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.

This is the my Final Pathologic Diagnosis after my Tonsilectomy.
Left posterior lateral tongue biopsy: SQUAMOUS MUCOSAL PORTION WITH FOCAL EPITHELIAL HYPERPLASIA AND UNDERLYING SKELETAL MUSCLE WITH MILD INFLAMMATION. Labeled ' left posterior lateral tongue biopsy' and consists of a 0.6 x 0.5 x 0.3 cm oval portion of tan soft tissue. The specimen is submitted in toto in cassette 1A. NEGATIVE FOR MALIGNANCY. BOTH RIGHT AND LEFT TONSILS, NEGATIVE FOR MALIGNANCY (NO SIGNIFICANT HISTOPATHOLOGIC CHANGES). I guess this means there is no primary. Also, what would the likely GY of radiation should I expect.

You will probably get between 70 and 72 gys, appx 2 each session.

As everyone will tell you all of us can react differently to this Tx but MOST of us especially with the 3 Big Bag Cisplatin method do relatively Ok until the 2nd chemo and then it goes down hill until the 3rd week POST TREATMENT when we call it "walking out of the tunnel". BTW most of us suffer the greatest in the few weeks post Tx. I only mention this in case it happens to you because I want you to know that it's perfectly NORMAL if it does.

AS Christine has said do get tons and tons of calories and hydration each and every day. Tis can make such a positive difference in your Tx experience.

Do get all the blood work mentioned. Do get the trays made and start using them asap.

And most importantly do ask us any question you may think of.

I didn't see a biopsy of the right posterior tongue, unless omitted? The BOT can go to both sides of neck if cancer was close to the midline. As David mentioned, you will probably get around that range 70-72Gy, some other areas lesser.

Other base-line tests before treatment is an eye exam, hearing test, TSH, hemoglobin and creatinine, the last two are on the CBC, complete blood count, which is taken before chemo infusions.

Good luck.

My mouth is healing up fine now, a few stitches are left. I go to see the RAD ONC on mon. 9/30. He will look at my mouth and determine if we can start RAD that day. If so, I do that and then go and start chemo (cisplatin). First of 3. About the trays, start using them before treatment? or first day onward. I have had all these delays and too much time to think. Should I have the lymph node removed? Size is 3cm. Will I have to have RAD and chemo also anyway? Would it be less damaging treatment after surgery?

Start using them now... It can't hurt... if it's HPV related cancer you may not have to have the node removed, since rads and chemo work well against this type of cancer. Best of luck...

Thanks, Not HPV, or can that be gone as primary. Can't wait any longer.

His node tested negative for HPV (see his 2nd post) and he has an Occult Primary so his treatment should be as aggressive as possible.

I used my trays starting 1 month pre Tx, during Tx for the most part and for 5 years post Tx.

You need quick and thorough treatment. Because it is non HPV the node should be removed unless it is very small, and you should then have rads asap - they may forgo the neck dissection in preference to having you start radiation. My one concern with that is if the radiation doesn't kill it you are in for another surgery, and if it persists then you may not be able to have more rads this close to finishing your other treatment. Having surgery, while NOT fun, was some comfort to me as I knew that most or all of the cancer was gone post op, then rads and chemo (hopefully) swept up the rest assuming there still was some present.
With an occult primary - you said you were biopsied on your left lateral tongue, but got inflamed tissue. I would wonder if perhaps they didn't go deep enough. My first biopsy was similar to yours and sure enough the tumor was actually either deeper than the area removed, or the guy didn't remove the correct tissue. If you've had a scan and there's nothing then that's great go with rads and push push push for soon.

best of luck.

I am supposed to start RAD & CHEMO Monday 9/30. The node is 3cm, the doctors don't want to remove it. Is that right? Seems to me surgery would eliminate the majority of the cancer. I only have a few days to decide. I need to know what is the best plan.

Please remember we are not doctors of any kind much less throat cancer docs so it's best to listen to your team at Moffitt in matters such as this.

Its important to add a signature. It greatly helps us to help you without having to go thru every post you have written to figure out your situation. Please take a couple minutes to review the message 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). Detailed instructions on how to make a signature are included in the link in the PM.

Thank you!

The lymph node will be included in the radiation field. Most times this will be all that is required. Should the node light up on the post treatment plan then they can do a neck dissection. This is what happened for Kris. He had a modified radical neck dissection 5 months post rads to remove a lymph node that lit up on the PET. Pathology just showed a necrotic ( dead ) node with no evidence of cancer. Be guided by your team at Your treatment centre.
Tammy

That should read - if the lymph node lights up on the post treatment PET.
iPads!
Tammy

I start my chemo/radiation on Monday. I had fluoride trays made and are using them now. I have 2 silver fillings still in my mouth. It is too late to have them replaced now. My RAD OC said there would be no problem with the fillings. I have been reading different stories. Should I have trays made to use during treatment? What material would they use? Is it too late after the first treatment? What can I use before the trays are made? Wax?

Teeth cleaning or anything that may cause cuts, abrasions, to the gums should be avoided, right before, during, and maybe a few months after treatment. Check with your Radiologist for more specifics. Even flossing if causing gum bleeding, should be ceased and infections can enter the blood stream from these little cuts. Fillings can cause radiation scatter, if in the radiation field, causing more radiation effects, but your doctor knes best. Mouth guards are usually molded latex, made before treatment, mask, so it can be form fitting, but heard of someone's radiation oncologist making a quick fix with wax.

I'm not an expert with the dental trays for fluoride Tx. which is different than mouth guards, but believe they should be used from day one. Good luck.

Calhoun.... PLEASE add a signature!

Here is a repeat of the previous post with info to help you with the signature.

Its important to add a signature. It greatly helps us to help you without having to go thru every post you have written to figure out your situation. Please take a couple minutes to review the message 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). Detailed instructions on how to make a signature are included in the link in the PM