Who knew a stupid little sore would be such a big deal? Ack!

I just had surgery for a lesion on my tongue that would not heal, and was getting worse. Surgery was the 31st of May, am healing well enough. Of course it proves to be cancer, and every follow-up sounds scarier and scarier. At first the docs don't want you to worry about cancer, then it's gonna be fine after surgery, then we are being told radiation, and our 2nd opinion doc today scared me to death with talk of rad plus chemo plus feeding tube. Oh, and I have a severe anxiety disorder which mainly manifests as nausea and migraines. Only God's grace has gotten me this far without throwing up from fear (which I imagine would not be good for my tongue), but today has pushed that limit. And reading this forum, it sounds like second opinion doc is not so far off the mark.

FWIW, it was squamous cell, and probably HPV, which is baffling since I do not fit any of the oral cancer or HPV risk factors I can find, but whatever, it is what it is. Now I just want it gone! Preferably without sending me back to the dark ages of my earlier panic issues, which were finally under control.

Help! I am very scared.

Oh, and I am married, two kids, turn 38 next week. Only day of the week I do not have an appt scheduled, yay.

Kristen the Terrified

Kristen

Sorry to hear of your troubles but you are in the right place if you plan on fighting this thing.

First off: You would not be human if you weren't scared to death but you need to keep remembering that thousands have made it through treatment and there are hundreds who are currently active on this forum and are here to help.

Second: give yourself some credit for internal fortitude! You have not thrown up and you have taken a couple of very important first steps - you have taken yourself to the doctor, got a diagnosis and then acted. Good for you! You have also got a second opinion and are now in the process of dealing with the immediate decisions to be made.

The best chance for success involves getting yourself into a hospital or cancer centre where the docs treat a lot of oral cancer. These people, know what they are doing, know all the latest treatments, have access to new treatments and work as a team to deal with a whole bunch of the issues. I hope someone based in the US (I am in Australia) will post a link to the best hospitals in your area.

You just continue to do what you are doing by learning what you need to know, reaching out to others who can help and taking one step at a time to get through this. Try not to think too far ahead if you are prone to panic and just worry about what you can do today and what you need to do this week. Worry about next week, next week (except for your birthday - think about about what you are going to do to make it especially fun and shut out the crap for at least one day).

You have some positives going for you - the most important being that you are young. This will help you tolerate treatment better than most of us who are "old farts" by comparison. Your immune system should be in better shape at your age too. This means your body will be better equipped to heal with the help of treatment.

If you are HPV +ve, this is good because your response to treatment is likely to be better than if it were smoking related.

If you smoke - stop. NOW

And lastly, if you add a signature to your posts it helps us to help you. You do this by going to the top of the page where you will see something called "My Stuff" with an arrow next to it. Click on the arrow and go to "edit profile". You scroll all the way to the bottom and you will find a box that you can type up to 300 characters to describe your circumstances. This will appear automatically on all your posts. Have a look at others' to give you an idea - it is the stuff that appears at the bottom of members' posts below the line.

Come back and ask questions when you feel that you are ready.

Welcome Kristen, and sorry you had to join.

One of my first ENT's said after I had a FNAB, Fine Needle Aspirational Biopsy on a swollen neck node, "You have a "small" tumor that came back positive for cancer." so I thought nothing of it. Everything moved fast after that. I went in, probably that day for the ENT to examine me again, saying he can't see anything on a scope of my throat. He then sent me to another ENT, who did these surgeries that was from a well known hospital, further saying, "they are not capable of handling this type of surgery here." I never forgot that, and from there went to a CCC, comprehensive cancer center. After that I had a shotgun education, and didn't even know what an Oncologist was. I thought it was for women since I saw a hematologist there for anemia, and most of the patients were women, and before I knew it, I was in treatment, an month later.

My story is long, and my "small" cancer turned into a mountain, and almost a four years roller-coaster ride, or rather hell ride, so I won't get into that lol, but I did see you think this cancer is from HPV? By age 25, 90% of the population is exposed to an HPV, and only some high risk one goes on to cause Head and Neck cancer, mainly HPV-16. Was the sample tested for HPV, if not, they can test it if it was frozen. I say this since HPV-16, which 95% of the HNC are, rarely occurs on the oral cavity, tongue, 90% of the time it's in the oropharynx, mainly the tonsil and base of tongue, BOT. If it is positive, the doctors should be looking in the oropharynx, which may be where the primary is then.

Depending on the tumor size, grade, TNM staging, T-tumor, N- nodes, M-metastases, pathology, stage, some doctors just do surgery for small T1-T-2, others just do radiation, and or surgery and radiation, then some do all three, and depending on the tumor thickness a neck dissection, which is debatable in an N0-1 neck.

I would think they will do a full workout exam, including blood work. Chest x-ray. A PET/CT or CT or MRI to see of any other involvement in the HN or distantly, a pandendoscopy or called triple scope, to see if there is any other involvement in the aerodigestive tract under anesthesesea, where a biopsy sample can me taken of the structures, lesions.

You can find a CCC by looking here for NCI and NCCN associated CCC, and in U.S. News Report's Best Hospitals, 2013 for any CCC, which makes a difference in your care, in your area or somewhere to travel to for a 2nd opinion. If I can post the links, I will, but time to have coffee

Good luck.

Hi there... I had a lesion on my tongue as well under the left side near the back. I had it for quite some time, and went through two biopsies before it was discovered. The first time out the ENT missed it because I only had pain and redness but no actual sore - the tumor was inside the tongue this is why it took so long to diagnose. My surgery was likely a little more involved than your because it involved a neck dissection and a graft of my tongue.

And yes that little lesion is a big pain in the butt. Historically oral cancer has been considered an old mans cancer - usually afflicting heavy smokers and drinkers.

The demographics for this have changed - and have broken down a little - first there are the HPV+ cancers which usually tend to be BOT tumors or found on the tonsil. A base of tongue tumor is not visible to the naked eye and often not painful. A base of tongue tumor (BOT) is actually located down the throat.

If yours was on the oral tongue (the part of your tongue that's in your mouth and visible - ish - usually they hide under near the back) it's possible - but highly unlikely that its HPV+.

I've made this distinction because this tumor (HPV - ) is usually treated with surgery first. Then based on your scans, and post surgery biopsy - follow up treatment is radiation and chemo. Radiation being the primary follow up.

Hopefully the next little bit will not heighten your anxiety -

If you did not have a neck dissection - keep an eye on your neck and any lumps report them immediately - get to know your neck and mouth WELL - don't obsess - but just be aware of what's normal. Even the smallest lesion can seed to the lymphnodes in the neck this is why most HPV - oral cancers often include a neck dissection.

If they are radiating you and didn't do a neck dissection then confirm with them that they are going to include your neck in the radiation field. That way if there are any stragglers they'll be cooked. Chemo is just a chaser to boost the effect of the rads, some people only experience minor nausea, some have a severe reaction to it, most sit in the middle, uncomfortable unhappy but doable. Chemo is also systemic so if ere are any stray cells outside of the radiation field - it can clean them up.

I'm a woman who doesn't drink, or smoke, I have never done drugs and I'm a veg head. Yet I still got oral cancer. We are the new demographic. There are also very young people here who've had it too.

The best thing you can do is be treated at a top notch facility (CCC - comprehensive cancer center) by a top notch ENT. And treat it aggressively - do what you can to get it now.

The PEG - feeding tube - is useful - it's also a hot topic here. Whether to have one or not - radiation is not fun - not gonna lie - it sucked big time and I was one of the lucky ones who didn't have a super rough time of it. If you are sensitive to pain and have trouble forcing yourself to do things no matter how much you know you should - a peg might be a good idea.

Around week 4 treatment becomes painful - and food begins to taste totally crappy, before it loses all flavor. If you don't think you can force yourself to eat and drink at this point then a peg might be for you.

Nutrition and hydration are VERY important throughout treatment - they are the building blocks of healing. Malnourishment and dehydration will land you in the hospital and make the whole thing take longer and be far worse.

I'm not saying get a peg, I'm just saying be aware that no matter what route you choose you will have to make sure you meet certain daily requirements of protein, calories and fluid. It's in your best interest.

If you decide to go without a peg, (I had one in but couldn't use it and I would throw up every time I tried) then it will be harder but near the end they can put a nasal tube in if needed (these are very visible as they go in your nose and kinda hang there from your face, but they are temporary and can be removed after a few weeks.

The one important thing regardless of which way you go you must continue to swallow even small amounts of liquid. If you lose the swallowing reflex it is very hard and in some cases impossible to get back.

Okay that was probably information overkill - sorry - but I believe knowledge is power and puts you in a better place to advocate for yourself.

It's hard but you will get through it. hugs.

I have a PET scan Monday, to see if it is elsewhere. The path report said P16 positive, and also that the cells were poorly differentiated. I gather that the first is good and the second is bad. No info on stage or anything yet. I will try to post more details later if it helps. Still learning the language.

I am glad to hear there are options.
Off to spend some quality time with my daughter,
Kristen

Link to CCC's US news...

http://health.usnews.com/best-hospitals/rankings/cancer

Kristen,

You're in the right place to get the straight dope on H&N cancer. Everyone here can relate to what you're going through to a large extent. By far the knowledge and experience on this board is the most extensive I've come across for oral cancer.

One day at a time ya hear? Make sure you're seen at a CCC. Like others have already said. Treatment is brutal but you will survive!

"T"

Kristen,

Sorry you have to be here but believe me this site is and will be worth it's weight in gold as they say.

Try and create a Signature Line as soon as you can. It will help everyone as you post.

Don't worry, you know more than I did when I started out, and I'm still learning. p16 is a tumor suppressor gene, used as a tumor marker which over expression or under expression is an indication of prognostic factors in a number of cancers, and non HPV SCC is under expressed, but I thought over expression was good then, but it gets confusing with p16 involvement with HPV HNSCC, which may cause an over expression of p16 with the oncogenes E-6, E-7, and p16 is also used as a surrogate marker for HPV in HNSCC.

You may want to speak with the doctor if this was a HPV staining test or just the tumor marker. If it is HPV, as mentioned, they should look at the oropharynx, especially the tonsil, BOT. Where on the tongue was the lesion? The anterior tongue part is the front part, and considered the oral tongue, and way back is the posterior is where the BOT is, and part of the oropharynx, and difficult to see.

Welcome to OCF! Sorry you have the need for the forum but Im glad you found it so we can help you get thru all the hurdles you are facing.

I have sent you a private message (PM) with a link to help you make a signature. It has tons of useful tips about using the forum too.

Try to relax, we will help you with everything! Lets see if we can help you to not be Kristen the Terrified anymore. Best wishes with everything!

Hi, I started on a signature, but still don't know enough to fill it up properly. The path report said something about a stain, but at least one of the docs seemed positive it was HPV. It feels like the surgery went down the entire right side and underneath of my tongue. Not sure how far back it truly went, but the last doc was trying to examine it and could not poke far enough back to check it without gagging me. Of course, post surgery it ached from my ears to the base of my throat, but that may not be a fair assessment.

Obviously I have a lot more questions they need to answer, which is more than I knew before. So thank you!

Kristen

Imunostaining. It's used as a HPV testing alternative.

Very bizarre you're the second HPV + oral tongue cancer patient this week. You are correct HPV + is good while poor differentiated isn't. Good luck on the pet!

This is interesting. The risk of HPV related oral cancer is so low that the NCCN guidelines doesn't even have HPV testing as a guideline, oropharyngeal does. Another is oral tongue cancer usually spreads literately, not to the posteurier, back. Oropharyngeal BOT cancer can move forward. There can be p16 over expression, without being hpv positive with this type of testing. Other factors have to be considered, like site, other indications for HPV.

Good luck with the PET/CT. Don't exercise two days before the test. A low carbohydrate diet 24hrs before test. No food, medicine after midnight. No chewing gum, brushing teeth, mouth rinse day of test. The PET is so sensitive it will show uptake from too much talking. No having lifting. Some say drink 16 ounces of water an hour before appointment, but mine always gives you more water before testing. They will test your glucose and if too high, the scan won't be done. After the 18-FDG injection, they have you relax. Mine was in a quiet, dimmed room, and give you a warm blanket, and cold can effect test. My last one in February, my facility, gives contrast for the CT part, but I can't have CT contrast due to my kidneys, so they had to speak with the doctor, and had my PET/CT was without contrast.

Thank you for the info. I was told to take my meds, as they are for anxiety, but nobody warned about exercise. Will take it easy today in prep.

Kristen

HI Kristen,

Welcome to the forum and sorry you had to join us.

I'm also a mum of two (4yr boy and 6yr girl) and am 39 years old and am just 2 weeks out of surgery (BOT and ND) and have chemo/radiation starting in about 2 weeks - I sympathise with you but a saying that's helped me is "It is what it is"...

We can't change it, we can just deal with it and make the best of the hand we've been dealt. This group is fantastic and have already helped me so much in the short time I've been a member so come back here often. We understand what you're going through and can offer advice and/or comparisons when needed.

Thinking of you and keep us posted.

Kindest regards,
Melissa.

Hi, Kristen.

I, too, am a young person, without risk factors (not even HPV +) and had 2 totally different types of oral cancers. One on the oral tongue and one in the tonsil.

Take a look at my signature for more details.

All I can say is that I am much like you with the anxiety disorder at baseline, so I didn't take too well to getting these diagnoses and facing surgeries/treatment.

The most important thing to do now is to get under the care of an expert medical team that specializes in head and neck cancer. In a few posts above "fishmanpa" gave you a link to the rankings of the hospitals. There is also a list of CCCs (cancer centers) so you can find one that is good near your home. Even if you have to travel a bit or stay with family/friends closer to the hospital, it could make all the difference in the world with a good medical team.

I know how you must feel, being a younger mother with a husband and kids. I was pregnant with my second child when I was diagnosed the first time. I was terrified, but all turned out well and I have a beautiful baby boy in addition to a 4-year-old daughter. I'm not going to say this is easy, especially with little ones. Rally your friends and family quickly and tell them exactly what you need and when you need it. There are websites that can be used to organize rides, cooking, cleaning, childcare, etc. with all of those who are will and able to help. I used www.helpinghands.org. It was very helpful to me. If you need help with that, I can help you.

Please feel free to contact me through the forums or private message me (PM).

Best of luck,
Kerri

Thanks, Kerri! Before they knew it was a panic disorder back in 2000/2001, they kept asking if I was pregnant (the nausea) and running tests. By the time they did an upper scope to check stomach issues, they had stopped pestering me about pregnancy. . . except then I was, and we did not know. That baby is now 11, and seems fine. Luckily his current Scout merit badge work is Cooking, and he is enjoying being helpful. As soon as I know what will happen when, I will turn my Sunday School ladies loose. I may lose taste, but at least my family will eat well!

I posted my frustration with the docs arguing clear margins over in the diagnosis forum, as my best guess for where it belonged.

Very very glad this forum exists.

Kristen

Hi Kristen, I too am a young person who was diagnosed with SCC of the oral tongue. It also took my docs several months to diagnose me bc I had no risk factors. Just wanted to let you know I remember feeling like you are now. I am now two years post surgery and currently NED. You can make it through this!