 different radiologist reports, two on both PET and CT scans by the original imaging facility claiming no lymph spread, and then the two from the JH radiologists, the CT one claims nothing has spread to the nodes and the PET one says what I have just written above. So I am both terrified and annoyed - I am a scientist who does something somewhat similar for living ( I take MRIs of rat brains)and can not understand this huge discrepancy in opinions -a 4.5 cm is not something small exactly for either people to miss or see when it does not exist.

My surgery is scheduled for tomorrow very early in the morning and I am so hoping it goes well enough. I was warned about possible damage to the swallowing muscle so if that happens they will be putting me on the feeding tube immediately.

I don't want to sound like a broken record, but I am so frightened that I don't even know how am I going to finish everything I need to do today.

I will probably not be able to write more till I have somewhat recovered from the surgery.

Thanks again for all the kind words!

Your reaction is normal, and just shows a concern for the outcome of your treatment, and fear of the unknown. The lymph nodes are often filled with fluids, and is not a true measure of the tumor itself within. When the biopsies are done, they can tell the true size, and re-stage the disease. There are other factors as important like node ECE, PNI. It's not uncommon with HPV to have more than one nodal involvement, and that are bigger than the primary due to the richness in blood supply, and nutrients in that area.

Good luck with surgery tomorrow.

Good luck to you Ambra, wishing the best possible outcome. My two cents is that I'm about the same size as you, and never eat a lot. After I found out I was going to need radiation, I put a PEG in early! It made all the difference in the world. I just could not eat, and was wasting away, got down til 102. That was it for me! Now I'm a plump 110 and in my second week of radiation. Everything is scary, but there are a ton of us here to listen, encourage, and educate you. (I'm not one of the educators, but I can be your encourager and help comfort you in your down times)
Best wishes til next time...

Good luck! I have faith you come out ok! Hugs!

Hello everyone,
Here I am back again. The surgery went decent I believe, the doctors were pleased with the outcome. They said the margins were clear. I was released on Sunday and have been home since. The pain can be pretty bad at times, especially the ear pain, but I haven't found a good way of dealing with it yet.
I got the biopsy results this morning, and the cancer has spread to one lymph node (out of 23 they took out), so looks to be T2N1. I will definitely need radiation. I am yet to meet with the radiation oncologist to learn the details, but was previously told it would be for 6weeks. I also need to get a serious amount of dental work finished before I even start with the radiation.
I was curious to hear from those who have had similar how early post surgery can I start doing dental work? And of course, about the radiation treatment, in particular worst side effects/ I can imagine those are highly individual, or not?

Thanks you very much!