I just visited my doctor to receive the results of my PET scan and I'm rather confused.

My doctor showed me the PET scan results. There is a clear bright spot on my tongue where the cancer is, which we already knew. Two of the lymph nodes lit up as well with what he called "activity". One he said was borderline and very faint, the other was a little brighter. But, he told me that both of these were close to the tongue area, and could just be inflammation. He said the inflammation could be from the biopsy I had in late December, or an infection on the tongue tumor that he discovered today. My tumor has been in burning pain for the last two days so he said it might be a staph or streph infection and gave me antibiotics. So, those two factors might explain why those two lymph nodes had activity.

He said that the only way to be sure is to have a pathologist check them after surgery, scheduled for next Wednesday. Then, if one or both do contain cancer, then they have to see how the cancer is behaving and order radiation or a combo of radiation and chemo to stop the spreading.

Anyhow, I have to admit I was disappointed because I was hoping it was localized to the tongue and that it would be pretty cut and dried - stage II, solved with surgery alone. My understanding is that if indeed it has spread to one of the lymph nodes, that would bump it up to Stage III. If it is found in both, then it would be Stage IV.

I know that the odds dramatically decrease depending on the stage, so I'm very nervous now. I know that it's fair to say they won't know until they dig around in there and that the real diagnosis will come after surgery...but I'm still very scared about it.

I realize that a lot of members on this board do have stage IV and have beat it, so those stories are very inspiring to me.

The other question I asked my doctor is if it does turn out to NOT have spread to the lymph nodes, and surgery is done for the hemi-glossectomy and SND, how will they know that it was successful? But, he said they will never know for sure. Does that sound right? He basically advised that I will be checked up on very routinely but it's hard to say if it's really "beat" until it hasn't recurred for 3 - 5 years. I sort of assumed that if it is Stage II and they believe that surgery has removed everything, isn't there some point where they would run another PET scan and declare victory? He acted like that wasn't the case. But, that seems strange to me...wouldn't you want to be sure that what you did was successful?

Any feedback you have would be appreciated. Maybe this is normal but I just expected to have more concrete answers at this point and especially after the surgery is done. Could be wishful thinking, but in the back of my mind I'm still a little suspicious because it is an HMO and maybe they don't want to pay for another PET scan post surgery.

Thanks,
Gina

Hi Gina!

I was in a similar situation and your doctor sounds like he knows what he is doing.
Stage doesn't really mean anything in the long run. Many stage 1 and 2 have not survived. Many stage 3 and 4 have.
The odds are really 0% or 100%
I wanted to avoid radiation at all costs before the surgery, but when 1 node came back positive, (even though it was removed and encapsulated) the thought of a cancer cell roaming about was too scary, and I have a big fear of anything medical. I didn't want a recurrence. I only had to have rads.
PET scans are notorious for false positives too soon after surgery, so I wouldn't worry about that too much until the surgery is over and the results of your nodes are determined.
But I would for sure go for the rads if any are positive. Chemo is something I didn't have endure.

Oral cancer can be beat. Give it your best shot. Do everything you can to rid yourself of this disease.

Hi Gina,

Seems like you're diagnosis is very similar to that of my wife, and similar age as well (she is turning 34 this year).

We, like you were initially told that it was a small tumour, isolated and between a Stage I - II.

However, further scans showed that due to the location of the tumour, it was considered T4a & the involvement of multiple nodes ended up being a N2b.

In your case, I am suspecting they had already scheduled in a neck dissection irrelevant of the lymph nodes being affected, and hence have not scheduled in fine needle aspiration to check if those lymph nodes indeed are affected by cancer.

As per your doctors advice, the only difference the lymph nodes will make is how you will be treated after surgery. In the instance that they see perineural invasion, extra capsular spread or one or more lymph nodes affected, they will most likely want to include chemo in the mix with radiation to your regime.

Please remember that the staging is mealy a number - and every case is unique. My advice to you from now onwards is go and enjoy every single type of food you can imagine and go nuts because it will be a while until you will be able to enjoy food. Furthermore, you will have read throughout the forum that nutrition is the single most important factor once you start the treatment phase as it will determine how quickly you recover from the treatments.

I have documented my wife's journey in a separate post in the "Currently in treatment" section of the forum and would encourage you to have a read as from what I can gather, the cases are very similar.

Hope that helps

Jay

It happened to me after a tongue biopsy, a subsequent PET scan showed "activity", which ENT thought was caused by the biopsy, so a FNAB was still done by a pathologist, and came back negative. Unfortunately, I had the opposite side with with a postive node.

I'm not sure what surgery you are having in addition to the tongue, a FNAB or selective neck dissection, lymphdectomy, but often they do a triple scope, panendoscopy, with biopsy before surgery to check the other structures for possibble synchronous or metachronous tumors. HPV postive often originates in the Oropharynx, and the base of tongue can metastesize to the tongue, but it does originate elsewhere, and in the mouth, but not as often.

As mentioned, staging has an effect on treatment, so you will probably be restaged after surgery, and determination of need for neck dissection, if not already done, radiation and chemo. T1 or T2 can be trested with surgery alone, but oral cancer has propensity to metastasise to the nodes, even in early stages, and sussessful treatment of the oral cabity, also depends on management of the nodes. Oral cancer usually mestesise to levels I, II and III, but there can be skip metasteses.

Good luck with everything.

Gina, I know your head must be spinning right now. I know when I was first diagnosed it was a rough period for me. Just trying to learn all the medical jargon and wrap my head around the idea I was not invincible was hard.

I have seen Stage I patients died and many Stage IV patients survive. Ive been both. Yes, what your doc said is correct. Its not possible for the doctors to know if one teeny tiny cell which is much too small to light up on any scan or visible to the naked eye was missed. So once you became a cancer patient, you really never know if you are cured or are walking around sick. Thats a very hard thing for people to understand, especially when there are doctors who tell their patients "you are cancer free". When I first got sick, I spent 4 hours speaking to my radiation oncologist and his top nurse. We talked and talked and when I walked out of there I had absorbed an incredible amount of info. I finally realized that when I got cancer, I would always have it and it could come back at any time. That scared me to death. But I also realized that there was not one darn thing I could do about that situation. I had a choice, I could sit around paralyzed by fear of the unknown or move on with my life and make the most of every day. Nobody is promised to have a tomorrow. I learned to stop procrastinating and stop worrying about what the future holds. All of this took alot of time to learn. It really sunk in when I was diagnosed with my third round of OC in 2009.

PET scans are known for false positives. It could be cancer or it could be just an inflammation. Will they be doing any further testing of the nodes? Since you had nodes light up your doc should be doing a neck dissection to removed them. The disease will go down the line if it has spread to the nodes and your doctors can remove them and check. Most times if the first couple light up, the doc will take several more to be safe.

The very best things you can do is to find the best medical care you can, be your own advocate, learn about your disease, and put your trust in your doctors. A patient who has no hope will have a more difficult time. There have been studies about positive thinking. It really does help the patient by thinking positively.

Hang in there, Gina! We are all in your corner rooting for you

Hi there... Your dr. is right. And seems to be on top of things. I had my biopsy on dec 10, 2010, my diagnosis, dec 20, 2010. I had 2 CT scans show that it was localized on the 21st, (1 chest, 1 head and neck) I had christmas break where I could feel a lymph node pop up in my neck right under my jaw bone, This was around the 31st. On January 6th, 2011 I had an MRI. Results... still localized despite my feeling the lymph node - which was the size of a quails egg. On February 4th I had a hemiglossectomy, and a neck dissection where they removed 40 lymph nodes. Guess what... one was positive! Without a biopsy your doctor has no way of knowing for sure.

My cancer was well differentiated in my tongue, to moderately differentiated in my node. This is low to medium when used to describe aggressiveness.

Despite my dr. being certain he'd gotten it all (not a comment I took lightly as he is tops in his field) I was grateful he decided to send me for chemo and rads. I did have ECE (extra capular extension) this is one of the factors he used to determine my next course of treatment. Rads is no picnic. Frankly it sucks, and is scary, and has awful (but manageable) side effects - if you know what to expect up front. However, I would rather be safe than sorry.

I totally agree that unnecessary treatments are a burden - but for me unnecessary is a word that applies to something that is NOT life threatening. Where cancer is concerned, do what you can from the outset because you may not get a second chance.

hugs and take care and most importantly try not to freak. Staging is a medical term used to determine size etc... do not let it affect your outlook. Do what you have to to beat this because for you it is - as others have said - either a 0 or 100 percent chance of survival. Your fight is your own and outcome will not be determined but the outcome of others.

Hi Gina,

As others have said, a PET doesn't determine diagnosis, but is a tool to indicate possible cancerous areas. My original PET showed one probable and another possible cancerous node. Out of 35 lymph nodes removed and biopsied, NONE were cancerous!

When removing the tumor on my tongue, my Dr said most margins were very good, but the cancer has started to spread over toward and up the gum in that area so the margin was not what he wanted. However, all margins were clear. That and no node involvement meant no further treatment for me.

Take what you KNOW and make your plan for fighting that. After surgery and pathology, you will know what else is, or is NOT involved and can change your plan then if needed.

After recovery from surgery (and other treatment if needed), you will have frequent follow-ups, and scans. Yes, a clear scan is a relief, but don't worry in the meantime. There is nothing you can do about it so go on with your life and enjoy it! As others have said, there are no guarantees that any of us will see tomorrow, cancer or no cancer!

Hang in there! Concentrate on preparing for surgery and recovering from it. Worry about anything else IF it comes up.

:-)
Teresa

Hi Jay - thanks so much - I will definitely check out your other thread. Also, you are correct, they had already planned to take out those lymph nodes any way in the neck dissection, so it didn't impact my treatment plan. As you mentioned, they need to study them carefully after the pathology report and then decide on the best course of action after that. I'm very glad to know that your wife's treatment is complete, I'm sure that's a relief!

I have been studying nutrition a great deal as I know how important that is. My husband just bought me a Vitamix so I can make soups for myself and he is also a great chef, so I'm lucky to have him helping out!

Thanks,
Gina

Gina, welcome. Sounds to me that you're in good hands with your medical team. In many cases, mine included, after successful surgery they radiate the entire area to ensure that any microscopic malignant cells are killed as well. So that may be something they'll discuss with you. Radiation as you know is no picnic, but once they do the surgery they'll have a better idea, and about possible chemo too.

Oh and the nutritional liquids, Ensure and the like and the very high caloric stuff you can buy online, I forget the name right now but someone will weigh in, are great for keeping your weight up if you can't eat solids. I was on the stuff for 6 months and actually grew to like it so much that I have it once or twice a week still.

Every good thought headed your way for next week!