I have been reading these boards for a couple of days while I await diagnosis. I went to the ENT with a couple of enlarged lymph nodes in my neck (one of which has been there for many years so seems less suspicious, at least to me). He noted that one of my tonsils is larger than the other, and scheduled me for a CT scan of the neck. That revealed that I have several enlarged lymph nodes (1-1.5 cms), I think on both sides of the neck. Otherwise, the ENT did not think the scan showed anything suspicious, although we are still waiting for the radiologists report. He also did a scope (up my nose, down my throat, etc.) and did not see anything suspicious. He and his partner, who also looked at me, recommended that I have both tonsils taken out and biopsied, which I am having done on Monday. Does this sound like the correct way to look into these symptoms? I wondered why they did not remove/biopsy the lymph nodes instead, but they said that was not the protocol in the event that it is cancer.

Needless to say, I am worried out of my mind. This board has been helpful in at least preparing myself for what I may be in for. I would welcome any thoughts as to whether I am approaching this correctly.

On a personal note, I am a 38 year old female, married with three kids. I have smoked on and off since I was in my late teens. I quit for 4.5 years (1999-2004), but unfortunately started back last year. I am trying now to quit again.

Thanks, Jenn

Welcome Jenn

What a difficult time for you - you are so young, I certainly hope your tests are negative for cancer.

When I went to my gp with a lump on my neck I had an ultrasound that day, the radiologist did a needle biopsy on the lump there and then. It came back the next day positive for SCC. From there I had CT, PET etc to discover the extent of disease which turned out to be significant.

The pathology of the needle biopsy was able to direct the docs to the tonsil. Apparently cancer cells retain many characteristics of their origin (this is a non-professional interpretation).

The main site here is full of info regarding diagnosis etc. I found it very helpful on my journey.

Please let us know how you are progressing. Many survivors here have walked a similar path and will offer support.

I send best wishes and love from Helen

Jenn, I am sorry to hear of your troubles, but glad that you found this site. The information on here is enlightening, and the people are encouraging and helpful. You don't mention if you are being treated at a large Cancer Center Hospital or not. If you are not, you might consider going to one for a second opinion. If they agree with your docs, it will put your mind at ease. If they have another plan of treatment, it will give you more options. Either way you win.
Best of luck, keep us posted!

Andrea

Jenn, did your doctors suggest cancer? or is that your worst case scenario? It could be a chronic infection or some other thing. I think it is safe to trust their opinion (although you'll hate the tonsillectomy) or ask them if instead a biopsy of one of the nodes would be better.

If it is cancer, Radiation treatment will be a likely treatment and can, in some cases, be done without removing the tonsils. Recently radiation is the preferred treatment and not always surgery.

Let us know what happens (and I am not a medical professional)

Wow! Thanks so much for the supportive responses. It says a lot about the people on this site that you all have taken the time to offer advice and support despite the hard road you have been and are still traveling.

In answer to the questions, the ENT suggested possible cancer of the tonsils based on the asymmetry of the tonsils, the enlarged lymph nodes on the same side as the larger tonsil and the smoking history. He says that the lymph nodes are too small and soft to do a needle biopsy. The radiologists report came back on the CT scan today, and it said the lymph nodes we were concerned about on the right side (the one with the larger tonsil) are borderline suspicious in terms of size.

The ENT is not at a major cancer center, and if I am diagnosed with cancer I will probably look elsewhere for two reasons. First, I am in Birmingham, AL and UAB is generally the best hospital here for cancer, although I do not know about their experience/expertise for this kind of cancer. Second, what my current ENT said about treatment if this is cancer is not consistent with what I am reading on this site and elsewhere as the most up to date approach. So, I am basically just sticking with this ENT for diagnosis purposes. I guess I am just wondering if the tonsilectomy is the correct way to make the diagnosis. It is scheduled for Monday, so I need to make a quick decision. I think the ENT thinks it is best because of the obvious difference in the tonsils, although he does not see any lesions and nothing peculiar about the tonsil in question(except possible size difference) showed up on the CT scan. My impression is that he views the tonsilectomy as being rather routine, so if it is not cancer, no harm no foul. It sounds like the recovery is a bit of a drag, though nothing like what will follow if it is cancer. I am so confused by all this and just want to make sure I am getting started in the right direction in the event that this is cancer.

Again, thanks so much to each of you for taking the time to respond.

Jenn

Jenn, from what I have heard, a tonsillectomy is not nearly as routine in adults as it is in children. The pain is worse than anything else I went through (the exception is the last two weeks of radiation therapy) and I only had one removed. Soft nodes usually means less likely to be cancer.

I really hate to make suggestions that alter diagnosis and treatment plans (because I hate being wrong among other reasons) but I really think you might get that second opinion at a major cancer center before you have this surgery. At the very least make some phone calls. A few more days shouldn't hurt if you have to postpone the tonsillectomy.

Thanks, Mark, for your thoughtful response. I think I will try to at least make some calls tomorrow. My father had suggested I get a second opinion from a friend of his who he thinks is the best ENT in town, so maybe my father could hook me up with him for an opinion. He is not at UAB, though, but I may see if there is someone there who can discuss this with me as well. I am certaily willing to do the tonsillectomy if that is what I need to do. I am just not totally clear that it is the most sensible approach. My current ENT told me that the tonsillectomy is the only way to know for sure whether I have cancer. If that is true, then I am going to do it since I can't stand the worrying much longer!

Again, thanks for your help. I tried several other sites before finding this one (which, by the way, does not come up in several pages on a yahoo search for head and neck cancer support!), but this is by far the best in terms of supportiveness and thoroughness of information.

All my best for your continued recovery.

Jenn

Thank you Jenn!

I understand completely the fear thing! take several deep breaths and tell yourself to take this one moment at a time. As soon as the fear comes close your eyes and do a "systems check" You will find that you are, for the moment, just fine. Stay with that positive thought. This isn't cancer yet. If it is you can deal with that when the time comes.

I have another thought about the "only way to tell" comment. It is possible to remove a node completly for pathology (not just a needle biopsy).

Anyway, I hope for you to have a happy healthy outcome.

PS a google or yahoo search on "oral cancer" would have found us right away.

Thanks, Mark. I wasn't too up on the lingo yet since all of this is still new to me, so "oral cancer" did not occur to me! Actually, I started out searching for tonsil cancer, and found next to nothing! In any case, I'm certainly glad I found this site.

I actually asked why they could not just remove the lymph nodes rather than the tonsils (as this seems much less invasive and painful in terms of recovery). My ENT had his partner in there for her opinion too, and they said that if it is cancer, then they would treat with radiation rather than removing the lymph nodes. The suggestion was that taking the lymph nodes out would mess up the course of treatment if it is cancer. The partner also said something about a fear of releasing cancer cells into the system if they removed the nodes. It seems from what I've seen on this site and elsewhere that neither of these propositions is necessarily true, which is one of the reasons I will not stay with these doctors if this is cancer.

One final note: I am a lawyer and sometimes I think that doctors take the most cautious approach with me for fear of malpractice (although I am a defense lawyer, and not in that field of law). The ENT actually told me at my initial appointment that we would just watch all this for 30 days. Then he called me back on the phone and suggested that we should go ahead with a CT scan and scope. I think his main concern is the enlarged tonsil/asymmetry. I guess there is a chance if they tested the nodes that they could be non-cancerous but the tonsil could still have cancer, so maybe that is why is recommending the tonsillectomy?

Again, thanks for all your attention and support. I find that one minute I am feeling positive and good, and the next I find myself looking at my kids and wondering if I will be here to raise them! I am trying to make myself not panic, but I am a worrier by nature. You and the others here have been through so much more fear and uncertainty, so I guess I should not be burdening you with my worries though! You are sweet to take the time to respond to me anyway.

Best,
Jenn

Jenn... If all you have is a hammer, everything looks like a nail. ENT's are surgically trained. While time is always of the essence, I would prefer if my treatment plan were put together by a tumor board composed of doctors from different disciplines at a major cancer center. My stage 4 tonsil cancer was treated primarily with radiation, and secondarily a neck dissection was done. This was at one of the best cancer hospitals in the world. Radiation is no walk in the park. But it is likely going to be part of any comprehensive treatment plan that you get. I would be sure that a radiation oncologist was part of your decision making team and a chemo guy as well, as these days it is not uncommon to have simultaneous chemo to sensitize the malignant cells to the radiation. As to your moods...get ready for the rollercoaster. Until things are definitive the anxiety quotient is high. If and when treatment begins there is at least a sense that "I'm doing something about this", then as treatments and recovery drag out (and they do) it's "when is all this going to end", to finally living your life as a survivor with the real sense of your mortality (which for most people is an abstract concept until the crap hits the fan) that comes with that. Treatment modalities and current standards of care are changing rapidly. We are learning more each day. You are at a place where getting the best advice from the best people is the one area in which you can feel a sense of control. After that you are in their hands for the most part. Now is the time to make the best decisions you can, in combination with the brightest minds and most experienced doctors you can find. After that, don't look back and second-guess your decisions. Lastly, do not let geography or your work schedule or commitments dictate who diagnoses you or develops your treatment plan, or the time frame it takes to get that done. As you can see this is a well-informed and caring group of people. Few agendas, lots of experience, and an honest sounding board for you to use. If you need us, these people will be with you though every question, doubt, and emotional upheaval. You can count on them.

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

I just read your post and wish you the best! We are here when you come back.

Jenn..... I am not a doctor, and more than that, i do not all the details of your situation. That you did not take my advice is no issue to me, and shouldn't be to you. I merely wanted you to get diagnosed as soon as possible so that if there was something serious you could catch it at the earliest possible time. FNB's are indeed dependent on one of the several pucntures hitting the spot where the cancer is. They can miss things. Scans have their issues too. There is no scan that diagnosis cancer, they only yield clues that might lead someone to belieive that it is cancer. What you are left with is a need for a piece of the suspect area that can be looked at under a microscope for a definitive answer. If this comes back negative from the removal of the tonsil we'll all cheer for you... if it comes back as something more serious, we'll all be here for you. Don't put too much weight on my opinions. While I take lots of courses and am at cancer symposiums all the time, l'm just one person out here who is still learning myself. Let's hope this turns out to be some infectious process and this is one group you don't have to join.

Jenn --

I hope everything went well for you and it turned out to be just an infection.

My husband had a similar situation, in fact his enlarged lymph node was CT-scanned and radiologist said it was "unlikely to be cancer" but was most probably just an abscess. Barry also had an asymmetric tonsil, so his ENT wanted to take it out. (She had HNC as a young woman and was being suspicious or perhaps more correctly, cautious.) However, Barry put it off and put it off as he has an aged mother in England he had to visit, some friends coming over for a month, you know, the usual --so several months passed.

Finally the ENT got him into surgery for what was to be a routine tonsillectomy (and she said she does a lot on adults) but he was one of the unlucky non-smokers, a pathology exam was done during surgery and it was cancer. The ENT took all the tonsil out down to connective tissue, negative margins save for a bit at the base of tongue, and did a fine needle biopsy of the lymph node (also cancer) -- very very bad news as he had been totally asymptomatic except for the somewhat enlarged node, and was in fine health. (As an aside, this surgery wasn't very bad, he was back to eating normally in about a week and only had serious pain -- controlled by Percoset for about 2-3 days. After that Tylenol was enough.)

The ENT sent us to Johns Hopkins because (as in your situation) our local hospital in MD does not have a comprehensive cancer center. CT scans done at the time of diagnosis fortunately showed that the intervening months of delay had not seen much growth if any, so lucky there at least.

Barry underwent 7 weeks of concurrent chemotherapy (carboplatin) and radiation (tomo-IMRT) and is now 6 weeks out of treatment and doing very well. Yes, he had many of the nasty side effects you will read about but they are resolving, and some were not as bad as we expected. We got a lot of support and advice from this forum (and the OCF web site, a must-read) as well as from the doctors and nurses at Hopkins.

He went back to his ENT yesterday and she feels the cancer responded well to treatment, based on her exam, but awaits a more formal assessment in another 3 weeks when Hopkins will do scans and perhaps, a biopsy. So keeping our fingers crossed!

Meanwhile Barry is eating well, going birding every day that the weather is nice, and attacking our piles of leaves with rake and leaf-blower.

Again, hope the news was good but if not, we are here for you...

Gail