Not sure why I didn't join when I was first diagnosed but here I am. Now I am faced with another challenge, post radiation neck dissection or not.

here is my story:

I had 60 radiation treaments, twice per day, don't remember the per session dose. Also had cisplatin once each week. I did not get a PEG tube. The week after radiation treatment I went to GI for PEG but was talked out of it. Instead I was hydrated every day for 3 weeks at my oncologist. I didn't eat any food for 3-4 weeks and lost about 30 pounds. I have gained 10 pounds but have limited diet and no desire for food. Everthing tastes salty.

Now 8 weeks out my lymph node has decreased from 4.5 to 1.5cm and ENT wants to do a neck dissection. Even radiation oncologist who fought against dissection now thinks it's the prudent approach. I am hesitant to take on more complications from dissection.

I have no confidence in this ENT and am seeking a second opinion. The ENT was unable to see the primary tumor and was OK to stick with an occult diagnosis. The whole original medical team somehow missed the visual and PET scan indicators. Fortunately I have a friend who is an oncologist and he introduced me to a radiation oncologist who is an expert in head and neck. This doctor read my PET scan and examined my throat and told me he was 80% certain the primary was at base of tongue. He then showed me the PET/CT scan, I had the disk, and pointed out the asymetrical light pattern on the left side of tongue vs the right. Then he called the ENT and instructed him where to biopsy. Sure enough that's where the primary was and it was HPV 16 positive.

So now 8 weeks out, the radiation oncologist thinks the lymph node should be removed. I saw the ENT and had a CAT scan. No surprise the secondary tumor is still present but has shrunk. Surgery is scheduled for April 5, 2011. I asked for a PET scan and that's scheduled for March 21. Second opinion is scheduled for April 8. My guess is the PET scan will show no metabolic activity but since a tumor exists the smart money is on dissection. I was thinking to take a watch and wait approach and not remove the secondary unless a PET showed metabolic activity. But maybe by that time it's too late and that's what the doctor's know.

So I am changing my mind about the neck dissection and thinking that the real problem is no confidence in ENT. Maybe a surgeon who can do a neck dissection in their sleep is better than a part timer.

your thoughts. John

John..where are you in Florida? You need to get yourself and your scans and biopsy to a Comprehensive Cancer Center for a multidisciplinary approach to your diagnosis and treatment. I would highly recommend Moffitt Cancer Center in Tampa. There, you have a team of doctors working together to formulate their best suggestion for your next step. I think I would want their opinion before you go for surgery. You might even decide, if they do suggest a dissection, that you want it done there.

Please consider this. You will be seen by doctors who handle head and neck cancers every day instead of once in a while. There is a phone number on the Moffitt Cancer Center website for the head and neck clinic...please call them a make an appointment for a second/third opinion.

Best of luck,

Deb

Hi John! Welcome to OCF. I agree with Deb, go to a cancer center right away. You should not distrust your doctor, that is not a good relationship to have. Here are links to the top US hospitals and cancer centers. Best of luck!

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Deb and Christine both gave you excellent advice... not trusting your doctor is not a good thing. Go somewhere that deals with this type of cancer - regularly.

Best of luck.

John,
The secondary node was rather large so a post TX "Selective" ND to remove the remaining "still rather large" mass, tends to make sense to me.

Keep in mind that a PET/CT is a diagnostic tool that has limitations and at 8 weeks could show a false positive or false negative.

Most important is to have a surgeon (or team) well experience in ND surgery.

My ENT assisted when I had mine, but the lead surgeon was an elderly prof who arrive late with a few med students in tow.

It wasn't painful - but left a wicked incision that is now nearly invisible.

I would think, and hope, in your case that unless something unexpected shows up on the PET they will just go for the large node and not open you up for an exploratory. If so, in the hand of a skilled surgeon it should go well - but, ASK!