I have been diagnosed with left tonsil cancer that involves lymph nodes. The Doctor said I will have to have surgery and something called a neck dissection and then radiation. Is there anyone here who has been through this type of cancer? Thanks, Anges1313

Many people here have been through what it sounds like you have. As you can see by my signature line, I had BOT (base of tongue) with mets to 2 lymph nodes almost 2 years ago. I was told by Moffitt, a CCC (comprehensive cancer center) that they did not recommend a neck dissection first but wanted to try the chemo and radiation. If I needed a ND afterwards it was still possible. Mind you I had already been to see 4 other docs and 3 of them recommended a ND. My point is if I were you I would consider another opinion before I went with surgery. The radiation is the only effective way to kill the cancer so many now believe there is no point to delay the radiation while you heal from surgery.

Where are you being seen?

Exactly what type of cancer do you have?

Did they tell you what Stage it is?

How big is the node(s)

Did they mention any chemo?

I am seeing an ENT Doctor in Rome, Ga. I have left tonsil cancer with the lymph nodes involved. How many, I don't know. These are questions I was hoping to find out what to ask the Dr. Stage? unsure but my tonsil looks terrible and I developed a sore throat and thought I had strep throat but I didn't have a fever so I found out it was cancer. He didn't mention any radiation. Just had a ct scan, pet scan x-rays, and the Dr. said I needed surgery to remove the tonsil and because the lymph nodes were involved I would need a neck dissection and then radiation. Thank you for replying as this has already given me info on questions to ask. My husband died Feb.14, 2008 and I have been sick ever since. But had no idea how sick I was.

I meant he didn't mention any chemotherapy, he did mention radiation. Sorry.

Angel,

I am so sorry that this year has been such a battle, first your husband dying on Valentine's Day and now this.

Please consider getting a second opinion at a Comprehensive Cancer Center. Someone will probably chime in with one that is in the Georgia vacinity...I would have to look it up (surely there is one in Atlanta.)
This diagnosis calls for "big guns" .....doctors and facilities experienced in head and neck cancers and treatment protocols. I know you feel overwhelmed and scared..I have been there and just the act of calling and setting an appt. with a Cancer Center seemed so hard but, once you make the call, they will guide you in the right direction.

You have come to the right place to get opinions and support...stick with us and we will help you thru the upcoming weeks. Lots of people here have been thru this storm and are able to give you invaluable information. Start reading the forums for answers to questions you probably already have. If you can't find information by reading...ask...someone will answer. We are here.

Deb

Angels --

The advantage of a comprehensive cancer center is that you will be seen by a team of specialists -- surgeons, radiation oncologists, medical oncologists (chemo), nutritionists, dentists, etc. -- who will consider your specific situation and work together to develop a treatment plan. Because it can affect several different functions critical to life (eating, breathing, talking, etc.), this type of cancer, more than many others, requires the involvement of specialists in a variety of areas. Your ENT may be a good doctor, but he may also deal with removing tonsils, fixing deviated septums and putting ear tubes in toddlers. To fight this disease most effectively, you want to be seen by doctors who deal with it every day.

It sounds as if you have been seen only by an ear/nose/throat surgeon. Not surprisingly, surgeons like to do surgery, and so that is what he is recommending. But if you spend time reading these boards, you will find that many who post here (and whose cancer was similar to yours) were treated at a comprehensive cancer center with radiation and chemotherapy and did not have any surgery until those treatments were completed -- and then only if necessary. Some, of course, did have surgery first, followed by radiation and chemo -- but that course of treatment came as a result of consensus among doctors representing all those specialties, talking among themselves in a "tumor board" at a comprehensive cancer center.

Several people who post here were treated at Emory University in Atlanta. You can do a search for Emory in the Search box in the upper-right corner and find out who they are, then send then e-mails or private messages to learn the specifics of their treatment.

Getting two or three opinions (or, in David's case, five!) is common, and your doctor should not be resistant to the idea. If he is, it's time to find another doctor. In the meantime, you've found the best place around for information and support. Keep reading and keep posting.

All the best,
Leslie

What would be the difference in going to a cancer center versus an ENT? I know it must be important otherwise you wouldn't have told me. One thing I am worried about also is that I have over an 85% blockage in the left carotoid artery and my vascular surgeon had told me previously not to have any surgery until I had surgery to correct that, as I couldn't stop taking my blood thinner. When I called the vascular surgeon up to tell him about the cancer, his nurse came back to the phone and replied that he said to go ahead with the cancer surgery. It kinda made me feel like he didn't care what happened. Thank you so very much for your kind words. It really meant a lot to hear from you and David also. I am reading up on all the material in this website. So many wonderful people sharing their livers to help people like me.

Wow! Thank you Leslie. I hadn't a clue. I just don't know what to do without information such as I am getting here. I live with my Mother right now taking care of her. She is 81 years young, and legally blind. I don't know how to tell her that I have cancer. Thank you so much for the info!

Given your history, your team at a CCC (comprehensive cancer center) would certainly include someone who can weigh in on how your artery blockage would affect your course of treatment.

Either your current doctor can make a referral for a second opinion or you can simply call and make the appointment yourself. Most CCCs will move quickly to fit you in once cancer has been diagnosed; they will tell you what you need to bring to your first appointment or arrange to have sent in advance (biopsy slides, test results, etc.). I believe most insurance plans will cover a second opinion. (Not sure about the third, fourth and fifth, though -- you can ask David!)

I mentioned Emory because it appears to be relatively close to Rome and because several people who post here have been treated there. Others here have gone much farther from home for their second opinions and/or treatment -- for example, to M.D. Anderson in Houston or Memorial Sloan-Kettering in New York, the top-ranked cancer centers in the country, according to U.S. News.

-- Leslie

I did find a Doctor on the Emory website that does stenting in the carotid so I e-mailed him and ask if it would be dangerous for someone to have cancer surgery without repairing the carotid artery first. Also, I found out that Emory has a couple of head and neck cancer clinical trials as well. They basically said they would do the radiation or chemo prior to neck dissection. My ENT hasn't done a biopsy yet. Shouldn't that be done before a surgery should be scheduled?

Sorry to hear your diagnosis. I had a sore on the side of my tongue that got worst and hurt the biospy showed cancer. My ENT doctor had me in surgery within a week and the cat scan showed swollen lump nodes 7 were positive and removed stage 4. Then I had radiation and chemo. I felt comfortable with having all 3 things done to knock out this cancer. Radiation was the hardest thing to get through. Every case is different. Take someone with you to your appointments it can be overwhelming and take notes then sit down and decide the best treatment options. Don't do this alone. Keep in touch !

Thank you Tammy. Did you say you had surgery and afterwards the chemo and radiation, if I understood it correctly? Does that put you at risk of the cancer spreading to other parts of your body to have the surgery first and then the radiation and/or chemo? I've just lost my husband in Feb. 2008 and I can't find it in my heart to tell my Mom. My son is a great help but he works all the time. I will ask someone from a church maybe or the cancer society when I find it here to help me. During my husbands illiness, he had enphysema for years, we lost our home and everything else, then I lost him, and now I'm dealing with this and it's a bit overwhelming. I am exhausted and didn't know where to turn until I found this website. Now I feel I can at least find some answers to some of my questions or know how to ask some important questions that will help me to make informed decisions.

Tammy, when they did your surgery, did you have a neck dissection? If so, do you have to be incubated to have that done?

You just posted that your ENT hasn't done a biopsy yet?? Then how does he know it's cancer? I haven't met one doctor yet or heard of one, for that matter, that has the ability to visually determine cancer. A biopsy is NEEDED BEFORE YOU GO ANY FURTHER.

IMHO you need to run away from your ENT and into the arms of Emory or some CCC. This is your life and only you will have to deal with the aftermath of whatever you decide to do IF AND WHEN IT IS DETERMINED TO BE CANCER.

The American Cancer Society in your vicinity would probably be a big help with logistics and such...getting you to a CCC..a place to stay if you have to be away from home for treatment (they run Hope Lodges at a lot of CCC's - marvelous facilites)...care for your Mom, if needed. I would call them to see what they can do, but for sure, call (today) Emory's Head and Neck Clinic and get an appointment...they can most likely do your biopsy as well.

We are not being alarmists, but know the importance of a good diagnosis and treatment plan..you need the expertise of several diciplines(tumor board)to guide you to the best care and cure. These doctors use guidelines and their experience (because Head and Neck cancer is all they do day in and out)to stage your cancer (if it is really that) and develop a treatment plan. Once again, I know this is overwhelming and very scary, but you can do this...your life is at stake.

Deb

I was diagnosed with left tonsil and lymph node involvement 3 years ago. I had the neck disection after the radiation and chemo. My understanding is that if you are HPV+ the neck disection is not necessary. I was not HPV+ so had the surgery. I would be happy to talk to you anytime. Call me at 732-687-3518 anytime. All the best.
Rob Jaffe

It is not a given that just because you are HPV + you don't need a ND. I wasn't tested for HPV until after my Tx was over and after months of my persistence and insistence.

Moffitt, almost 2 years ago, told me that their thinking was that the Radiation is the only effective killer of my SCC and they saw no benefit of doing a ND to take out my lymph nodes (at least 2 were Dx as cancer) and wait for me to heal before they started the rad which they said should kill the cancer in the LN's anyway. They also said they could always remove a LN that wasn't cooperating after my Tx was over. I am also sure that their recommendation considered the size of my LN's as well.

As far as HPV, a recent study has concluded that the HPV+ SCC is different from HPV- SCC and that it responds better to the conventional Tx and re occurrence is less likely. My RO told me shortly after that study was published that if he had known this he MAY have Tx me differently. Didn't ask him what he meant but I'm not sure I would want to be a Guinea Pig.

I totally agree David. Today my throat hurts so bad, and I take morphine for ruptured disks in my back, but it doesn't do anything for my throat pain much. I am going to make several calls today to find out who else I can see. Even my hair has an odor to it a day after I wash it. I think I have more problems than the ENT has a clue of. But he is definately one of them. Thank you for your advice. I must hurry and get more info. Thanks again, Angel

Thank you Deb. I appreciate it.

I don't know if I have HVP. During a ct scan a small tumor was found on my uterus but nothing was said about that after the pet scan. I need more info from the Dr. for sure. Thanks, Angel

Angel - I think at the very least, you should have a consult at Emory. Just a clarification, Emory is NOT a CCC - comprehensive Cancer center. They are trying hard to attain that level but don't have it yet. That's one of the reasons that I went to MD Anderson in Houston - the other being that I decided I wanted to go to a top CCC and not mess around, and I was lucky to have the abilty to do that, plus have family in Houston which is one of the reasons I chose them.

However, one of the ENT Surgeons at Emory studied under my surgeon at MDA. Given that it sounds like it might be hard for you to travel far, you should think about Emory. Here's a link to their department: http://otolaryngology.emory.edu/index.htm

The answer to your question is yes I had surgery in 10/07 then started chemo and radiation in 11/07. The neck dissection in which was positive for stage 4 cancer. Now if the lymph nodes in the neck were negative then the doctor said he would have only done radiation on me. I was not incubated because the tumor was on my tongue and did not proceed down the base of my tongue to the throat. 1/4 of my tongue was remove but I woke up talking and haven't stopped every since. I live here in a small town and had the best care ever. My ENT is very direct and tells me like it is. As you are new to this web site if you look at the bottom of this post it will give you info about me it starts out Tammy then with my diagnosis etc.. It helps to relate to that person of there circumstances. But I also wanted to know if a biospy was done ? That is how they know it is cancer. I had 1 biopsy it didn't show cancer then 3 weeks later after the sore worsten he did 2 more and it came back positive. Doesn't make since that 3 weeks later it showed stage 4. But what of all of this makes since. If you need someone to chat with just email me. Take care !

Angel --

Clarification of Ginny's clarification (this is from a post I made last year):

The term CCC as most frequently used here [on the OCF message boards] means that the facility uses a team approach to dealing with an individual case, bringing the knowledge and experience from a variety of specialties to each treatment plan -- a "comprehensive" approach, as it were.

I think that what Ginny (Me2) means when she says that Emory is not a CCC is that it is not a National Cancer Institute-designated Comprehensive Cancer Center. Institutions choose to apply for such a designation, which is based on the facility's interests in research (since the NCI is a main source of funding for research programs), and it sounds from Ginny's post as if Emory is working on that process, which involves a lot of paperwork and can take some time to complete. Here's an explanation from that same post:

[quote]The National Cancer Institute provides funding for research. Institutions apply for NCI designation (the selection is done through a peer-review process), and the term "NCI-designated" primarily has to do with the facility's research interests --- not the quality or scope of patient care.

An NCI-designated comprehensive cancer center means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated cancer center concentrates research in one or two of those areas, and a few of these facilities -- like the Wistar Institute in Philadelphia or the Salk Institute in San Diego -- do research only. Further information is available here: http://www3.cancer.gov/cancercenters/description.html [/quote]
Based on what you have posted, it appears that your medical history is complex. An appointment at Emory or somewhere similar, where a team of physicians from a variety of specialties can evaluate what's going on (starting with a biopsy to determine what you're dealing with), is a great place to start. As I mentioned before, several posters here have been treated at Emory and I'm sure will be happy to provide information about their experiences.

All the best --
Leslie

Thanks Leslie for posting this...I had not researched facilities at all when I answered Angels and regretted it. I have learned something myself about the NCI designation and what it means.

Always something to learn here....Deb

Thank you all for the excellent information you have given me. Today I went and picked up a copy of the ct neck scan and I tried to get a copy of the pet scan but was unable to, however. I have an appointment with my ENT Doctor on Monday and his office said we would discuss this more in detail when I see him as to what he plans to do and more on my diagnosis. I explained that I would like to know more information about my diagnosis so I have the opportunity to research it with some knowledge prior to my next visit with my Doctor. But unable to get anymore today. My left tonsil is very swollen since first of February and looks almost like strep throat and on each side of my throat under my chin, I have large swollen glands like I have the mumps but without the swelling in the jaw area. I talked with my son and explained what you all have said in reference to a biopsy and he totally agreed that it must be done first! What my ENT said to me was he must remove the tonsil and have it examined, and would have to do a neck dissection as the lymph nodes were involved and then do radiation and he wanted to do this in 2 weeks and the surgery would take about 4 or 5 hours if all goes well, and he would have another ENT assisting him in the surgery and he will try to preserve all the nerves and blood vessels that he could during the surgery. I explained to my son that is not the right order in which we need to proceed that a biopsy must be done first and I needed a second opinion at a CCC. I called for information also from the National Cancer Center and they have e-mailed me a lot of information so I will be reading up on that as well. The pain in my throat seems to be getting worse in the last month. I must say that I am very worried about all of this and I thank you all again for the information and your kindness. I will post again Monday and maybe I will have all the information I need for you all to be able to steer me in the right direction with. Again, Thanks, Angel

Me2, It is wonderful that all went well for you and everything looks good now, and I thank you so much for the information.

Leslie, The information you have provided was very much appreciated. I just am so thankful that I found this website before I proceeded with anything. You all have been so nice and so informative and the willingness to share a part of your lives means a lot to someone like me who doesn't have a clue as to what to expect. Thank you so much. Angel

David, In reference to your question on the size of the nodes it said soft tissue fulness and 1.5 cm at the left linguel tonsil area, a singular anterior jugular lymph node 7 mm node on right side is evident, and asymmetrical enlargement of the right thyroid lobe 1.5 cm in upper aspect of right lobe. I will get the pet scan and other info on Monday. Thank you, Angel

Angel, I see you had a Pet Scan. To only my knowledge I have only seen people have a Pet Scan after treatments I just had mine ( all Clear ). But I can be wrong. Also my ENT told me that even if my tumor was not cancer he was removing it no matter what. Every doctor is so different. Maybe your doctor knows he needs to do surgery no matter what so why put you through a biospy. I don't want to confuse you anymore then what you already are. So much to take in we all know that. But I never thought I would be on here sharing what I know like so many did for me. Just take a deep breathe and you will get through.

Angel,

If you're interested you should read more about HPV but first you need to be seen by a CCC. You are putting the horses way before the cart here. BTW even if you were to have HPV in your cervix that doesn't mean it found it's way to your mouth. HPV can lay dormant for decades before something happens to allow it to become cancerous and this is a really overly simplified statement.

First things first....make an appointment NOW.

Tammy, The reason the Dr. gave me for taking the pet scan was to see if what I have had spread into the lymph nodes or other areas of the body. I will know a lot more on Monday as I sure do have a lot of questions for my Dr. Thank you so much, Angel

Hi David, What I hope for is that when I go to my ENT on monday and have all my questions in order to ask him about, (now having a much more knowledgeable base for beginning questions) is that he gives me straight-up answers. I personally would like to know why or how he can diagnose me without a biopsy? See David, if I hadn't of found this web-site doing some research, I would never have learned all the things you folks have shared with me. And I really appreciate it. The Dr. never diagnosed me with HPV so I don't think I have any worries on that. I also have talked with my son about going to the CCC, as I totally agree with you, and so does he. Thanks again for the info. Angel

Can't wait to hear your followup report.

Today went very unnerving. I saw my EMT. He said he had set up my surgery for this Friday and proceeded to explain that he would be removing the left tonsil, get a pathologist to immediately test it to insure it was cancer, but he says he knows it is anyway due to pet scan showing it in lymph nodes,so he would be doing the selective neck dissection and showed me where I would be cut and told me he may not could save the nerve for my shoulder and not the one for my neck or side of face area and afterwards I would start radiation. Well I tried to start asking questions and mentioned I was on blood thinner so to make a long story shorter, he went out and called pathology and the anasteasoligist and came back and said he couldn't do the surgery for 2 weeks and I had to stop my blood thinner and aspirin immediately and that I have the possibility of a risk of a stroke. He said he would contact my vascular surgeon also. He said his nurse would bring me some papers to sign and if I had any questions he would come back in there and answer them. Well, I definately did, and he came back in and said now that he would only be taking out the left tonsil and have it biopsied and he really didn't want to answer any questions as he was basically to busy and behind due to an earlier emergency. But the question I wanted to ask most of all was: If he does remove the tonsil and if it is canser as he says it is, then wouldn't it possibly spread before they do the neck dissection and radiation? Lord I am in a mess. Now I definately got the blues. This Dr. is very wishy washy. I am calling the American Cancer Society tomorrow to see if they can help me. I did get a copy of the Pet Scan and it confims cat scan and says highly suggestive of neoplasm and a few other things. The good thing was it is confined only in the neck areas on left and smaller part on right thyroid gland, but not anywhere else. He still give me a diagnosis without a biopsy.

Robroaster, Thank you for your information the other day and I would like to take you up on calling. I will do that Tuesday and I appreciate it. Angel

Do not let them do a neck dissection, or any surgery for that matter on you, without getting at least one or more second opinions. Get to a CCC now.

Are you, were you a smoker?

yes David, I was a smoker I am sorry to say. I wish I had never knew what a cigarette was. Both my parents smoked but luckily my son doesn't nor does his children. I am very proud of him in many ways.

In answer to your question about it spreading, yes, time is of the essence here but you still should get at least one more opinion before any big surgery (though I think it can wait until after the biopsy). You should be lining up that opinion at a CCC right now.

Radiation and chemotherapy alone can, in some cases, kill tumors and cancer in affected lymph nodes so they are likely to clean up whatever happens between the biopsy and the next step. But do get a second opinion at a CCC. This is really important--you only get one chance to deal with this the right way and having second thoughts afterwards is not what you want.

Nelie

Nelie, Thanks, I have thought and thought over the past week about how to handle this. I have a ENT Dr. who is a bully and doesn't want to listen to me or answer questions. He didn't even know I was on blood thinner and says I am a good candidate for surgery even though I have numerous serous health issues such as the blockage in carotid artery and others, But I have made my mind up that I am not having anything done until I get a biopsy. If I have to end up having surgery, I see no point in making it 2 surgeries taking the tonsil out and then going back and doing a nd. I don't have a ccc in my area.

Angel - are you going to have the ENT dr who you say is a bully and doesn't listen to you, do the biopsy? I really wish you would consider going to Emory for a consult and second opinion. Have you asked your current ENT how many patients he has treated with oral cancer? When I asked the ENT that did my original bx that question, he told me he had "3-4" other patients. Well, believe me I did not want someone touching me that only had that little bit of experience - so I immediately want to a CCC (not Emory, I think I responded to you before that I was lucky to have the ability to go to MD Anderson in Houston, Tx, although I know it's difficult for a lot of people to travel that far)

Any physician that's too busy to answer your questions is not the physician you should be seeing...

Me2, Oh no, I am going to try to get the cancer society here in Rome to help me get to Emory or there is a CCC in Birmingham, Al. also that I have found out about. Both our Hospitals here advertise for treating cancer but neither is a CCC. I know in my heart that this Dr. doesn't have a clue or just doesn't care one and that scares the heck out of me. To this day he hasn't even gotten a list of my routine medications. I am talking with our local chapter tomorrow, Everyone has been closed for the holiday. Hope you had a nice one.

You need to seek out the doctors that specialize in cancer for this. I wouldn't want the guy that is used to treating alergies and ear problems treating my cancer. I hear MD Anderson is the best. My care at UT here in San Antonio was also world class.

Angel - good for you for reaching out and finding resources to help you. I hope your local cancer society could give you some assistance with this. I am very glad you realize that the Dr. you have been seeing isn't the right one for you to continue seeing if you are going to kick this!

Thank you Texas and Me2. I definately understand. But you would be suprised at how hard it is to get to the right information in my area. But I have some good leads today I have been working on. Thank you both for your response. Very much appreciated.