I'm trying to make sure I understand things better before we go to Sloan.
The thing I seem to be having the most confusion with right now is the whole nodes thing and how it factors in.

If I understand the very brief explanation from the ENT my husband has node involvement on the same side of the tumor. The nodes range from 1.8-2.6. There may also be a small node on the other side(unclear?). No size given. Didn't show on the MRI but "something" showed on the PET.

As I mentioned earlier he is presuming the nodes are malignant because the biopsy was.

Should we be asking for a needle biopsy(should one have been done already?). Is that the only sure way to dx CA? Does it matter how many nodes are involved? He couldn't tell me how many were involved on the right side.
Does the amount matter? How do they usually figure that out?

I understand that node involvement would (or could) alter the treatment plan but does the amount and size affect the tx plan as well? Just wondering how concerned I should be that he was so vague about it.
That's why I was wondering what people mean when they say things about the nodes in their signature line.

Relax and let Sloan walk you through their explanation of the significance of the node involvement. Doctors really can't tell if the node has cancer or not, so that's why they do so many neck dissections that turn out did not need to be done. All you need to know that the node involvement is not optimal, but hardly fatal as the signatures of many posters proves. Usually the radiation field will include all the nodes on one side and handles the cancer there. It all sounds scary but worrying won't make it any better. We all got through this and your husband should too.
Charm

Thanks Charm, truthfully, it's hard to imagine the word relax will be something I relate to for quite some time. The love of my life and the father of my four children will be experiencing something I absolutely hate to see him go through.

And the thought of what my kids will experience as they have to face this---well relax---I don't think that one will be happening for quite awhile. That said,I'm much calmer.

I figure one of the ways I can help is to understand this as best as I can, to ask questions and grasp info that it might be hard for my husband to focus on. To that end,I was seeking clarity since I felt the info we did get was contradictory or unclear.
I'm usually pretty good at grasping medical terminology but I'm struggling with this aspect about the nodes.

Thought this might be a good place to get the info but I can certainly wait for the appt. to ask my questions.

Hi Susan,

Let me relate my experience.

I had a lump in my neck that was given a needle biopsy that identified cancer.

I then had a PET/CT that found 3 likely cancerous tumors. The one that was already biopsied and two others.

I went to see an ENT, who looked in my mouth and surmised that the primary tumor was my left tonsil.

He subsequently did a modified radical neck dissection on my left neck, removing the 3 tumors identified on the PET/CT and about 40 other lymph nodes. All were biopsied, and it turned out that only the three on the PET/CT were cancerous. And the primary was the left tonsil - the other two were lymph nodes.

However, the cancer had broken out of the two lymph nodes, which impacted my treatment (adding chemo to the radiation).

My RO was concerned about the proximity of the tonsil to the centerline of my mouth, so I got radiation on both sides of my neck - 6-1/2 weeks on the left (cancerous side) and 5-1/2 weeks on the right side.

Anyway, that's my story - except I am now over 3 years post-treatment, and doing great.

Best wishes,

Chris

Susan,

I'm so sorry you and your family have to go through this. It's all so scary and I know you have tons of questions that run through your mind, please find comfort here and feel free to ask away.

I had 2 nodes that were "suspicious" on my scans when first diagnosed. I let them hit me with everything to knock the cancer out including getting a neck dissection. The only way to know if it's CA is to do the biopsy. When they did the surgery, they took 56 nodes out and 10 showed up cancerous at various levels, which my doctors were surprised that so many were found since I didn't have any visible signs of it.

I'm not sure my scenario helped any but I hope someone else is able to answer your questions specifically better than I did.

Let us know how his appt goes.

Susan,
I am so sorry your family has to go though this. I do understand the concern especially with your kids. I have two small children and they are rather resilient. When I was going through treatment there were days I coudl not get out of bed and they would come and lay down next to me and wew ould watch kid shows together. They knew there mommoy still loved them, but was just not feeling good.

I was just thinking this morning about the folks who are raising small children while going through this. What an incredibly difficult thing. But looking through threads I see how resourceful and determined people are.
Our kids are older and I know they will be amazing. I think it is the absolute feeling of helplessness when all I want to do is protect them and my husband that I'm struggling with.

Thanks so much to those of you willing to share their experiences with their nodes. It is helping me to get an idea of what info I should be sure to walk away from the visit from.

And Chris, love the last line of your story!!!