Brian, Thanks so much for taking the time to post to me. You have a great site here, with so many kind and supportive people as well as a wealth of useful information. I have visited a lot of message boards on different topics (including this one), but have really seen nothing like this.

I guess my question at this point is whether I need to have a team in place to determine the best method for diagnosis, or whether I should go ahead with the tonsillectomy then, if it is cancer, put together a team to determine treatment plans. I'm not sure if this makes any sense....

Thanks again so much,
Jenn

Jenn,
Being that a tonsilectomy is major surgery for an adult, I personally would want to know whether they need to be resected or treated with antibiotics (have you had antibiotic treatment with no response?). Enlarged lymph nodes are also a normal sign of infection.

Smoking does increase your risk factor. Many of us who have had tonsil cancer had radiation and chemo only and it just melted the tonsils away without any surgery (as in my case).

Mark & Brian have given you very sound advice. Take a deep breath and get an appointment with a comprehensive cancer center. When it comes to the possibility of oral cancer, I would rather find out there then the local ENT.

And, QUIT SMOKING!

The ENT can do biopsy procedures to know what's what before he/she goes doing a regular surgery to remove something. This might include a fine needle biopsy (multiple puncture locations) on the node in question. In 3 days you would have a pretty accurate answer. My tonsillar cancer was diagnosed just from the node without biopsy of the tonsil. If it's in the node, the tonsil is a given. But besides the knife, there are scans you should be getting if things genuinely look suspicious. Multiple methods = less mistakes. Don't waste any more time. IF this is really something dangerous, it can move rapidly. A disease that is present in the lymph system is connected by that system to the rest of the body. If they find it there, you want to add a lung CT to the early scans to make sure that is regionalized to the mouth and neck. We have had patients here who were successfully treated for oral cancers, and the doctors never looked at the known areas of mets like the lungs. The patient did not fair well in the long run as the lung cancer was free to prosper for more than a year while they were treating just one area. As an attorney you likely know how those end up.... Were I you I would have the closest CCC in mind already, and I would be at the doctor's office on Monday asking for the 10 minute inexpensive FNB. If they insist on cutting before they know everything there is to know, if they delay in knowing what's what definitively

Brian,
Thanks again for taking the time to post to me. I have decided to go through with the tonsillectomy on Monday. If it is cancer, then I will move immediately to UAB (University of Alabama at Birmingham), which is a CCC and is ranked in the list linked from your site, both generally and for head and neck. Fortunately, it is local.

The ENT told me that the nodes are too small and soft to get a good needle biopsy. He did a CT scan of the neck, and the nodes are "borderline" suspicious in terms of size (1-1.5 cms). I have also read that needle biopsies can sometimes miss cancer and give false negatives. Thus, it seems that the only way to determine for sure whether this is cancer is to remove the nodes or remove the tonsil. Since there is presumably some possibility that there is cancer in the tonsil and not in the nodes, taking the tonsil out seems, although a bit extreme, probably the most conservative approach. Also, although this probably sounds a bit silly, I have a strong need to know as soon as possible whether this is cancer and do not really want to delay. If it is cancer, taking the tonsil out should not hamper the treatment plan that UAB will come up with, right?

As I told Mark, I hope that you are not offended that I sought your opinion, then did not follow your advice exactly. It is a huge help to hear from people who have been there and know so much more about this than I do. I also appreciate the advice about what to do if this is cancer, especially the part about a chest CT. My internist actually had a chest x-ray done before sending me to the ENT (because of the smoking history), and it was clear. But I would probably want more testing done for the known areas of likely metastisis. I will address this with the UAB people if I have cancer.

I hope I am making the right decision to go ahead with the tonsillectomy. I just want to know for sure what I am up against as soon as possible, and this seems to be the way of getting the most definitive answer.

Thank you again,
Jenn

This is sorta a segue question on Jenn's posts and Brian's [et al] responses. When I was a child[I'm 64 3/4 yrs. young now] it was routine to take kids' tonsils out. That hasn't been the case for a good many yrs. now. Have there been any studies that address the fact that yanking those tonsils early might be a good thing? I never missed mine. Amy

Jenn,

My thoughts are with as you undergo your procedure tomorrow. Please post and keep us updated, cancer or not, because we are here for you. Make sure your kids and husband have lots of ice cream around for YOU. They can eat it with you, but need to save some for you. (My daughters and husband loved having my special treats with me, they just had to make sure they left some for me!)

Sincerely,
Lisa

Jenn, Good Luck on your procedure tomorrow...., I had my tonsils removed at age 7, I think it was a thing to do back then, SMILE ....(actually, I had lots of colds and sore throats I am told by my Mom) hope everything goes well for you. God Bless, Carol

Hi Jenn,
I can understand your anxiety level and wanting 'this thing out NOW so I know what it is'. When I had cancer the first time, I had a swollen lymph node in the neck which they did a fine needle biospy on and it came back negative. Three weeks later I had another one and had them do a surgical biopsy and it was postive. There was no known primary so I immediately proceeded with the neck dissection to make certain it had not spread to any other lymph nodes. Fortunately it had not. Could I have avoided the neck dissection. Yes. Radiation would have probably handled the entire problem, but I was just more comfortable knowing that they had removed it and there were no more nodes involved. I was running scared and there was noone to consult with. A tonsillectomy as a adult is no walk in the park as has been stated. I wish you the best tomorrow and hope everything comes back negative.

Take care,
Eileen

Amy,
I too had my tonsils and adenoids yanked as a kid and have wondered the same thing. When I used to visit the Compuserve Cancer forum about 6 years ago, the oral cancers were mostly thyroid and very rarely tonsil. Now we see on this forum many patients with tonsillar cancers. I too wonder if any one is doing a study on the age groups that are getting tonsillar cancers.

Take care,
Eileen

Hi
I had my tonsils removed aged 5 and my tonsillar pillar removed aged 57, perhaps good my tonsils were removed, a friend of mine had his left tonsil removed 2 weeks ago, along with a lump in his neck he is 35, he gets the results tomorrow, good vibes please for Anthoney...
Sunshine.. love and hugs
Helen