Please help me - still overwhelmed and in shock. Friday husband went to dentist for sore on tongue. Dentist cut it out on the spot and sent for biopsy.The next day husband ended up in ER with extreme throat pain. They did CAT scan and gave us good news that the cat scan looked clear. So we were elated and thought that probably meant we caught it early. Then yesterday dentist gives us biopsy results : "Squamous Cell Carcinoma stage 3". We freak out because stage 3 sounds more late than early. Called UVA cancer center this morning and they told us that is just his "pathological stage" and that he needs to be clinically assessed by an ENT and that he may or may not be actually stage 3. Huh? So my question to you veteran fighters is this: were any of you diagnosed with stage 3 on the biopsy and then later staged less (or more) clinically?

I’m sorry for your troubles, Tomswife, but welcome!

Scans may not catch everything, particularly when it’s below a certain size, but at least they found it from a biopsy, which I’m not certain which type, maybe an excisional biopsy? This may ir may not have clear margins, but the ENT wouid advise.

Most hospitals/doctors use the NCCN Guidelines for Head and Neck Cancer, specifically tongue, for testing, treatment and follow-up. Mine was in the oropharynx, stage 4, and is a different area, somewhat different treatment and testing, but similar in certain aspects as both are most likely squamous cell carcimoma 90% of the time. That should be on the biopsy report.

Yes, there are different grading, pathologically, usually designated by a small “p” before the TNM grading. Clinically it’s a small “c” and after surgery, a small “s” and that can be changed surgically by the TNM grading, usually downgraded. You will find out the TNM grading from the biopsies and or from the ENT.

Don’t let the staging bother you, its just a treatment gauge, number, and other things may be as important. I was stage 4, like many other patients here, and currently cancer free as I’m waiting for my 5 year mark, and wish your husband well too!

Treatments will be guided by the TNM grading, physical exam, and condition of the patient, but I haven't looked at the treatment options in the NCCN guidelines lately for oral tongue cancer or know all the particulars, but it’s basically surgery, plus or minus radiation and chemo for later stage cancer.

Where you are treated matters too! UVA, sounds like University of Virginia? I’m not from that area, but double check it’s a comprehensive cancer center or cancer center, highly rated in head and neck cancer, if not, one can always travel to one to be treated, if applicable, or confer by telephone/computer to work one with your center.

There is a listing of member hospitals with the NCI, NCCN designation, and yearly rating of hospitals with The US News Report Best Hospitals 2018 listing. Being treated at a high volume center in your particular cancer can make a difference, and know first hand from experience.,

There’s more to cover, but I think this may be enough for now. You can also go through the diagnosis, testing and treatment pages here to become familiar with them, and if you have any questions, ask here, besides with your doctor.

Good luck!

Thank you Paul I really appreciate you taking the time to reply. And it is REALLY encouraging to know you are a long time survivor. Last night as I was reading old posts I stupidly kept reading people's bios. Ran into a lot who had not posted in years (which made me wonder if they died) and quite a few whose bios actually notated their deaths. This is all so foreign and overwhelming. I appreciate the info you gave me. My husband'd dentist said he took out the whole thing, down to healthy tissue. But I doubt he can be sure. We called University of Virginia this morning but they are scheduling for end of May. So we are going to see a local ENT first and then transfer. Over a month seems too long to wait!

Most of the people you see who have not posted in a very long time have simply gone back to their regular busy lives after recovering. Yes, quite a few good people have very sadly passed away. The hardest task of what I do with OCF is notifying our members when someone dies. Over the past few years Ive tried to add the date of passing for those who check in not on a regular basis. Ive been fortunate enough to have met a great number of our members who are oral cancer patients and caregivers. These people are always honored at our oral cancer awareness walks/runs and events with a special tree with ribbons of our deceased friends names on them. Its especially hard on the members who are close to those who pass away.

Reading bios of those who have passed away can be upsetting! It bothers me when I think back to all the friends who have died from OC and know there was absolutely not one thing I could have done to change their outcome. The very best thing you can do to help make this as easy as possible to handle mentally is to prioritize and focus on what is within your control. If you want to learn about your husbands illness, a very good place to start would be the Understanding section from the main OCF site. You will not be reading the personal stories and bios of the members who made the posts so it should be easier to get thru. Jot down questions you want to ask and after reading thru that area if your question has not been answered, then post it on the forum. By learning about OC, you will be a strong advocate for your husband. Try to focus on the positive and what is in your control. Do your best to avoid the negatives, the past and try staying busy doing positive proactive things. I used to clean out my closets whenever I started to dwell on things beyond my control that were negative. By physically getting up and going to do something productive helped me to avoid the ":what if" way of thinking.

Always remember, every person is an individual and will respond to things in their own unique ways which may or may not be similar to another patient who has a similar history. Comparing patients often is not an equal comparison. You can take 10 people who on paper appear identical... same age, sex, weight, tumor size, tumor location, stage, node involved, live in the same general area, same habits (smoking or not, drinking or not), etc. On paper you would think all of these people would pretty much go thru the same things with treatments, recovery, etc. But they dont! Every single one will report different side effects of varying degrees, some struggle from day 1 while a few lucky ones will bounce right back without any major issues. The point Im trying to make is comparing OC patients doesnt work! Every one is different and will respond in their own unique way. Ive seen many Stage IV patients (myself included) survive and go on to live very good, full lives while some Stage I patients have a difficult time and sadly even Stage 1 OC patients can pass away.

Only after going thru many tests will the official staging be done. Your husband will get scanned before the doc can review everything and give the Stage. Yes, its possible for Staging to change between the quick preliminary Staging and after all the tests are done and added into the mix. It could go either way. Its only a number! Try not to get too hung up on the Stage, treatments would likely be very similar regardless if it was Stage 2, 3 or 4. The dentist is only relaying what the pathology report said after testing the biopsy. OC is medical, not dental. It very rare to run into a dentist who removes tumors, does biopsies, etc. Im glad to see you have started making arrangements to get an ENT. Now that your husband has a cancer diagnosis you may want to start calling around to treatment centers to get the oncologist appointment scheduled. That is likely to take some time as well. Check with your insurance company if you would need referrals to make your appointments.

Heres the links in case you missed them from one of my earlier posts...

List of Cancer Centers

US News Best Hospitals List

Main OCF Site, Understanding section

Thank you Christine. Everything happened so fast. I am starting to think we made a mistake letting the dentist remove the tumor. We did not know better. My husband feels like he might have made things worse. The dentist did say he removed the whole tumor down to healthy tissue. I pray he actually did, because I worry that the cancer may spread faster if he didn't. I know that is what Tim is thinking, but mercifully he does not try to "research" like I do. The hardest part is waiting to get in with the ENT. We are on a cancelation list, but right now we are scheduled for May 7.

A cancer diagnosis is indeed overwhelming. Please do not make it worse for yourself trying to second guess what the dentist should or shouldn’t have done. The best thing you can do for yourself and Tim right now is to read up on oral cancer so that when you see the ENT, you will be in a position to ask the “right” questions. Read the info in the links that Christine has given you and write down any questions that you may have for the doctor. You will also be prepared for any treatment that Tim may need. You would like to know you are doing something that is positive and which will help you to cope later on(if any treatment is warranted). When things get unbearable, go for a walk around the block or do something that you find calming. You want to take control of the situation instead of reacting to it all the time. My husband would not do any reading about his illness and, I think, never really understood what was happening. But that was okay, as long as he would do what I told him was good for him. Sometimes things are harder for a caregiver than for the patient because we are racked by anxiety. I felt truly supported by this forum during the whole time John was sick.

I can't agree more with the comments here, especially not second guessing. It just drains energy, and accomplishes little. Just take it as a learning experience, and readjust plans as new info comes in.
I was in your shoes somewhat. I found my cervical lymph node tumor myself while rubbing my neck, saw my primary doctor, and had it removed by a general surgeon, just one week later. Never saw any ENT, Oncologist, or had any head or neck scans, just a chest x-ray.
So when it biopsied as SCC, I went to a cancer center, had a PET /CT scan, and they referred me to a ENT.
The first thing the ENT said, after shaking his head, is that I did so much out of order. But he didn't spank me too badly, he came up with a referral to an ENT Oncologist.
But from there onward, I just made sure to make my appointments ASAP, get insurance authorizations, get copies of my reports and images, and document and understand where I stood at a given time.
In other words, devote my energy and time to what is in my control.
If there are any residual cancer cells left from the lymph removal, then I will have to have faith that the rads and chemo I just started, cleans that up.
I know those t-shirts and mugs are a little corny, but it's so true with this unique cancer, "Keep calm, and carry on".
You are on here getting advice, you are being a caregiver, getting information to help make good decisions, so you are on a good path. Have faith, that anything that happened that wasn't optimal, will be compensated for by current and future treatments.
All the best to you and your husband.

Thank you both! I am so new in this journey that my head is still reeling, but I will get my act together. I am grateful for the support of others who are further along in this journey than we are. My husband is not reading up on oral cancer either, and I think that is a good thing! He is prone to depression and if he read all the scary stuff I have read I am sure it would really affect his attitude toward fighting this. I know a positive attitiude is VERY important in fighting serious disease. I myself have Multiple Sclerosis; diagnosed 12 years ago when our youngest child was just 6 months old. I fell apart for a few days right after diagnosis, but then I pulled myself together and am proud to say I am doing WELL living with MS. I do battle debilitating MS fatique quite a bit; but my MRIs have been stable since 2008. No one even knows I have MS unless I choose to disclose that info. In other words, I am living well with a chronic disease. My hope is to help my husband live well while fighting cancer . CM57 - thanks also for letting me know we are not the only ones who began "out of order". 😊

Always look forward. Anything that has happened already is nothing that can be changed. By second guessing what the dentist did will only bring on more unneeded stress and anxiety. No matter what... the past is the past and for your own well-being the past needs to be put behind you and left there. When you find yourself starting to do the "what if" thinking, allow yourself say 3 minutes to contemplate those thoughts and then "change the channel". It takes practice but once you have mastered the time limit on those negative thoughts and "changing channels", I guarantee you will become better able to handle everything. To "change the channel", you need to physically get up from wherever you are and stop doing whatever you had been doing when the "what if's" hit you. Start thinking of something positive that will be a productive way to avoid the "what if's". You probably are thinking I must be crazy... nope!!! I was in a position just like you where I felt everything was out of control with so much happening so quickly. For my own sanity I had to figure out a way to reduce the amount of time I was dwelling on things I couldnt do anything about. Since Ive always been a person who looks for the good in all situations, even in very serious and troubling ones it wasnt difficult finding things to do so I could avoid the "what if's". I used to clean out all the closets in my house to escape the "what if" thinking. That was a chore I hated doing and usually put it off. Once I ran out of closets I moved on to the garage and basement then the outside shed. It wasnt easy but eventually I was able to avoid the what if thinking. You will need lots of practice but I know once you get it, you will feel so much better and more positive. Limiting the "what if" thinking will help to make it easier to keep smiling even thru the hard days.

Im sure both you and your husband must be feeling overwhelmed. Its completely normal for anyone who is forced to face their own mortality or that of their spouse. I really feel that sometimes being the patient is the easy part in all of this. Gloria is correct saying caregivers sometimes have it harder than the patient. In many ways they do! You have to muddle thru trying to get your husband in to see the right doctor, you deal with all the billing and insurance paperwork, make phone call after phone call making appointments, search for the best specialists you can find, oversee everything your husband takes in, encourage and motivate your husband, etc. All of these new things have been suddenly put on your shoulders regardless of everything you had already been doing for your regular lives. No matter what your fears and concerns may be, you must maintain a calm, reassuring manner while also keeping a smile on your face. Even when you just want to crawl under the covers and hide, you must still smile and have a sunny, positive attitude. I know I could never manage the caregiver's job even though I am usually a calm, happy and positive thinking person. With so much going on, its very easy to do for everyone else except yourself. You definitely dont want to get burned out! Dont forget to take some time just for you. Even if its only 5 minutes a day, you need that time to help clear your head and focus again on the big picture. Treat yourself to a manicure, read a good book, start a hobby like genealogy, go see a movie or out to lunch with some friends are a few things that you can do during your "me time". Your husband needs you so make sure to always take your "me time". It really will help you maintain that sunny, smiling disposition

When you talk to friends and relatives about your husbands cancer, many people will offer to help. Most people genuinely do want to pitch in but they dont know what they can do. Write down their name and contact info and tell them when the times comes you will let them know what they can help you with. Theres a million little things that can make a difference for you and your husband. At this point you dont know if or what any further treatment would be. Once a treatment plan has been given, you may find many small things that others can do to help. This is another positive thing you can do to help prepare for the next step (whatever that may be).

Ive passed along my ways of dealing with the "what if" thinking and the "me time" for caregivers to many members. Ive heard a great deal of positive feedback from those who tried what I suggested. I know it will help you too if you can give it a chance. Try your best to focus your energy on things that are within your control. Dont get too far ahead of yourself. Take this one day at a time and one step at a time. If you practice changing the channel on the "what if" thinking I know it will help to avoid adding extra stress. You can always ask questions, rant, vent, and we'll listen and try to help. We completely understand exactly what you are feeling and going thru. Cancer isnt only affecting the patient, the spouse is right there in the fight too. Its perfectly ok to not always be strong, for those times its perfectly ok to lean on us. Hang in there!

Correction: I just realized my MS diagnosis was actually 13 years ago! Will be 14 years in November. 😊