Hi everyone -

My husband was diagnosed with tonsil cancer on 11/4. Probably HPV but they are reexamining the slides. PET scan shows the cancer is only in his right tonsil and 4 lymph nodes on the same side of his neck. Met with RO and MO prior to PET scan and both said intensive rad with chemo. Treatment bad, prognosis good.

Met with surgeon after PET scan and he says let's start robotic surgery and neck dissection. At the same time. Does that sound right?

Then the surgeon says my husband will probably get less rad and maybe chemo. But looking at this board, it seems like that's a given.

I feel like we've been given so little information and already he's scheduled for surgery in December. They haven't even told us a stage. Is that normal?

My husband's so happy they can get it with surgery instead of intensive radiation and chemotherapy. But I really feel like that's naive - he's still going to have a really tough road to travel, right?

I don't want to bring him down - I want him to stay positive. He's not reading these boards because everyone's different and he doesn't want to dwell on what might be - his feeling is "just deal with it as it happens." I get that (even though it is SO not how I am). But AARGH! I want to meet with the RO, MO and surgeon all over again just to confirm the stage, understand why the neck dissection is the same day, and find out what follow up treatment will be if the tumor is removed (a) with clear margins or (b) without clear margins.

We are going to one of the top cancer centers in the country - the same one that cured him of another cancer 20 years ago. He wants to trust them. I need more information.

Am I being too obsessive?

Hi, and welcome to the family. The first thing you are going to hear is that everyone is different. I am a lot like you, I want to know the answer to everything. But, others are like your husband. We deal with both every day. You can get what you want/need here and so can he.

My cancer is similar to your husbands, left side tonsil, SCC with HPV-16, but no lymph node involvement. For me the tumor board decided radiation only, no chemo. Some here think I should also be getting chemo, but in the end you have to decide if you trust your doctors.

You need to find out more about the planned surgery. I thought they were going to remove all my cancer, but that is a long, time consuming surgery, my doctor said can be up to 11 hours under anesthesia. I was only under for 1 hour, so mine ended up being a tonsilectomy, but not tumor removal all the way to clear margins. That's why I am getting radiation. So, you need to find out exactly what they plan to do for your husband. Be persistent, ask and re-ask until you understand, they work for you, not the other way around. He will be bummed if he thinks surgery is going to be all he needs, only to find out, no it's rads and or chemo too. You will be getting a lot of info so be prepared to write down the answers so you can keep them straight later, or take a pocket tape recorder with you to doctor meetings. Be prepared to ask the docs nicely if you can record the meeting.

Now as for the surgeon saying your husband will get less rads and maybe more chemo; I think I would be more inclined to believe what the RO or MO say about rads and chemo rather than what the surgeon says. We all want to believe it when we hear good news, but then we sometimes get a little wake up call when another specialty says something different; such was my case.

Start reading here both the website and the forum, you have a lot of boning up to do quickly. All the info is here. Get yourself a spiral notebook and as you read, write down questions to ask the docs. Don't try to remember what you want to ask, being with your husband and taking care of his needs will interfere with your remembering what you want to ask.

I could go on and on, but I've given you enough to do already. Others will I'm sure have more to add.

Again, welcome to the family; it's a big one and very good at supporting members. They have helped me a LOT.

Tony

Welcome to OCF. Glad you have found our forum to help you and your husband get thru this. It will be quite the journey so hold onto your hat and get ready!

You will learn so much important info on our site. Dont forget about the main OCF pages for info as well. Read and educate yourself about the disease and how it is treated. This will make you a strong advocate for your husband. Being a caregiver isnt easy, dont worry we will help you get thru this.

Glad to hear you are going to CCCs for treatment. Thats the very best place as they usually have the countrys top doctors and are most experienced with OC patients.

Dont be shy, ask questions and get them to explain everything to you until you understand it. Too often the patient and caregiver forget the doctors work for them and its ok to stand up for yourself. If you feel like you need the doctor to review things again, schedule an appointment and have them explain it until you get it. You both must feel confident and comfortable that the right decisions have been made.

Best wishes!!!

Thank you both. I have a lot to learn. I talked to my husband about it and we are going back to the RO to get more info before his surgery.

And to a dentist who understands the complications. There's so much on this board, the spiral notebook is a great idea.

I have two children and work full time. I'm sure we'll get through this but it feels overwhelming already. Christine, how did you do this without a caregiver?!

Hi Mrs Gman, welcome. My wife and I are running almost exactly 24 month ahead of you, similar dx, similar treatment recommendations. The TORS surgery was key, was a radical tonsilectomy, a fair amount of stuff was removed with the tonsil, but after recovery everything still works ok. We had 2 weeks between tonsil and neck surgery, Xmas was in the middle. The tonsil removal recovery was the tough one, using the pain meds correctly made it bearable. The neck surgery had no pain, some discomfort, a drain for a few extra days, some stiffness , and took a while for the skin nerves to reconnect. We got a few opinions on the radiation recommendation, that served us well. We planned for 6 month absence from work (near worst case outcome), but everything went well, all the test results had best possible news, so was back to work part time after 6 weeks. Full time 3 or 4 weeks later. Hopefully yours will be similar. My advise is to get second opinions, get through the tough stuff (dark side) ASAP, then jump back into your normal routine as soon as the doctor recommends. Don't get caught up in the head games or statistics (numbers are generalized and old), focus on next step and try to enjoy the holidays a little. Prayers work great, we'll send some your way...

Mike - that was exactly what I needed to hear. Thank you so much.

Glad that you are doing well. I definitely would appreciate some prayers.

Mrs. G.,

Yes, everyone is different. I was originally told I would have chemo and rads (my PET was positive for nodes on both sides). After the surgery (mine was 14 hours), and the pathology came back with clear nodes, and clear margins, I was given an option of radiation, as I was right in the middle of whether they would recommend or not. I chose not (after much agonizing), and am being watched closely for any signs of recurrence.

I expect much will depend on the surgery outcome, but make as many appointments as you need to feel comfortable with the process.

I'm an information hog, so before my surgery I researched everything (that's how I found this forum), so make a list of issues/concerns and go through them one by one with the docs, and take notes. Keep one page for each issue. I, being the anal retentive person that I am, wrote my questions in red, the answers in blue and highlighted the follow-up questions (all with dates and who said what). That way I could keep everything straight, and could go back and re-read. I actually had a binder with tabs for each doc, and each appointment had it's own page in chronological order. Yep, I'm a control freak, but I felt very prepared for each step.

This way, you can keep the info, and your hubby can just sit and listen.

Good luck!

These are viable options, and a few here had a tonsillectomy, a neck dissection for tonsil cancer with Chemoradiation or just radiation alone to follow, some do surgery alone, and radiation alone, and many more with just Chemoradiation, with surgery as a last resort. It depends on other factors too, TNM grading, if nodes are involved, the number, where in the chain, negative prognostic factors, histology, tumor size, thickness, depth, where located, other structures involved, if HPV related, doctors experience, patients request, patients medical condition, etc.

Things change from each doctor visit, test, surgery, as more information is obtained from each. I wasn't having more radiation per my doctors fellow after my recent surgery, radiation, my ENT didn't say anything, and two days later my RO says I'm getting more radiation, and chemo, which even before surgery the MO said chemo wasn't an option, so I guess they strategies are subject to change. I had radiation planned one time, CT simulation, another mark made, and two days before starting the radiation oncologist called and decided she did not want to give me more radiation do to my max in an area, brachial plexus nerve, after speaking with the pathologist, ENT. She said once it's given it can't be taken back, and would rather wait.

Be prepared things moving fast, then hurry up and wait, and plans being changed. Good luck with everything, and in your decisions.

Hello, and welcome to OCF, there are tons of good info and support here.

As you can see from my signature line, I have had exactly the same surgery - robotic tonsil removal and selective neck dissection. There were done at the same time. While there was some serious pain afterwards, with the help of pain meds it wasn't too bad. It took me about 10 days to start feeling pretty decent.

In terms or rads and chemo after the surgery, the doctors recommendations will depend on the results of the surgery, such as the margins of he primary tumor, how many nodes are positive, is there in extra capsular leakage from those nodes etc. In my case they recommended rads only.

Oh, and I am another one without a caregiver, so it can be done, not that I would recommend it to anyone.

Best of luck!

Oh am I glad I found this forum. I started on another site but they couldn't give me anywhere near the level of information I've already received here.

Tina77 - you made me laugh out loud. I too am a notebook keeper with different color pens and notebook tabs. I did it for my own cancer scare a while back. Now my husband wants to keep everything for him in a dropbox folder on the internet and it's adding to my stress level! I'm going to go out and get myself a new notebook tomorrow. You are not alone.

PaulB, thank you for confirming that the frequent starts, stops, and turns are "normal." I don't even understand a lot of what's in your signature line, but it's clear you've had a lot of experience with this. I'm not looking forward to what's immediately in front of us, but knowing that you have been through it is really encouraging.

Ambra - bravo to you for doing this solo. Thank you for letting me know what it was like for you. It gives me hope. I pray you get through your treatment quickly and smoothly.

Thank you again, everyone, so much.