Hello, I am 54 and was diagnosed with left neck SCC with occult primary, T0N1M0 6/25/13. I had a tonsillectomy 8/9. The biopsy of the tonsils was negative. The cancer was only in my lymph node(s) as far as the could see. They cannot find the primary. At first my oncologist recommended surgery and possible radiation. Then my ENT said chemo and radiation. I was in the process of moving in the middle of this and was able to get a second opinion from the doctors I have now. They also suggested chemo and radiation. I am T0N2bM0 Stage IVA, Whatever all that means. I have had three molars removed 8/30, but have had to go back to the oral surgeon several times to have bone smoothed down and gums stitched up. Treatments have been put off a few times. Now we are scheduled for 9/30 if the mouth is healed enough. I hope 10 days is enough time. I have seen photos of osteo...necrosis and I certainly don't want to have to deal with that. What damage should I expect from rad. and chemo? Should I have had surgery? Sorry I went on and on. Any positive feedback would be great. Thank you, Calhoun

Welcome to OCF, Calhoun! Please take a couple minutes to review the messages I have sent you. Look towards the middle of the page near the top next to the tab titled "My Stuff". Click on the tiny flashing envelope to get your private messages (PM).

You have found the best place to get info and learn about your disease and how its treated. Educate yourself so you know what to expect and how to advocate for yourself.

Here is the link for the Main OCF pages. There you will find all the info you are asking about. There are sections for treatment, radiation, etc. Of course we are here to help you along.

Right now you need to focus on eating everything you like and not worry about gaining weight as you probably will lose some during treatments. I know your mouth is probably sore from the teeth being removed but push yourself. Get a hearing test, full bloodwork including thyroid and testosterone. Line up helpers. Nobody gets thru this alone so anyone who offers to help, write down their name and contact info. Tell them when the time comes you will call on them. Call the American Cancer Society, ask for a driver to take you to rads, and either $300 towards travel expenses or in the form of a pharmacy voucher (its ok to use for co-pays).

Two important things to remember thru all of this are everybody is different and will respond in their own unique way and the only thing you can control is your intake. Every single day you need a minimum of 2500 calories and 48 oz of water.... NO SKIMPING! If you skimp one day and think its ok you will make it up the next, you are wrong and will quickly fall into a cycle which can lead to dehydration and malnutrition. On chemo days and the few days afterwards push extra water to flush the poison out of your kidneys.

When treatments begin, pay very close attention to your hearing. If you notice even the slightest change inform your doc immediately. Cisplatin (very common chemo for OC patients) is known to cause high frequency hearing loss which is permanent.

Hope I didnt overwhelm you.

Best wishes!

Hi Calhoun, sorry about your diagnosis but glad you found us. TO = No evidence of primary, N2= spread to one node greater than 3 cm but less than 6 cm, and MO = No distant spread beyond head/neck. Do you know if you the node showed HPV+? HPV cancers are generally more responsive to treatment. I know there are a few folks here who had unknown primary cancers and they will have more insight.

Good luck to you!

Forgot to add, your dentist should make you fluoride trays now. Mine also made guards I wear during radiation to prevent rads from bouncing off metal fillings and hurting nearby tissue.

If you are female, this is a good time to get a mammogram because radiation will make those unreliable for at least a year following treatment.

Thank you, ChristineB and Mamacita. The node showed HPV neg. I am going to take cisplatin (3x) and rads 7 weeks. Am I better off without the surgery at this point? How likely am I to losing my saliva capabilities? It has been almost 3 mos. from my diagnosis, and no treatment yet. Will the cancer spread soon? I had a second petscan on 9/18 which showed it is still just in the node. What about supplements during treatments. Too many questions- Calhoun

I'd alert your team to the possibility that the primary tumor (which, as I read it, they have been unable to find) is located in the base of your tongue.

I went through a 60 day delay myself because they were unable to locate my own primary, which as you may have guessed, was in the base of my tongue.

CT scans did not show it, but the PET did. Perhaps they might run a PET on you with emphasis on that area (BoT).

If your cancer is HPV related, it is probably very slow acting and has not spread appreciably since your diagnosis.

Question: Is your state a Medical Marijuana state? If it is, I'd also recommend getting a card ASAP. Cisplatin will introduce you to nausea.

Other than that, I echo everything ChristineB said.

Hey Bart,I also live in the panhandle. I'm having the chemo in Sandestin, and the radiation in Panama city. I have to drive from one to the other on the days of chemo and radiation. Radiation days will be a lot less driving (about 15 miles each way). Will I be able to drive for most of this?

Most of us were not able to drive thru the whole thing. As I mentioned before.... everyone is different. You may be lucky and be ok to drive for most of it. Line up the helpers now so you dont have to worry about this down the road.

I hope you have a caregiver. If not thats another thing you need to find prior to starting.

Best wishes!

90% of unknown primary or occult primary, is in the oropharynx in the tonsil, mainly lingual or palantine, and base of tongue, as Bart mentioned. For OP usually a tonsillectomy is performed, sometimes bilaterally, including a neck dissection on the positive node finding side. Also as Bart mentioned a PET/CT scan is done, and a panendoscopy, under anesthesia, with biopsies. which was probably done during yout surgery.

The Tonsil, and BOT are difficult areas to detect with all the crevices, and the BOT more so due to its deep musculature, and both likely to metastasize due to the lymphatic tissue, and the tonsils are part of the lymphatic system.

There are several thoughts of unknown primaries, one if it was HPV related, it is usually small, and the nodal metastesee grows larger faster due to the blood, nutrients in surrounding tissue. The primary is small, undectsble by any scans or was missed in the biopsy. Another is when the primary metastasises, it takes all the nutrients, and blood with it, and primary dies off, and if HPV related, the body could have fought of the disease.

Most likely they will radiate the oropharynx as if the primary was there, in the waldeyer ring.

Good luck.

[quote=calhoun]Hey Bart,I also live in the panhandle. I'm having the chemo in Sandestin, and the radiation in Panama city. I have to drive from one to the other on the days of chemo and radiation. Radiation days will be a lot less driving (about 15 miles each way). Will I be able to drive for most of this? [/quote]

I drove to all my appointments (24 miles each way) for chemo and radiation (and everything else,) but I suspect that my case was unusual. I was never bothered by the radiation, not even post-tx; but as I said, my case is probably an outlier.

I did have to keep a sharp eye on both the traffic and the side of the road, looking for a safe place to pull over and heave if it got the better of me because I was nauseated to the eyeballs at all times.

As ChristineB suggested, line up some helpers to drive for you when you aren't feeling up to it. I hope your experience mirrors my own, but I sure wouldn't count on it from what I've read here.