It's been the roughest month of my life. Hoping to get some insight and understanding. I have had a dull ear ache for a while now. It was only when I swallowed, but now there is a feeling of fullness all the time. It's not very painful, just annoying. I looked at my throat and noticed my left tonsil was larger than the right, and very noticeable. The left tonsil also took on a different shape, very lobular in appearance. I went to an ENT who said that the only way to know if something was going on was to remove the tonsil. I am having a tonsillectomy on the 17th of June. I decided to get a second opinion from another ENT just to give myself some answers. This ENT left me even more concerned. He found two enlarged lymph nodes on the left side as well. I had not quite noticed those because was so focused on the tonsils. And the first ENT didn't even mention the large cervical nodes. As a result, the second ENT is putting in a request to have the lymph nodes removed as well while getting the tonsillectomy. Both ENT's discussed HPV SCC with me. I am shocked, scared, and devastated. I know cancer does not discriminate, but right now my thoughts are consumed with leaving my daughters, ages 6 and 2 and my husband. Are there long term survivors out there who can offer me hope? Can anyone tell me their story, what brought them to the doctors initially and how it went from there? I am scared. Thank you so much.

JGavin

JGavin, hello and welcome to the neighborhood. Unfortunately there isn't a lot you can do until some tests have been done. It does not sound like you are going to a comprehensive cancer center. If not, I would seriously condos dear that. I would get another opinion from a National Comprehensive Cancer Center member institution (www.nccn.org). They set the treatment standards/protocols and have specialty institutions by cancer type. From what you describe and your fear of cancer, it could be just as you fear. You may only have one chance to beat the beast. Don't you want to arm yourself for the battle?

Sorry you are having to go through this. Hang in there and remember...it ain't cancer till they can prove it. Best wishes for a bad infection or something other than cancer.

Ed

Welcome, but sorry for your troubles. You did the right thing going to the ENT, and even getting a 2nd opinion. If they both want to do surgery, it makes me wonder if they suspect cancer. Tonsils can be different size, one bigger than the other, I forget which one. Anyway, being you mentioned an enlarged lymph node, why don't they do a FNAB, Fine Needle Aspirational Biopsy under ultra sound guidance. It's quick, painless, takes about 15 minutes, and is accurate, if done by an experienced pathologist, who can take a sample, and looks at it under a microscope, and see if its cancerous. Mine would tell me on the spot if it was or not, and also send it out for further histology, and confirmation. Following that or before, a PET/CT to see if there is any other involvement, and then a triple scope aka pandemoscopy, under anesthesia, to check the aerodigestive track, and take a biopsy sample of the tonsil, other area, and see if the tonsil is cancerous, and if so, take it out then or do other treatments. I had tonsil, and no surgery was not done to remove the tonsil, but plan was Induction Chemo, followed by chemoradition was recommended. Also, I can't see them not doing any clinical testing to stage your cancer, TNM, tumor, Nodes, metastases. As Ed recommended, maybe another consultation.

I'm no doctor, but just going by what was done for me. Good luck, and hope it turns out to be minor like an infection, which can cause the same symptoms.

Here is a list of the country's top comprehensive cancer centers (CCC). This can be very important even when in the diagnosing stages. Just remember, once a surgeon cuts there is no putting it back.

CCC list

Hi J,

Without a biopsy, it cannot be conclusively proved that it is OC. Swollen lymph nodes, different tonsil sizes etc. may be due to a bad infection.

As Paul mentioned, FNAB is an option and I fully agree with Christine - once a surgeon cuts there is no putting it back. So go for a CCC, all the best for results and yes there are long term survivors who will help you when needed.

Eshwar is correct... there are MANY long term survivors! The forum is full of them, I have even met a 32 year survivor. Over my years with OCF, I have seen many patients who had complicated cases and who were Stage IV get thru it. But thats getting way ahead of ourselves. At this point you do not know what you have yet so it may turn out to be easily fixed with a round of antibiotics. This could be nothing more serious than an infection which is making the nodes swell. At least thats what I am hoping for you. If its more serious and it would turn out to be cancerous, then you have found the best place for assistance, the OCF forum.

I suggest finding a CCC and taking it from there. You will want to get a biopsy then get your treatment plan if it is cancerous. One step at a time. It will probably take at least a week before you know any test results. Keeping busy will help you to not jump the gun and worry about leaving your family.

Best wishes!

Thank you all for your responses. I appreciate them. The reason I went to the second ENT was to see if there was a less invasive way to get answers, other than surgery. The first ENT simply told me that with the size of the left tonsil, the best way to know would be to remove it. We decided to just go ahead with a tonsillectomy. The first ENT never mention the lymph nodes, even though he gave me a neck exam just by touching. I was still unsure so I went to a second ENT a week later. This ENT was more focused on the lymph node(s) which came as a shock because the first ENT said nothing about the lymph nodes. The second ENT who said the nodes should come out alarmed me and I again did ask about an FNA. He told me the don't like to perform the FNA's on a node since it has been known to give a false negative or come back inconclusive. And he feels that with the tonsil and node being on the same side and both large, it is still best to take them out. Could this procedure spread cancer if it is there? I asked for blood work, imaging, anything less invasive and the ENT felt the surgery was the way to go. And yes, both spoke with me about HPV SCC so I imagine they suspect it. Thank you all again for your time. Can anyone tell me how theirs presented? What brought you in to the doctor?

I WOULD NOT let ANYONE do ANY surgery until you get an opinion from a CCC. IF you have HPV+ SCC (confirmed perhaps from a FNA only) then it's possible they may not perform any surgery especially removal of the nodes.

We have all been where you are. My husband and I had just adopted 3 children a year and a half before he was diagnosed. Three!!! We aren't what one would consider young, so we were panicking too, regarding the kids.
Try to breathe and stay adamant about your care. Be insistent on them moving quickly for an answer. You are your best advocate and you have to push for what you want. Maybe they can do a core biopsy of one of the lymph nodes before surgery. That is how they verified our scc. Ask about that. Tell them you don't want to wait.
We can tell you to stay calm, but reality is that isn't going to happen until you have the diagnosis of what is causing this, so just hang on tight to your kiddos and hubby and medicate to sleep!! Kidding about the meds...sort of. Please keep in touch with us.
Kathy

Blood work will not show if you have oral cancer. Im not one who recommends the FNA as it usually only has to be redone with a surgical biopsy. Did the second ENT suggest having a biopsy or was he another one to rush into the operating room?

It does sound like both ENTs are decent doctors and are on top of things talking about HPV OC. But, many times a surgeon will take out the problem area only to end up going back in for a bigger surgery. I think (Im not a medical professional, either is anyone else here) it may be a good plan to seek out yet another ENT who specializes in OC. I would ask for a regular biopsy then take it from there with finding a CCC to get a treatment plan. AT a CCC a whole team of specialists will all sit down together with your chart and discuss what is the best way to treat your case. While a surgeon always says surgery and a radiologist always says radiation this will help keep everyone on the same page and the patient will have a better chance to successfully get rid of their cancer. But all this isnt necessary if you dont have cancer. Im hoping you wont have to do any of this and a biopsy will be negative!

Hi Jolie. Hope I have your first name correct (obtained from your e mail address). Welcome to the best forum with dispenses great advice - you have heard that from the above posters.

We all know the overwhelming panic and worry that accompanies what you are going through now. For you - with young children - I would guess it is multiplied by 2 at least. I am so sorry that you are feeling this. The MOST important thing is that you are continuing forward and are on track to get a diagnosis. We all pray results are negative, but that will take some time to determine. Painful days, but while you are waiting - stay very busy and very involved with your kids. Schedule extra visits to the children's museum or some such. Allow yourself 20 minutes a day to worry. Go to the bathroom for your 20 minutes - scream, cry, whatever you want, then leave the room and leave those worries behind. Worrying about it will NOT change the outcome and always remember it is not cancer until the biopsies says it is cancer. Let us know how the surgery goes. Hugs to you.

Donna

The swollen lymph node brought me to the doctor. There is very little risk with the FNA, maybe slightly more with a surgical biopsy for spread. If surgery is going to be done, some don't like to do an FNA. I had probably 5 of them. I can see false positives after radiation treatment, which happened to me. As Ed posted, check NCCN guideline for work-up, diagnosis, treatment, follow-up, for the oropharynx or oropharyngeal cancer. Also, in addition too NCI, NCCN hospitals, check U.S. News Report Best Hospital's 2013, which ranks the the top hospitals in the county by specialty. Check for otolaryngology ENT and Cancer. Number one for ENT is John Hopkins, and number one for cancer is MD Anderson, and many others in the top 16. Many if these are on the NCCN, NCI listings too, and can link to the hospitals website, there you can see the types of treatments done, doctors backgrounds, and and further information on rankings in U.S. News report.

Hi J, to motivate you I am quoting a recent case similar to yours. You can read full thread here: http://oralcancersupport.org/forums...;Main=14823&Number=163757#Post163757

[quote=dkw]Hi All. Thank you "T" for your response above that I just saw. It's now been two weeks since my bilateral tonsillectomy and bilateral BOT biopsies. The ENT did "punch type" biopsies. Had bleeding twice from the right tonsil area; once back to surgery to remove the clot and cauterize it. The good news for now is that the biopsies of my tonsils and BOT were negative for cancer. I did have pus and inflammation left tonsil, where the rear of tongue pain started. Right now, the right side biopsy site I think is taking more than 2 weeks to heal, though I also must have a lesion or something mid-way right side of tongue after coming out of the 2nd surgery three days ago, as that hurts the most now. Maybe they pushed my tongue down against my teeth while cauterizing the right tonsil area? Also, developed a cold sore right side of lip right after the surgery. I am crossing my fingers. Now that I am aware about HPV oral cancer, any pain lasting more than 2 weeks can make me a bit anxious. I do need to try harder to learn from you all. I need to learn not to jump too way ahead and worry unnecessarily. As Christine and "T" says, first things first, and worrying is not a good thing. I will copy and print many of your wise words and keep them with me as a constant reminder. Again, thank you all for your support, your courage, your positive attitudes, and for your ever so kind generosity. [/quote]