Kimberly,

Just in this thread you've gotten a lot of information and I'm sure you are feeling overwhelmed.

Based on your comments in your post the doctor you saw last week classified it as superficial. Which I take it to mean that it was on the surface of your tongue most likely stage 1. Did he confirm this with a biopsy or some other type of test?

As was stated above, the next step would be to have a scan to see if it has spread. This will probably be a CT scan. UMPC will probably want the actual biopsy slides to do there own analysis. Based on these results the doctor(s) will determine a treatment plan.

If it is stage 1 without spread, your treatment could be surgery alone. Part of the tongue plus a possible neck dissection to removed some lymph nodes in the neck. OC typically spreads to the lymph nodes first, so a lot of surgeons will recommend the neck dissection to determine if it has spread even if the CT scan doesn't show this. Some doctors recommend "throwing the book at it" during your initial treatment to minimize the chance of recurrence.

Radiation with or without chemo may be recommended depending what shows up on any additional tests and what they find during surgery. A lot of people with OC end up with radiation and chemo because their cancer was found at a more advanced stage. Some of the advice you were given so far has to do if they recommend radiation.

I've had 4 surgeries on my tongue and radiation about 8 months after my initial surgery. My cancer was found early and my initial treatment plan was surgery on my tongue only (no neck dissection). I went for a 2nd opinion after surgery #1, and that doctor felt that more of my tongue should have removed plus he wanted to do a neck dissection. Needless to say hearing this after already having surgery was extremely upsetting. To top it off when I had sent the surgery biopsy slides to be reviewed, they found out that the original pathologist botched the results. He gave me an all clear and there was actually cancer at the margin. I was now a complete basket case hearing this. I went for a few additional opinions, multiple scans and other tests, and the good news was they did not find any signs of cancer. So they left it up to be to have radiation or pursue "watchful waiting" meaning keep an eye on the area with frequent doctor visits and tests.

The hospital where I had surgery #1 was a small local hospital not a major cancer center. When I had a recurrence I sought treatment at Johns Hopkins in Baltimore, which is the best or one of the best H&N cancer centers in the USA.

One thing they did during my surgeries at Hopkins was using a blue dye and frozen sections. The blue dye (can't recall the official name) helps identify areas of concern. Frozen sections are a type of biopsy that is done during surgery - it is a quick biopsy, so not as accurate as a full biopsy, but it increases the odds that they will get it all during the surgery.

I know a number of OC survivors whose only treatment was surgery. That is why early detection is so important. Radiation is often necessary when found later and radiation IMHO is by far harder to recover from and has more long term issues.

Right now, take one step at a time. Get prepared for your next doctor appointment by doing research and making a list of questions to ask.

Hi KimberlyAnn,

So sorry you have to join us here but to echo what others have said this truly is the best place to get information and solace from people who have dealt with similar issues.

I was diagnosed on 3/24/14 and had absolutely no risk factors so I know it's quite a shock, especially when it's so new. The people here have given me wonderful advice and I'd like to pass some on to you. Take one step at a time. It's scary for everyone but people care and are here to help.

Good luck with everything!

Thank you guys, your stories are sad, and helpful and hopeful to me. I found out it's not superficial and it spread to my lymph nodes. I have a cat scan ordered for Thursday at 8 and then we meet our dr an hour later.
He wants to check my neck and lungs. I had bronchi soaps and asthma back in January and was on steroids for weeks. My asthma is better. The singular I was taking have me hives so I stop taking that. I breathe very well and had no issues no far.
I visited my pc doctor and he just reassured me I was in good hands. I been praying a lot and it's the only thing that gives me any sense of peace. I was told it might be stage one or two. But from what I read is that of you need log nodes removed it's stage 3. So I sit and wonder, why did my eNt dr say that to me?
He said we may just be able to cut out the cancer, left side oft tongue, savaroma type he said, most common kind, and maybe do radio/chemo.
Do they sugar coat things? Beginning to wonder here.
Anyhow, I find out everything on Thursday morning. I starting to get anxiety feelings which scare me cause I have been to the er a lot in the last fir full blown anxiety attacks.
I been told it's 5mm or 1/5 of an inch.
Anyhow, thank you all for posting, when I am grounded here, I can get on my phone puter and respond more and in detail in an individual way.
Right now, I am trying to stay offline as much as possible, to much info is not helping me!

Kimberly

If it has spread to our nodes it's the number of nodes that matters. I mean this when it comes to determining staging. It goes by size and number of nodes involved. It's a small size, but if there is more than one node involved then that would make you a stage three. I am not sure where you live or where you are being treated but your drs approach seems rather cavalier. I would make sure that he or she is very experienced at dealing with oral cancer, and very good at what they do. I say this because based on what you are saying - small sized primary cancer - but nodal involvement - indicates it might be an aggressive cancer. If this is the case more is better than not enough in terms of treatment. Do I think he is sugar coating? I don't know, it could be that - maybe he trying to minimize your fear by saying what he has, however more concerning would be the possibility that he's not overly experienced with this cancer and believes (un realistically) that he can simply cut it out. This is a recipe for disaster.

This cancer can be crazy aggressive, I've seen people with a T1 cancer die from it and a stage 3 or 4 survive. These results are based on a variety of things - individual health/lifestyle/age, genetics, aggressiveness of the cancer and medical care (how they have been treated, and by whom)

If I were you I would go to a cancer facility - and see a top ENT who deals primarily with oral cancer. This will give you the best chance at getting through this. Hugs and welcome... And so sorry you have to be here. Hugs

Kimberly,

I felt like that too when I first started this journey. Granted it's only been about two weeks. Information can make you anxious, especially when it is so much so soon, but it can also be helpful in certain ways. Do what you think is best for you.

From what I have been told, people usually recommend node removal if the tumor is at the 5mm or deeper mark. Originally, mine was only said to be invasive at a depth of 1 mm but when I got my MRI it showed a depth of 4mm. Now, some of this could have been inflammation still from the initial biopsy. Two of the doctors said I did not necessarily need a neck dissection, while three at the CCC suggested that I get some nodes removed just to make sure. They tend to use a more aggressive approach to ensure that the risk of recurrence is less. I had a PET and a CT scan. Both came back normal except for one node that measured 8mm (10mm is considered suspicious based on pathology reports) and so I opted to go ahead and have it done as a precaution mainly from the advice of the team of doctors and many other members here. This has nothing to do with staging. My advice about that would be to not get too caught up in it. I was very caught up in that at first but my surgeon told me that it is simply a tool used for them to quickly explain to other doctors what the situation is for each patient. It does not necessarily give a patient any valuable information.

I know this is a lot to handle but you can do this. If you need help, we are here.

I was told that lymph nodes would have to be removed, and that I wa in stage or 2, after the biopsy he confirmed that. He is one if the top specialists in Pittsburgh at upmc, so I am lost. Either he is correct or hasn't been truthful. I still must get an car scan to see if my neck and it lungs are affected. I meet him on Thursday to discuss it all, and what he will do.

He said I had the most common kind of cancer, sacqerous type, not sure how to spell that. My left side of my tongue has a cancer legion that is 5mm.

Squamous Cell Carcinoma, SCC, is the most common type in head and neck cancer. Anything with lymph node involvement is stage 3 or 4. It can be a small tumor, T1 or T2 in the TNM staging system, T tumor, N nodes, M distant metastases, which is used more often by the medical community than stages I-IV of disease. Mine was T1N2bM0, and will see similar in other signatures.

http://www.oralcancerfoundation.org/discovery-diagnosis/stages-of-cancer.php

Hi KimbelyAnn,

I'm really sorry you have to go through this in the first place, and having so little information makes it more scary.

I get that you Physician is a top-notch guy, but I'm still going to strongly suggest that you get a second opinion, and get it from an oral cancer specialist!

You should discuss these issues that are confusing to you, with this guy. Also, is UPMC a CCC (Comprehensive Cancer Care Facility?) If not, please try to ensure that you get your second opinion from someone from a CCC; you want someone who does nothing but Cancer and not someone who sees one or two Cancer patients per year. The reasoning behind this suggestion should be obvious. Please do this, and don't waste time doing so!

My final bit of advice is to recognize that Doctors are people, and will tell you things that they feel you should know, and withhold things that they don't think it would be useful for you to know. Just like people in all walks of life.

My point here is that you must be careful not to be overawed with the Doctor's credentials, where you are concerned, what matters is how well he meets YOUR needs. Do not be reluctant to be demanding, if the occasion calls for it!

Knowing this, make sure that YOU ask the doctor to explain any matter that is confusing to you, and don't let him (or her) rush off to another patient until YOU are satisfied the question has been answered to YOUR satisfaction!

I'm not kidding here, this is life and death business, and it's YOUR life that is affected. Take charge, kick @$$ and take names and be a force of good for your life's sake.

Good luck, KimberllyAnn, and forget the Gipper, go out there and will one for the KimberlyAnn!

Bart

Kimberly, Im so sorry you are joining our group due to being diagnoses with SCC. Soon you will learn a whole new vocabulary of medical terms.

Try to read the forum and main OCF pages to help educate yourself. Being an informed patient is going to make it much easier for you to advocate for yourself when the time comes.

Now is the time to eat like crazy. Have all your favorites, even dessert. Just ignore the calories. Its ok to gain a few pounds as you will probably be like most of us and a lose substantial amount of weight. If you are on the slim side, its a good idea to bulk up a little. During treatment and also in your recovery phase, eating and swallowing will probably be a challenge. Your sense of taste will be off and swallowing could be a struggle. This phase is horrible but usually its temporary, lasting anywhere from 4-16 weeks.

Every single day from now thru the first year after you finish your treatments, your daily intake should be a minimum of 2500 calories and 48-60 oz of water. It sounds like alot but in reality its not. Your body is fighting the cancer, plus it will be trying to heel from the effects of treatment. Both of those things burn calories like crazy. Some days will be harder than others to take in so much but you can do it. We are in your corner, here to help cheer you on to the finish line.

Best wishes!