I made it 2 1/2 years without having to deal with this. Thought my first surgery in May 2010 @ MD Anderson in Houston got it all. The doctor said clear margins and the scans showed nothing. It was originally under the bottom of my tongue on the right, don't remember any of the numbers size etc but it was not large. In January 2013 I noticed my right side neck had a swollen lymph node. Had some tests, PET Scan etc. The lymph node was necrotic and a PET Scan showed cancer there and in my left tonsil and possibly my left lymph node. My surgery is scheduled for March 8th and I am having my tonsils removed, the right side lymph nodes removed and an excision biopsy on my left lymph node. Assuming the left comes back positive the doctor will do a neck dissection on the left as well. I would guess that I will have to have radiation and chemo. I avoided radiation and chemo the first time, maybe I should have done it then and I would not have it now..... It is not HPV related. I have read some blogs that make this a not so pleasant experience. The first time was no fun either.

Welcome Teejay. Hopefully it is not cancerous, and PET scans do have false/ positives in the range of 10-14 percent, maybe higher in certain structures, including the tonsils, BOT which are rich in lymphatics. If it is cancerous, the BOT could have been the primary, which can progress to the tongue, but lesser the other way around or even metachcrounous or synchronous cancer due to carcinogen exposure. Just curious if you are a non smoker drinker, if not HPV related. They will probably do an triple scope, panendoscopy, while under anethesia before surgery to check your upper aerodigestive tract for any lesions. Surprised they did not do a FNAB, with sonogram guidance, for the suspicious lymph node to confirm cancer, but did hear of then doing the procedure such as yours, this way as not to disturb the lymph node as much, being surgery is likely. They usually like do do chemoradiation with 6 weeks following surgery, depending on your healing, or otherwise keep the "total treatment package" within 100 days for best results.

For me, surgery was the easiest, including the three neck dissections, followed by radiation, and chemo was the worst, due to my negative reaction, but everyone is different for a number of reasons.


Good luck with everything.

Teejay, welcome to OCF! So sorry you have joined this group, especially due to having a recurrence. Ive gone thru oral cancer 3 times myself and know its no picnic.

Please try not to second guess your original treatment plan. You were cancer free for a long time (2 1/2 years is a long time!). If it was a case of something being missed with that surgery, it probably would have popped up by now. You are being treated at one of the countries top cancer centers, which is excellent. I still would recommend having a second opinion at a top cancer center to hear what their team would say for a treatment plan.

Before you begin, make sure to have a full blood count done including thyroid. This is very important as most patients will end up taking thyroid meds down the road (myself included).

Anyone who offers to help, write down their name and number. Tell the person you will let them know what they can do when the time comes. Now is not the time to let pride stand in the way of getting people to help. You will need help, everyone does so get used to the idea of having helpers. Its a hard idea to adjust to for some, as they are very independent.

Make sure you go for a complete dental check up. You will need dental trays for flouride made and any questionable teeth removed now.

Right now eat everything you can and try to bulk up a little. Dont be concerned about gaining weight as most patients lose weight while going thru rads.

Wishing you all the very best with everything you are facing!

Hi there and welcome... best of luck on your up coming treatment keep us apprised. There's a lot of information here. best of luck.

Thanks Paul, I neglected to mention they did a cat scan guided needle biopsy so there is cancer definately in my right lymph node. And there is cancer in my left tonsil, the only question at this point is if there is cancer in my left lymph node. I have had blood tests too although I don't know what they were testing for.

Thank you ChristineB

Thank you Cheryld

Thanks for the info. Sounds like a needle core biopsy, which takes a larger tissue sample. The BOT has high propensity to metastases to the lymph nodes due to being highly lymphatic, even bilaterally, especially when invading midline of BOT. the blood tests may be pre-surgery clearance. There are really no bio markers for H&N cancer, but could be be checking other indications of inflammation, body is fighting cancer. There are biologic changes with cancer in H&N, and can be checking that too.. I even had a CA125, tumor marker test, which is more for other types cancer, ovarian, but MO did it after saying my levels should go down after the lymph node removal in my neck. Take care.

Well I had my Radical Neck dissection / tonsillectomy and excision biopsy on my left lymph node March 8th @ Georgetown. Doctor was Bruce Davidson and in my opinion a very good doctor. I saw a radiation oncologist @ Georgetown yesterday and have an appointment today @ 2pm with a dentist who specializes in head / neck cancer patients for any work required before treatment. I am told I will have chemo also and my appointment with the hematologist is on April 4th. I am told I have clean margins with some doubt about the top of the jugular, which was removed on the right side. I got out of the hospital on the Tuesday after the 8th, coughed up blood that following Thursday and spent until Saturday back in the hospital. I had an ICV filter put in my right groin and go on blood thinner lovenox this Saturday. What fun this is. I go back to work on the second of April and will try to work through the radiation / chemo. Don't know how that might work will just have to see how that goes. My family has been the best, went with me to every appointment and one of them stayed with me in the hospital. You find out a lot about your family during these kind of things.

Teejay

It is hard not to second guess the first treatment when the cancer does come back. At least it was for me. I remain convinced that if I only had had Carboplatin instead of Erbitux, along with the radiation, it would not have come back.
Georgetown is a CCC and also one of the handful that will treat a patient with radiation three times, that is how good their radiology department works. I have been very happy with Dr Razavi, the prothodontist recommended by Georgetown and am off to see him today. He managed to keep all my teeth these last five years
You got out of the hospital much faster than I did. I was in for 12 days, due to not being able to swallow and needing a feeding tube put in.
Godspeed your recovery
Charm