Hello, I am the very supportive daugter of a 49 year old man who found a lump in his neck on May 6th. After being told by 1 dentist, 1 primary MD, 1 emergency doc and 1 ENT that is was "nothing"-George Adams at the University of Minnesota looked in his throat and gave us the news that he has tonsil CA. THANKFULLY, he has started Cisplatin this week and has Fourth Radiation (bilateral) TODAY.
Tell me this--There is 1 necrotic lymph node. MD Adams said that the staging of this type of CA is off anyway because the nodes tend to be cystic. What do you all think of that? All the CT's and MRI's are clean-no other nodes apparently. They did a needle biopsy of the node and they didn't get any malignant cells out--I feel that the staging is important, but this guru doesn't seem to give us a true stage. The tumor is not bigger than 3 cm--there were no lesions below or around the tonsil.
After all the treatment he is down for the modified neck dissection. How do you all feel about that surgery considering the controversy?
I am scared, sad, hopeful, distraught-I saw Brian Hill on the Lance Armstrong website-he is inspiring me-My dad is my only parent and the most important person in my life-Bless all of you-you are all in my prayers!!

God bless you Shawna for taking such a proactive roll in your Father's health.

I am sorry that this has touched both of your lives, but the good news is, you can get beyond the negatives.

1st of all, I am not a Dr, so you can't take what I say too seriously...Always confirm what you hear from others and read on the internet with a licensed professional.

It sounds to me that 1 involved node, and less than 3 cm would put your Dad around Stage III/IV, but there are several others on this site that know the math much better than I do.

I have three nodes positive, and up to 4cm on the tonsil (also presented, coincidentally, as a lump on my neck in early May).

My Stage is IV, and that may be because there isn't a Stage five :-0 Who knows..?

But, what's more important than Staging is that you have started treatment with a good prognosis.

It's good news that no other metastisis is showing on the scans and that he is already on chemo and radiation.

At this point, I would concentrate on managing and limiting the side effects from the 2 treatment arms. There is a WEALTH of information on this site, and you can spend hours and hours gathering it here.

Also, don't put much weight in the Fine Needle biopsy (FNA), they are notoriously inconclusive, and it doesn't really mean anything one way or the other.

As far as the surgery question, that is a hot topic and there is no easy answer. The only advice I can give you is the following:

1) If done well, by a very competent surgeon, the MRND is NOT as big a deal as it seems; I just had mine 3 weeks ago and am dealing w/minor side effects, and cosmetic changes that are well worth the potential life saving benefit.

2) Consider a 2nd, or 3rd opinion, possibly at a major CCC (comprehensive cancer center) (which Univ of Minn might be, but I don't recall seeing it on the list). These additional opinions won't solve your challenge of making the MRND decision, but they will help you balance all the information, and make an informed choice.

Your father is very lucky to have you as an advocate by his side, and again I'm sorry this has entered your life...Remember to be strong and brave, but don't hesisitate to ask for help. You are going to be challenged beyond your wildest dreams by the demands of his treatment. There will be good days, and bad days. We are here for you while you have each one.

This website and forum board is a miracle and use it as much as you can.

- Michael

I had the surgery January 31. It is the only way I know that you can tell if the cancer is gone. We have a small support group here in Raleigh that have all had gthe surgery. We are all in remission so far after radiation and chemo. The surgery can have some complications, but none of us have any serious ill effects.

Hi Steve. Welcome to the boards too!

Glad you made it through the surgery well.

How was the radiation and chemo for you..? Where did you go for treatment?

I love replies! I guess we would call him a stage IV, huh? My dad has the same approach-do the dissection and remove nodes-that way we "know". He just had his 4th radiation treatment with Ethyol-he didn't experience any side effects. He is lubing up with spf 50 and heading to the driving range. I still am having a crappy day-it is heart wrenching (like you all don't know).
My dad lives 1 hour away-ALONE. He tells me I need to trust that he will ask for help when he needs it. I am learning that support is what keeps you all going. I fear that he will hide his pain from me-again-I need to trust the process. Did I tell you all I am in the medical field? I know too much about the body-knowledge can be crippling!
You guys are the best-I wish I could have you all over for a soda and salt swish party--wine probably doesn't taste too good for some of ya--
Thanks for the feed back regarding the dissection-
Has anyone had to get a trach with the tonsil ca??

Thank you so much Michaelii for the lovely reply-forgot to put that ; )
You are in my prayers-hang in there!!

you're welcome...from what I understand trach tubes are fairly rare from the surgery, but g-tubes from the rad/chemo are fairly common..

best wishes!

Hello Shawna, (from Minnesota also) I would not stage him a 4. With only one node and a small tumor size he would probably be three or less (I am not a medical professional.) Staging is somewhat art as well as numbers and at this point there is no way to determine if he has microscopic cancer cells in more nodes. Leave staging up to his doctors or ignore the stage altogether.

I had a radical neck dissection and tonsillectomy. No trach was needed nor did I have a feeding tube (G tube or PEG tube).

Before he has surgery, make sure he talks to someone about radiation and chemo as an alternative (no surgery) If his present doctors don't seem keen on the idea seek a second opinion. The radiation chemo combination has less side effects and may be as good or better than surgery. Mayo in Rochester is highly rated (number 5 nation wide) if he can get there. The best results are from the best cancer centers

http://www.usnews.com/usnews/health/hosptl/rankings/specihqcanc.htm

Shawna,

I'm also from Minnesota and I went to the the same doctor at the U of M. I was probably Stage 1, although he never told me a stage either. In my opinion, and the opinion of many others I have met at the U of M medical center, your father and I have one of the best doctors available. They also do meet as a team to decide on treatment options for each patient, so there isn't just one doctor making treatment decisons for your family to consider. I went to the University on a referral from the oral surgeon that did my biopsy and,like I said above, have been very pleased (and cancer free) for nearly 5 years. My best wishes to you and your father.

Hi Shawna,
I second Mark's views that your dad's cancer may not be stage 4 in view of the small size of the lymph node. You need not guess the stage because the doctors can give you a definite answer. Moreover, for tonsil cancer, sometimes surgery may not be necessary if radiation and chemo are effective. In my case, I didn't need surgery after concurrent chemo and radiation treatment.Neither did I need any feeding tube or trach throughout or after treatment. Everyone is different and I always think that the team of doctors should design the best treatment. Don't worry.

Karen.