My father was diagnosed with Oral Cancer a few months ago. They did a biopsy of his tongue, throat and gum. The only one that came back "bad" was his tongue. They removed 1/3 of his tongue this past week. He is doing great, or as great as he can be for missing part of his tongue. I went to the hospital for his surgery but because I live 5 hours away its not easy to talk to his doctor to ask the thousands of questions I have. Ive looked all over the internet to try to understand what my mother has been telling me about it but Im still so confused. He had a PET scan done and I was told his results came back 50/50. What does that mean? He had a lymph node(sp?) removed from his neck and we are waiting for the results. Just hoping someone can explain the PET scan for me while Im playing the waiting game. Thanks so much!

Hi there. I had similar surgery but they replaced the part of the tongue they removed with a bit of my arm, it looks very close to normal and functions that way too. The things you need to know - did they get clear margins? When they remove a tumor they're looking to see if they got it all - clear margins is an area around the outside of the tumor that has normal cells. If the margins aren't clear the would likely have to go back in and take more... You want to know if there is any perineural involvement - did the tumor grow into a nerve - this is an indicator if further treatment. You want to know the differentiation. Well differentiated - most like your own cells - generally fairly slow growing, moderately differentiated - a bit more aggressive, less like your own cells, poorly differentiated - very aggressive and least like your normal cells. This is also an indicator of more treatment - though with oral tongue cancer since it has a tendency to stick around I would push for aggressive treatment regardless.
Lymph nodes? They only removed one? If that's the case I would change drs ASAP. the minimum I've seen removed was 18 - with the average being 30-40 - this is also a good indicator of further treatment required. If one or more comes back positive they should and will likely push for further treatment. Or if there's ECE (extracapular extension) of the node where a bit of cancer has moved outside the node into the tissue of the neck this is also indicative of a need for further treatment..

Further treatment is generally radiation and chemo. Not fun but doable.

I have no idea what a 50-50 on a PET Means- I can tell you a pet uses a sugar contrast substance - your body uses sugar for many things... Healing.... During times of illness - and tumors are sugar hogs. So if something lights up on a PET - it could be cancer - inflammation, healing, or an infection. did they give him a PET after the surgery??? I had a CT scan after surgery - and prior to radiation (this was after my biopsy results were back. They did a chest CT - (this cancer can move into your lungs) - and a head CT to plot where to aim the radiation. (PET is similar to an MRI and CT, though apparently more accurate - but also notorious for false positives)
So maybe the PET was used to determine whether they should give more treatment (though this soon after surgery I'm not sure if I would trust it.) Ultimately the biopsy results should let you know for sure.
I'm assuming this is his oral tongue we are talking about. (the tongue in the mouth that you can see) - your tongue actually runs all the way down the back of your throat and often BOT cancer - base of tongue - has a different cause)
I would like to stress three things to you - if he's not at a CCC - he should be - regular drs are great but doctors at a comprehensive cancer center - are the best and see this cancer all the time. They would be best able to tell you what has to be done and you would likely get the optimal outcome. (though with cancer as you know there are no guarantees)
If they suggest radiation based on his biopsy - don't hum and haw about it. Do it - they're giving you the best chance to beat the cancer - its definitely not easy - radiation is directed at certain areas where they think stray cancer cells can be hiding - tumors generally show up on imaging devices (PET etc...) but cancer cells do not. And chemo is systemic so it's deigned to clean up any cells that may have moved outside of the radiation area (generally the head and neck)
Finally educate yourself. A well informed patient or caregiver - is most important - knowledge is power. Your mom being primary caregiver may not understand or take in much of what is being told to her (older people tend to just trust the drs, and let them handle it - that may be fine if you're at a top notch facility, with a top notch dr. But even then being in the know can't hurt because even the best make mistakes - )

Hopefully they caught this early. If they did then hopefully that's the end of it but tell your mom, dad, to keep an eye on his neck for swollen lymph nodes, or a rash of some sort, and have himself checked very regularly - take care and good luck!

Hi,
Welcome to OCF. You have come to the right place, even though I am sorry that you have to be here. I am not certain what the diagnosis of 50/50 means either. I also had about 1/3 of my tongue removed as well as several lymph nodes. One of the nodes was cancerous. They actually tested my lymph nodes while I was in surgery, so I didn't have to wait for the results. They also acted very quickly with me after diagnosis. I had my surgery a week and a half after I was diagnosed. I had one PET scan prior to my surgery, just to see if the cancer was anywhere else in my body, other than my tongue and my neck. I also had one about three months after I had completed my treatments. Do you know if he will be scheduled for radiation or chemo? You might see if you can contact his doctor by phone or even through email since you live so far away. I am sure you will get more replies to your questions. Good luck to you, and I hope you will get some answers soon.

Welcome to OCF! The question about 50/50 is something you should ask the person who told you about it. They should be more clear and make sure you understand what they are talking about. When a doctor is rattling off info dont forget its ok to ask questions. Unfortunately its very difficult for anyone here to interpret over the internet what part of a PET scan means. A doctor can look at the scan and also has the patients complete medical history where we (non medical professionals) have only a small part of your fathers info. If you have specific questions try writing them down and getting your mother to ask at your fathers next appointment. Oral cancer can be a difficult thing to understand especially when getting info indirectly. I would see if your fathers doctor uses internet, email would be a quick easy way to get answers to your concerns.

Best wishes to your father with his recovery.

Hi,Crumpsgirl!

As you can see already, you will have a great support system here and a wealth of accurate information. I wish for your father to have the best prognosis. Please keep us posted.

Great post, Cheryl! You should tuck that one away for safekeeping!

Dear Crumpsgirl,

Welcome to OCF! I�m sorry to hear about your father. You have gotten great advice from everyone so far. It is difficult to be so far away and not be able to attend your father�s doctor appointments.

One thing you can try is to see if his doctor will allow your mother to record each doctor appointment and you can submit some questions to be discussed. Most of my doctors allow me to record my visits since I often go by myself, and don�t want the hassle of taking notes. I bought a digital recorder and save the files on my PC so I can review them later.

I have no idea what his doctor meant by 50/50. I also request a copy of my medical tests, so ask the doctor to provide a copy of the PET Scan report.

Also I have found the OCF website to be the best source of information on oral cancer. Please take some time and review the information there � if is accurate and up-to-date.

Best wishes to your father for a complete recovery. Keep us posted and feel free to ask questions.