hi everybody, my name is Tommy. On Thursday, we were told by the doctor that my mom is diagnosed with oral tongue cancer after a biopsy performed on her the previous day. The report currently says she has at least squamous cell carcinoma in situ. She also went through a scan on her throat Sat. to see if the virus has spread. She is scheduled to go under surgery this coming Thursday.

Can someone tell me what to expect? Can the biopsy tell what stage the cancer is? How do they find out? The surgeon said she only needs to go through surgery for this. Is that a good sign? Does she need chemo or other treatments?

I am so nervous and in search of answers. I have been having numerous break downs, afraid of losing most beloved person in the world, Mom. And knowing the fear she must be going through. Please if you know anything I would truly apprecite it so much! thanks!

Tommy,

I'm sorry to hear about your Mom.

I had tongue cancer and only surgery. I didn't have radiation or chemo because the cancer had not spread to the lymphnodes. I did have ND to make sure there were no cancer cells hiding. I also had a CT/PET Scan to see if there was any cancer in my lungs and throat.

Her Dr. will tell her what stage when he gets the results from the biopsy and after surgery.

The surgery I had was not as bad as I thought it would be. I know the worry is there I worried myself sick.

Stay strong nothing is going to happen to your Mom. Sounds like she caught it in the early stage.

Take care, Keep us posted.
Connie

Hi Tommy. Welcome to OCF! I know right now seems so difficult for both you and your mother. It will be a long road but your mom can get thru this. You are in the right place for support and info.

The doctor should be able to tell what the stage is with a combination of the biopsy and a PET or CT scan. Is your mother being treated at a cancer center? Has the doctor told you how much of her tongue they will need to take? Has your mother had a second opinion? Sorry for asking so many questions. It helps us to understand your mom's situation better and makes it easier for us to give you guidance.

Best wishes to both you and your mother.

Hi Tommy try not to worry - it's a scary disease - for you and your mom - but she'll get through this - I had tongue cancer - but did have chemo and radiation too. It all depends on how advanced the cancer is and a few other things - your mom should join us - especially if she gas questions. And she should get a second opinion. And be seen at a cancer center... Good luck! And take care and try not to worry.

Thanks for the support everyone!

My mom has gotten a 2nd opinion from another ENT and her primary doctor. But she is going with the one that did the biopsy on her. She's going to undergo surgery at a hospital (Flushing Hospital in New York), I don't think its a cancer center. Its going to be this Thursday which is the earliest time. Should we look at a cancer center? It will lag out the timing longer in order to switch surgeons and hospitals while we're trying to get it done as soon as possible. Should we look at a cancer center? She is being strong, but i know she is frighten from waiting

Shes been saying she feels numbness on her left cheek (cancer found on the side on tongue) and she's always tire. is this normal? I am so worried for her.

sorry the hospital is new york hospital queens. and they do have a cancer center within it.

Dear Tommy, You are getting wonderful information and support from a few of the many knowledgeable people on this forum. These survivors also have the most amazing and positive attitudes of any people I know. If you read other posts they have made, you will find many answers to your questions and, maybe more importantly, some advice that will help quiet your fears.

Waiting is truly difficult. Please try to distract yourself with things you enjoy doing to help take your mind off of it. Also, spend time doing things with your mom--it will help distract both of you. That way, you can really enjoy time with her before she is launched into surgery and treatment and life becomes busy.

Try to remain strong and remember to breathe! It is hard on a person to be worried and afraid all the time. Try to let go of some of the fear and worries--they have no useful purpose and can rob you of energy you will need to help your mom get through surgery and treatment. It is a lot to digest--getting an oral cancer diagnosis and then all the plans that follow. But, in a short while, your shock and fear will be replaced by a resolve to help your mom get through treatment. You will know more and you will probably find comfort in knowing what to expect. You will both get through it. Try not to think too far into the future. Take one step at a time and try to handle things as they come along.

Keep coming here for support and for answers. You are now connected with people who understand and can help guide you. Please keep us posted on how things go with your mom on Thursday.

Sending wishes for peace to you and positive thoughts for your mom,

Sandy

Hey Tommy,

Sorry to hear of the news. I couldn't imagine the feeling seeing my mother getting what I had. I'd much prefer to be in my shoes fighting it myself.

What others have said already is great advice though. It looks like she's been diagnosed very early if they aren't doing radiation/chemotherapy. I'd been to local doctors 3 or 4 times with my 'ulcer' over a 4-6 month period before they finally did the biopsy . That was almost certainly the difference between me catching it early and preventing the spread. Unfortunately by the time they sent me for a biopsy it had spread into my neck.

It's never good news if you've been diagnosed with cancer. But it's extremely positive that she's caught it quite early by the sounds of it.

All the best mate,
Dave

Tommy,

Without knowing everything if I were your Mom I would get another opinion from a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htm
before I would receive any Tx. One thing you posted above really concerns me and that is ...."we were told by the doctor that my mom is diagnosed with oral tongue cancer after a biopsy performed on her the previous day." I have never heard of a bio turnaround that fast at a local ENT's office. Most take 2 weeks to come back so I seriously doubt THAT bio could have been confirmed in one day. Another thing that concerns me was your statement...."The report currently says she has at least squamous cell carcinoma in situ. She also went through a scan on her throat Sat. to see if the virus has spread. She is scheduled to go under surgery this coming Thursday. Again I have never heard of any cancer doc use that term "at least SCC". Never seen 2 different cancers in the oral cavity at the same time. Re the "see if the virus has spread"...the only virus associated with SCC is HPV and IF she has cancer and IF it's HPV related it doesn't spread within the oral cavity but usually to a node or two which could only be detected with a PET or another sophisticated scan which I'm not sure she had since you only mention the word scan.

Anyway IF your Mom does have SCC then she needs to get the best possible treatment options available and she stands the best chance of receiving that at a CCC.

Hi Dave, sorry that was my mistake on the results for the biopsy. It was a week. I am so nervous I really wasnt thinking correctly. I am a bit calmer now so i will list the steps.

Biopsy test - 6/9

Results came in - 6/16
(SCC in-situ, but my mom is seeing another white spot inside her mouth that they didn't do a biopsy on, is that related?)

Scan on the neck with IV injection - 6/17
(can some1 tell me what this scan is called?)

Appointment with doc. on treatment - 6/22

Surgery scheduled - 6/23

Thank you all for the support!

Agreed Tommy - i understand the rush to get it out - I too felt the same way. BUT it's important they get it all. Usually biopsy results take at least a week. A thorough biopsy at least will take that long, because they cut the tissue into microscopic pieces and examine them. sounds easy but there are usually a bunch of biopsies done daily - and other people are waiting for results too.

Also I agree with what David said with regards to going to a cancer center. The dr. May go in And remove the tumor - however if he doesn't get it all - she'll have to have another operation at a later date. this cancer can be tricky because it can spread to the lymph nodes in the neck - not to scare you but - cancer centers are experienced at dealing with this kind of cancer. They can predict based on Experience - where it can travel - and Therefore where to look for it and hopefully how to stop it's progression.

Usually prior to surgery they do a biopsy, give you the results, then send you for bloodwork, a ct scan, an MRI - then you see the specialist (In my case it was a surgical oncologist who specialized in head and neck surgery)- who will decide your treatment - he booked my surgery and performed it. Because my tumor was a fair size 2.4 cm x 1.4 cm deep they also grafted a piece of skin from my wrist to my tongue. This was a 10-14 hour surgery.
Plus despite having a clear ct scan of my neck they removed 40 lymph nodes and found cancer in one. I also prior to surgery met with a radiation dr. Who told me that depending on the results of my second biopsy (one they perform on the tumor they remove) I may or may not be offered chemo and radiation. In my case I was - for two reasons which I won't get into,

Now your mom may have a superficial tumor on the side of her tongue, but there are people who've had smaller cancers but it's still been found in a node or two, this is why someone who deals with this cancer is so important.

I guess what I am trying to say is - there are a lot of steps that people go through prior to surgery and treatment for this cancer - it seems like what your mom has had done prior to the decision to go ahead with surgery seems to be lacking. Either that ornyou you don't know everything (which is possible because as parents we sometimes like to protect our kids) or not everything was checked out properly.

My suggestion is - print off all of these replies and give them to your mom - let her read them over. That way she can make an informed decision. We all want the best care when faced with something like this. Fast isn't always the best though speed is important.

Best of luck and try not to worry - it's very possible it's a very superficial cancer In Which case a quick surgery will take care of it. But that decision should be made at a place that is used to dealing with that type of cancer. Take care.

this is more updated. while one ENT say my mom didn't need a CAT scan. another did recommend it. are there any other scans she is missing out on?

Biopsy test - 6/9

Results came in - 6/15
(SCC in-situ, but my mom is seeing another white spot inside her mouth that they didn't do a biopsy on, is that related?)

X-rays on the lung area - 6/16

CAT Scan with dye - 6/17

Appointment with doc. on treatment - 6/22

Surgery scheduled - 6/23

can they tell what stage the cancer is from just the biopsy?

if the report from the biopsy says in-situ, is that reliable to think its early stage? or do we have to wait for results from the CT scan?

Tommy,

When I had my surgery spots were taken from my inside cheek. I never saw anything before surgery but I really didn't look. When I was sick I lost weight too, but I sure did put the weight back on after recovery.

How long has she had the lesion on her tongue? Is the surgeon taking any lymphnodes during surgery?

If you go to a Cancer Center you can take all the reports with you and no need to go through the testing again. The Cancer Center will look at all the reports and setup surgery or go from there.

I waited an extra 2 weeks to have a surgeon at a Cancer Center do my surgery. I know time is very important that's why I asked how long has she had the lesion on her tongue. Mine started in Dec. and after all the craziness my surgery was in April.

You and your Mom are in my prayers, she's lucky to have you by her side helping her.

Keep us posted.

Take care,
Connie

Per Wikipedia.....


IN SITU.....
Carcinoma in situ (CIS) is an early form of carcinoma defined by the absence of invasion of surrounding tissues. In other words, the neoplastic cells proliferate in their normal habitat, hence the name "in situ" (Latin for "in its place"). For example, carcinoma in situ of the skin, also called Bowen's disease, is the accumulation of neoplastic epidermal cells within the epidermis only.

For this reason, CIS will usually not form a tumor. Rather, the lesion is flat (in the skin, cervix, etc.) or follows the existing architecture of the organ (in the breast, lung, etc.). Some CIS, however, do form tumors, such as in the colon (polyps), in the bladder (pre-invasive papillary cancer), or in the breast (more properly called ductal carcinoma in situ).

Many forms of invasive carcinoma (the most common form of cancer) originate after progression of a CIS lesion.[1] Therefore, CIS is considered a precursor or incipient form of cancer that may, if left untreated long enough, transform into a malignant neoplasm.

When explaining a laboratory report to a patient, most doctors will refer to CIS as "pre-cancer", not cancer. However, because most forms of CIS have a high probability of progression into invasive carcinoma, doctors will usually recommend that the lesion be completely removed. Therefore, CIS is usually treated in much the same way as a malignant tumor.

In the TNM classification, carcinoma in situ is reported as TisN0M0 (Stage 0).

Thanks everybody!

We just came back from the doctor for the results from the CT scan and xray. All were negative which means the cancer didn't spread yet. Thats a great sign as it took alot of weight off everyones shoulders.

I asked for a copy of the report from the biopsy. it reads as followed

"superficial strips of at least squamous cell carinoma in-situ"

Can we determine what the cancer stage from this? since the CT scan and xray are both negative?

Thank you all so much for the support. I love you all!

Tommy, you are getting good advice. Like spme pf the others I had radiation, chemo and radiation seed implants. Lost a lot of tongue, my teeth plus the neck dissection. It will be tough on uyou both for awhile but she should be fine. To me the after AFFECTS ARE NOT SO PLEASANT EITHER SO PREPARE FOR A TOUGH FIGHT. i BET YOU WILL BE A GOOD CARE GIVER TO YOUR mOM. tHAT SHE REALLY NEEDS. Excuse my typos. I can spell very good but sure aren't a typist.

Tomm, one thing you seem hung up on is the Stage. While it is important, it does not mean a Stage IV person doesnt have a good chance of beating this and a Stage I person will always get thru it. Ive been both Stage I and Stage IV. I hope you take some time going back and reading the responses again. In my previous post that I took from Wikipedia, in situ is a pre cancerous condition. It even is shown written out as Stage 0.

I want to make sure both you and your mother both understand what surgeons do in these situations....they cut. Once its done you cant put it back. Sure the docs can piece a person together but it is never the same. Im like a jigsaw puzzle with all my pieces transferred to other places on my body. Im trying to make certain that you both know from what you have explained to us, it seems like there is plenty of time for a second opinion at a cancer center. This is very important before she jumps in and has surgery without even knowing how much the doc is cutting out.

What also concerns me with her situation is that the result is not exact. It says it is at least SCC in situ. What kind of biopsy was done? Was it a fine needle biopsy or was a piece actually snipped from the area in question?

As you are finding out, we always are looking out for the patients best interests. Its much better to delay a couple weeks and be certain this is the proper route to take.

Thanks ChristineB,

They cut a piece out of her tongue for the biopsy. Tomorrow we will be consulting with another ENT to get a 2nd opinion on it and see what needs to be done, we will also be on Wednesday with the one thats suppose to do the surgery.

The surgery will be performed in a Cancer Center. We have spoken with our primary doctor today regarding on a good cancer center, and he said while facilities are important, what's most important is that we find the best surgeon to do the operation. We are in the process of finding the best one.

Please let me know what you guys think. I thank you so much for these advices.

That sounds great you want a good surgeon at s cancer center... Good luck!

Tommy,
For what it is worth. There are hospitals that call their facilities, "cancer center", but they are not the kind of cancer centers we are talking about. This is the link to the list that someone (David I think) posted earlier:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm
These folks have likely seen & treated lots of tongue cancers.

My experience with small cancer on the tongue is that it is tricky. I found out that it was possible mine had been around longer, healed up some, and then was discovered. Or maybe not. If you're not at risk for it (smoking, chewing) then perhaps a person does not pay much attention. What was stressed to me was:
the best time to cure it is now. That does not mean get it operated on tomorrow, or 3 days from now. That means get the plan formulated correctly.

Believe me, you do have two weeks to get a second opinion on it. You mention a white spot. So it is possible she has another place with cancer. Or maybe not. You won't know until you get it all out with wide margins--maybe. That is why sometimes radiation is recommended with tongue cancer unless it is very early. If she truly has cancer in situ, well that's something different.

I'll make it plainer: GET A SECOND OPINION. Check the list. You owe it to yourselves so you won't think "if only, if I had" about this particular issue.

The way to help your nerves in the long run is to do the above.
Best,
Anne

hi every we're getting ready for the consultation with a ENT soon. While everybody looks alot more relax from the CT scan results. I am still very worry.

Can the CT scan show if the virus has spread to the lymph nodes? if not what shows it?

Im a bit confuse from the report from the CT scan. it reads

"there is no mass in the floor of mouth, oral cavity, tongue base, oropharnyx, or hypopharynx. The laryngeal structures are within normal limits. The parotid and submandibular glads are normal in size and enhancement"
"No evidence for cervical lymphdenopathy by CT size criteria."
"The thyroid glad is unremarkable"
"The paranasal sinuses and mastoids ar eclear"
"Visualized portions of the brain parenchyma and orbits are unremarkable"
"No prevertebral masses are seen. The vascular structures enhance normally."
"The osseous structures are unremarkable with exception of degenerative disc disease in the cervical spine particularly at C6-7"
"There is no pulmonary nodule or mass in the visualized lung apices."

I am a bit confused because the first sentence says, "there is no mass in the floor of mouth, oral cavity, tongue base, oropharnyx, or hypoparynx", doesnt that pretty much say she doesnt have it?

Please let me know what you guys think.

The scan showed no abnormalities so other than the bio results there is nothing that the scan points to as suspicious. I know this is all new to the both of you but you keep using the word VIRUS when talking about the SCC. If it is SCC, it's cancer. Now it's possible that a virus caused the cells to go malignant but that remains to be seen. I am still troubled by that phrase "at least squamous cell carcinoma". I have read a ton of path reports and never have I come across that phrase.

I repeat what I said before. Please consider getting an opinion from a CCC BEFORE ANY FURTHER TREATMENT IS DONE, ESPECIALLY SURGERY.

I agree with David go to a Cancer Center there is a list on OCF website. They will be straight up with you.

Connie

Okay - the report says basically there is no other cancer other than what's on her tongue - I'm assuming - base of tongue is a different location than the oral tongue - though usually a path report will also give the dimensions of the lesion too. So that's odd.

Her lymph node did not highlight - to ct size standards - meaning there could be cancer in the nodes but too small to detect with a ct. (on a microscopic level) but everyone here is right your mom needs to be seen at a cancer center. Good luck! And wish your mom many blessings!

CCC stands for Comprehensive Cancer Center Tommy. I hope things are going good for you.

Tommy, knowing which state you live in might help some in your area give you a good CCC.