Well, made it through the ordeal of the 1st appointment at the CCC. They had a couple of emergencies, so everything was running really late -- arrived at 10:00 AM for a 10:30 appointment -- saw the doctor at 1:00, left at 3:15. Whew . . .

They scoped my tongue and throat, palpated my lymph node, reviewed CT Scan, Biopsy, etc. Primary is 2.1 cm on the right tongue base, just touching the midline. Lymph node is 3 cm today (really blew up after biopsy last week), so doc says technically I am a Stage IV, due to the size of the lymph node, even though the primary is a T2.

Friday I go for PET/CT combination and general medical evaluation. On 4/19, I will have bilateral neck dissection. He intends to preserve everything he can, but will be "aggressive" in terms of removing lymphatic tissue. Even though there is no CT evidence for lymphadenopathy on the left, he wants to play it safe. The dissection will be less extensive on the left He says that doing an early dissection enables a lower dose and more focused Rad/Chemo protocol, which reduces side effects without reducing effectiveness of treatment. He said no 100% guarantees, but the intent and expectation is to cure.

So, bottom line is I feel as good as can be expected at this stage of the proceedings. I would appreciate any input or comments on what transpired today.

Jeff

Jeff, my first reaction to "the what transpired today" question was thinking that the time you spent in the waiting room was about normal :rolleyes: The rest sounds like pretty standard protocol until the rest of your test results are in. Keep feeling positive and looking forward. Amy in the Oz

Hello Jeff, my dx was similar as you can see at the bottom of my post here. My primary was found on my left tonsil, after my tonsillectomy. The pet scan confirmed the tonsil they just recieved the pet scan results the same afternoon after the surgery. It was fairly small but the 2 lymph nodes that they removed earlier were quite large and one that is still in there was as large or larger than the first two. I am 2 weeks post rad/chemo and meet with my surgeon this Friday to discuss the neck dissection. I'm not sure if the order of dissection to rad/chemo or vice versa is more effective. It seems like there are different opinions on this. My order of treatment was left with fewer options because of the time that passed finding the lymph node because it didn't show up in the fine needle aspiration. Then I had the node removed, found the cancer, went back in 2 days later because of alot of swelling, found no problems so the ENT removed the second node that was also cancerous. Due to the surgeries before the scans, it made the scans more difficult to read. I found the sewlling in Oct., and found the first cancerous node on 12-26 and finally started treatment on 02-06. i'm awaiting the post treatment scans and the surgery if they still find it necessary. Hang in there Jeff, read up and ask all the questions you need to. The thing that I done because I'm not very good at doing what I believe is the dr.s, nurses, and specialists jobs was find a cancer treatment center that I found had considerable experience with H&N cancer and that worked as a team. Then I did my part of doing my best to stay healthy and spent time on these forums to see if my treatments were going like the majority of everyone elses. So far it seems to be working for me. Others may feel I was way to passive about asking questions ect. I just found that every question had a = and - opinion as well as a + and - statistic. It all came down to praying and going with what I felt in my heart and the best i could do with all the confusing info. I depended a great deal on the combined experience of the members of this forum. I can unerstand what they are saying. Good Luck, Lee

Hi Jeff,
Jack had his surgery first too and then the radiation/chemo. The surgery was the least difficult treatment to go through.

Are you also getting a PEG tube inserted? It really is a good precaution that will help you maintain adequate nutrition, hydration, and an open access route for medication during the radiaiton.

The good news is that all this is temporary and you will get through it. Don't try to tough it out, it's not necessary. There is better living through chemistry these days. I'm sure you're relieved to have a plan in place.

Regards JoAnne

Hi Jeff,

You must be somewhat relieved to have a course of action and anxious to get your PET/CT done.
My husband also had his neck dissection prior to therapy, but only one side. There is a very small LN on the left that they think is probably malignant, but they felt confident the radiation and chemo would take care of that. I was a little apprehensive at first to leave that in, but I have to have faith in what they think is the best approach.
I think being comfortable with the decisions you make along the way helps to get through this. Be sure you stay on top of any symptoms with your doctors, no matter how small you may think they are.
My husband really didn't have a lot of pain with the neck dissection. They did removed a big muscle and now he has a droopy shoulder and it is thin on that side of his neck. Once he gets through therapy and is feeling better, we can work on strengthening that shoulder area. He did have some nerve damage and talks sort of out of the side of his mouth on one side. This was mentioned to us as a possible result from the surgery. Since we don't live on the same island as his surgeon, we haven't seen him since my husband began therapy. I am anxious to see him to see if he thinks that this nerve problem may be temporary. I am sure he told us but I can't recall right now. I guess I thought that would be the least of his problems. I just wanted his surgery to go well and get those nodes out. His surgery for one side took about 4 1/2 hours.
I'm sure out paths will cross on here again.
This forum really helped me prepare and I am thankful for it everyday.
Vicki

Hi Vicki, how is your husband doing? I'm sorry I missed some of your posts, did he have cancer in his lymph nodes?
On another note, it must be awesome to live in Hawaii......God Bless, Carol

Thanks for all of the input. I am guardedly optimistic, and the team at the CCC really seems to know their stuff.

The theory expressed to me for doing an aggressive bilateral neck dissection at the outset is that, assuming that most of the nodes are negative, and no huge surprises on PET (i.e. distant metastases) is that they can then target the radiation on the primary and immediately adjacent structures, reducing morbidity and side effects. They also do not "use up" the possibility for radiation tx of the neck down the line should something else pop up.

What I can't understand is why my ENT did not catch this sooner. After a CT scan showed a suspicious area in 2004, he did a PET, which was characterized as negative at the time. I have returned annually since then,having a flexible nasopharyngoscopy on each visit, with the most recent being last June. My cancer is well-differentiated, so how could it have gone from nothing to Stage IV in 9 months? Troubling . . .

Jeff:

Which is why it is so important to get more than one opinion. My husband originally went to an ENT surgeon with our community hospital. I did not like his attitude from the start but he did send him for a biopsy. Well, they did not do a good biopsy (in my mind) and did not get tissue to evaluate. At the time we were involved with my daughter's illness and the lump on his neck went down. We figured it was some sort of cyst as all they got from the first biopsy was fluid. After a while, the lump came back on his neck. We then proceeded to see another ENT surgeon whom we liked much better than the first. Another biopsy was done & this is when they discovered it was SCC. This surgeon then did a radical neck dissection & removed something like 40 lymp nodes of which 2 were cancerous.

What I'm trying to get across here is that if one does not feel confident with a doctor, it is so important to get another opinion. My daughter had a very rare tumor and you wouldn't believe how many opinions we had to get in order to find someone to help her.

Linda K. (caregiver of Ken K.)