Hello everyone, I posted a week ago about my tongue biopsy last week. I got results today (on my 30th birthday). I have cancer, the biopsy showed that it is just stage 1. But I have more x-rays, and blood work tomorrow to make sure it is not anywhere else.

What questions should I ask. I have no enlarged lymph nodes that they can tell (good news). I have never smoked in my life, and I drink on VERY rare occasions, I have never even had a cavity.

It is not base of the tongue, but like I said, I don't know much. Guidance is greatly appreciated. Thanks again.

Hi las,

I went through the same kind of thing, 35th birthday and right before dinner at a steakhouse I got "the call". Cancer in my tongue, left side and it was stage 3. I scheduled surgery as soon as I could and had a radical neck for lymph removal, glosectomy with reconstruction, a trache tube and a feeding tube. I know it sounds like a lot but really it was'nt that bad. I was freaked out when I woke from anesthesia but after getting used to everything I was and still am very thankful for all the people, my mom and the hospital for saving me. 6 months later I had a recurrence and had another radical neck dissection with chemo and radiation a month after. On June 13th I will be a year past finishing chemo, here's what I can tell you:
1)Listen, take notes, write questions down and bring them with you to be answered. Doctors try not to bombard you because there is a ton going on and its a lot for you to remember so writing it down helps.
2) Get plenty of water through the whole thing. I had a bad time with constipation, keeping up on your water will help keep you somewhat regular. Its bad enough you've just got done with surgery, not being able to "go" just adds misery.
3) Dont workout or eat a big meal before your surgery cut-off window. I had a hard workout and ate a large meal before the 24hrs cut-off, that was a bad idea. I woke up from anesthesia and my arms/chest were cramped to my body. The large meal 24hrs prior made the constipation from the drugs waaay worse.

I know Im forgetting some stuff but someone will fill in the blanks for me.

Above all, make sure you trust your surgeon and are confident in him or her. After they put you out you're in their hands, so if you feel good about him/her you'll be relaxed.

Try to take battles as they come, dont get worried about the post surgery "future" stuff you read on here. Somethings (side effects) might not happen to you.

I am so sorry to hear of your news. Makes any qualms you had about turning 30 insignificant. I am a carer so keep that in mind when considering advice. Number 1, go to a comprehensive cancer centre for care. Number 2, do number 1. Number 3, accept all help and support available to you.

Questions you might ask -- depends on some of the other test results. You will want them to go over you pathology report in detail. This might include depth of invasion, cell differentiation and maybe evidence of perineural invasion. Maybe HPV status although HPV is more associated with cancers more towards the back of the mouth. Based on the results of your follow up tests, sometimes they recommend surgery alone, sometimes you have to decide whether or not to go for more aggressive treatment and that's when the questions come rolling out because at that point there are some mighty big decisions to be made.

You must be reeling from all this and your mind filled with darkness and despair. While this site is helpful, it can be scary at the same time. Try to keep things in perspective. The most frequent posters with best advice is from people who have been on this merry go round for more than one turn but there is no reason to think that will be your lot. Prepare for a huge mental fight, perhaps a physical one, too. Take you best shot at the Big C and allow yourself to be optimistic that you will kick its nasty behind.

Wishing you the best. Laura

lam007 also reminded me of one thing you absolutely cannot do with out: Someone to care for you.

I am a lucky man to have such a great Mom, she took care of me through the whole thing and it would've been a nightmare without her. I cannot emphasis the importance of a care giver, if it can be a close relative that's the probably the best IMO.

The doctor today said that if there was no proof of cancer anywhere but my tongue that it would be surgery only and no chemo/radiation. Do doctors opinions on how to treat Stage 1 cancer vary that greatly?

Las3645 -

I think the most important thing is to be sure you have access to a medical team, not just a single doctor. Have you had a CT or a PET scan yet? How can the doctor know the cancer hasn't spread without a full set of diagnostic tests? Things are going to get crazy and scary but remember, you are an individual and deserve to be treated as one. Ask questions and press for answers if you aren't satisfied. For starters, ask the doc if opinions on how to Treat Stage 1 cancer vary that greatly, okay?

I go in for a CT tomorrow. So we have another appointment Thursday to go over CT, chest x-ray, jaw x-ray, and a physical. Keep it coming thanks.

Check this document as it is regarded as a key reference guide for describing staging and standard of care treatment options.

what document?

Here you go. It is available without having to create an NCCN accoutn click NCCN guidelines here

Welcome to OCF - so sorry you joined our club.

Check out the OCF main pages - the best and most up-to-date source of info on oral cancer. Both the main pages and the forum have search functions - lots of good information contained on OCF and a terrific resource.

Great advice so far, and as others have said, go to a comprehensive cancer center. A medical team approach is better and where you are treated does make a difference!

For each appointment have a written list of questions to ask, bring someone with you to take notes, and record the conversation if the doctor will allow it. Ask for copies of any and all medical test results. Very helpful to have to review later and if you seek a second opinion (which is another recommendation). Get a notebook or binder to keep all your information in one place.

Ask if they will be doing "frozen sections" during surgery, which is a biopsy done during the surgery. Helps to make sure they "got it all" during the surgery. Use the search function on the OCF home page for more info.

Keep in mind no question is a dumb question, both to ask your doctor or here on the OCF forum.

Wishing you the best!

[quote=las3645]what document? [/quote]
I expect he's referring to the treatment guidelines prepared by the National Comprehensive Cancer Network -- an alliance of 21 top U.S. cancer centers.

Hi there I answered your other post in introductions... And gave you a list of things sort of. I will reiterate two of the things I said there... go to a CCC if you can. Moffat supposed to be a top place to be treated for H&N cancers. And this cancer can be aggressive. Even if it doesn't show up in the nodes on a scan it does not mean it isn't there. It can exist microscopically. I had no more than six weeks pass between dx and surgery. My nodes were clear on two cts the day after dx. Over christmas (7 days later) I found a lump nestled under my chin about 1 cm. I had an MRI a week after that. It said negative for spread. My dr. said I don't care. I'm removing 40 nodes regardless. The day of surgery I showed it to him - actually put his finger on it. He said doesn't matter it's coming out. That node was positive for cancer, and had broken through the node into the tissue (in less than 5 weeks). Throw the book at it the first time out if you can. best of luck...

The waiting is killing me. How do you handle all the waiting involved? Or do you just learn to live with it. It has been 4 days since dx, and feels like it has been a year. I just want to walk into the dr office or hospital and demand to know my CT/x-ray results. I will hopefully find out today.

Ugh I feel like I am going to be sick.

All right here are the results from my CT. It showed nothing in the lymph nodes, HOWEVER, it showed multiple nodules in my thyroid (and a mildly enlarged thyroid). I am now going to an oncologist team in Jacksonville to further investigate. Additionally, it showed that my tonsils are asymmetric.

Help, guidance? Anyone ever had nodules in thyroid. Thanks.

No on the nodules and its possible its not ca maybe something benign they don't know without a biopsy. When are you seeing the team? Best of luck

I will be having the appointment on Tuesday. Hopeful that it is nothing.

Since you are in Florida, Moffitt in Tampa is one of the leading cancer centers in the US. Several members have successfully been treated there including davidcpa. He is on a small break right now but he has personally walked several patients into that CCC and supported them thru their treatments. Its worth looking in to.

Hi Lori,

Sorry for your news. I was 39 at diagnosis. I had surgery, lost half my tongue, reconstructed with my forearm. I was fortunate in that there was no further spread, so at this point, no chemo/rad either.

The good news is I was back to work within 3 weeks of my surgery (I'm a lawyer), and full time not too long after that. Things are back to normal, although I am much more cognizant of my mortality, and have started working to live, rather than living to work.

Cancer sucks, but it is something you can fully recover from. Good luck on the upcoming tests, and keep us posted.

Hi Lori,

Yes, time does seem to stand still and there is a lot of waiting when you get a cancer diagnosis, and it really adds to your already high anxiety level.

I also found out I had thyroid nodules shortly after I found out I had OC. Initially my ENT suggested surgery to remove half my thyroid (side with the nodules); however, I had a number of tests conducted, consulted with an endocrinologist and a few other doctors, did not have surgery and it was NOT cancer.

In my case it turned out to be a �fairly common� thyroid condition called Hashimoto�s thyroiditis. It�s been a number of years since this happened, so I don�t recall the exact sequence of events that lead to the diagnosis of Hashimoto�s. The tests I had included fine-needle aspiration (FNA) biopsy, blood tests (TSH and a few others), ultra-sound (to periodically measure the size of the nodules), thyroid uptake scan, in addition to CT, PET and MRI (which were done mainly because of the SCC). To monitor this condition, many of these tests are repeated periodically.

Do some research on thyroid conditions and tests before your next doctor�s appointment. One test that you should have is the TSH blood test. If you end up with radiation therapy, the thyroid is often compromised and many of us need to take daily medication (ex. Synthroid) as a result. Having the TSH now gives you a baseline normal reading for you. Also ask about doing a FNA biopsy of the nodules to determine if it is cancerous or a benign condition.

A good on-line resource I found is the American Thyroid Association.

I know this is a stressful time for you and we are here to help you! Good luck with the tests and keep us posted.

Las,

Sorry to hear you have cancer you've found the right forum for information and the people here are a great help.

I had the same Cancer as you. I went to Moffitt Cancer Center in Tampa. I had surgery and my lymph nodes removed from my neck. My CT/PET Scan showed no cancer in the lympoh nodes. My surgeon suggested to remove some lymph nodes from my neck because cancer cells are so small a CT/PET scan doesn't detect them until the size of a nickel. It was my call and I went with what he said, he's the surgeon he knows what he's doing. He removed some of the lymph nodes, no cancer.

I'm glad I went with his suggestion I don't have to worry and wonder if there was cancer in my nodes. You might want to discuss this with your surgeon.

The incision can't be seen and you can't tell I had them removed my neck looks the same as before surgery.

Take care and keep us posted.
Connie

Susan, they did talk about doing a series of tests at the appointment on tuesday including a FNA. And possibly a nasal scope. I might consider Moffit because of everything I am hearing about them, but I first want to hear what the doc at Shand's says.

The good news is that everything is being caught super early.

Hi just a heads up - an FNA - is only as good as the tissue they hit.

Very true Cheryl! I do feel like I am feeling very confident because everything was caught super early. Part of me feels like I should be more concerned, the other part of me feels that there is not much to be concerned about at this point. I am feeling too confident?

Mine was caught super early too but I went with my Surgeon suggested and today no second guessing.

Keep us posted

Connie

Here is my other thought. I can't get the "I have cancer" thought out of my head. Are these thoughts going to be here for forever? My other thought is about telling people, I feel like such a faker talking with people and they have no clue what is going on, I just keep talking to them about other things. I am a teacher, do I tell my students I have cancer. Obviously, I am going to be out of school for a little bit to recover from the surgery. Do I make an announcement on Facebook? This mental side of it is exhausting. Thanks. I appreciate all the guidance I have gotten already.

Everyone is different, and do what is most comfortable for you. Several cancer ribbon sites, maybe here too, offer suggestions in telling others like immediate family, children. distant relatives, co-workers, employers, acquaintances about your diagnosis, treatments. Not everyone needs the same amount of information either, and is based upon need, and everyone has to respect that. Good luck with everything.

[quote=las3645] I can't get the "I have cancer" thought out of my head. Are these thoughts going to be here for forever? [/quote]

Hi Las,

I just read your posts. Sorry you had to join the club but you'll find this site to be a great support system and source of information.

You pose an interesting question. When we hear the words "You have cancer", it's a feeling one cannot quite describe in words. Before I saw the ENT about the lump in my neck, I knew in my gut it was cancer. I had convinced myself it was some sort of lymphoma based on the self diagnosis sites and doing way too much reading on the web. I asked the doctor to be straight up with me. After his initial examination, the Dr. looked at me and said "I think this is cancer. We don't know what type but I've seen enough of this to tell you it is cancer". Despite having convinced myself, hearing those words still made my stomach drop.

I had a FNA and the results were indeed cancer. But it was SCC Head and Neck. I had never had heard of it and was actually relieved at first, that is until he explained the details. There are no "good" cancers but SCC H&N is pretty nasty!

Your life changes the moment you hear those words. Then it was the waiting. Yes, a day seems like a month! I was Dx's on Nov. 30th 2012 and between 2 surgeries looking for the primary site and another emergency surgery to stop bleeding, I finally started actual treatment on March 14th., 30 rads and 6 weekly chemos (Cisplatin).

Everyone is different in how they process this but I know not a day goes by that I don't know I have cancer. the side effects of the surgery alone are enough to remind me a few short moments after awakening.

The key is your attitude. With cancer, everything else around you is out of your control. The only thing you have control over is your attitude. Staying positive is a very large part of the battle and a vital aspect.

Concerning telling others? There are as many opinions as there are people posting. There is a thread here concerning that. It's a personal choice. I chose to go public in a big way. For me, it was the right thing. The support and positive vibes have been awesome.

It's wise to seek a 2nd opinion, especially at a Comprehensive Cancer Center. Research the facilities you're considering. Here's a link to some good info: http://health.usnews.com/best-hospitals/rankings/cancer

Good luck with everything. Positive vibes and prayers.

"T"

Lori, what I would suggest is keeping this quiet until you have it straight in your own mind. Once you tell people it will spread like crazy. Once its out you cant take it back so proceed with caution. I would suggest if you "go public" with your news then wait until you have your treatment plan.

You life is about to change dramatically. You dont need to add the stress of always discussing your medical condition as part of all your conversations. This takes alot of getting used to.

You have found a whole new bunch of friends right here on the OCF forum. This is a safe place to come to ask questions and if you need to, to vent. We understand what you are going thru as we have been there ourselves.

If you are overwhelmed, see your family doctor and ask for anxiety meds. Many OC patients (and quite a few caregivers too) have needed a little help to handle this major change.

Staying busy will help keep your mind from worrying so much.

Best wishes.

Lori,

I was "outed" by a friend, who told someone, then they told 2 friends, etc. Next thing I knew rumors were flying, and everyone had heard some version of the story, which was much harder to control.

I ended up putting a post on facebook to stem the rumor that I was dying. I actually found it calming to talk about it, as it was then just information, not this overwhelming "thing". Everyone is different though, so you have to do what feels right for you.

The "I have cancer" starts to fade, although it pops up again when you get treatment, check-ups after or think anything is off. I truly believe that your attitude toward this will have a huge effect on how things go. I approached it with the idea that this was a problem to deal with, and I would deal. Then I did. That's not to say there aren't hard times, but I thought about all the other people in the world who have bigger problems than me (ALS, dementia, which can't be fixed - no food or home or job), and remembered that in the bigger scheme of things, I am very lucky.

Lori,

I found it difficult to tell people that I had cancer. I had to inform my boss because of taking time off from work. But he was bound by company policy and I believe also HIPA laws to not say anything to my co-workers. I eventually told some of my co-workers after I returned to work.

I told friends and family also eventually. Since I've been on the cancer journey for a number of years including a recurrence and multiple surgeries, I ended up sending out updates via e-mail to friends and family. It was much easier for me to do it this way then to call everyone separately and answer the same questions over and over. There are also other websites (I believe one is called Care Givers) that you can register on and post updates. I know of number of people have used this as a way to keep friends and family informed. Facebook is also another option.

It is up to you who want to tell and when. But even if you tell friends in confidence, it will probably hit the rumor mills.

If want to spread word of something, true or not, just tell one person, and everyone will know lol.

I agree Paul. And it you tell them it is a secret, the word will spread even faster!!

I did my big share on Facebook, with co-workers, and students' parents this week. I have to admit it has helped by putting it out there. However, it has made it all very REAL. It was real before, but now it's out there.

All my co-workers have been absolutely amazing. I work at a private Christian school, and they are surrounding me and family with prayers. I truly have the best co-workers in the world. I am also thrilled that people are still treating me the same. I am still Lori, not cancer Lori, just good ole Lori.

Anxious for my surgery next week. Thank you all for being there for all of us newbies.

Do yourself a big favor and write down the name and contact info for anyone who has offered to help you. Tell them when the time comes you will let them know what they can do to help.

Best wishes next week!!!

Hi Lori,

I think bringing a thing out into the open strips a lot of the fear away. Whether it's us or others that are uncomfortable talking about it, it will probably bring a sense of peace just being able to openly talk about it.

Be sure they test you for HPV-16. It can dramatically change your treatment options.

Frank

Hi Lori, my case is almost like yours, and even the same age. I was diagnosed 2 months before my 30 birthday. I also had stage 1, no nodes invvolved. I lost 2 x 3 cm of my tongue, pretty normal life just difficult with "R" letter. Different that you I FREAKED out. Proud of you that seems much more calm than me.

I thought I was going to die in weeks, but it�s been one year and four months and here I am, alive, working hard and trying to do things I love. Just came back from an amazing trip in San Francisco and focusing on professional and personal projects.

Cancer sucks but early stage is really good as you mentioned before. If you want to ask anything, feel free to contact me

las3645. Sorry to read that you have the beast, but at least it is treatable and hasn't reached the lymps. I hope all goes well with you next week.

orober, even with lymph node involvement oral cancer can still be successfully treated.

Well, surgery went differently than planned. The good news was the tumor was much less invasive than thought, less than 1 cm deep! So they made the decision to NOT do the selective neck dissection, due to the smaller tumor. It does make me nervous being that the doctors said a selective neck would reduce my chance of cancer coming back.

I am now just recovering. Eating LOTS of soup! Nothing quite tastes the same, I am surprised at the random pain i have. Jaw hurts (i notice I clench me teeth a lot), teeth hurt, tongue doesn't hurt as much as it tingles all the time. And of course I talk really funny, I have an especially hard time saying sounds with d, s, t, th. I have to think really hard before saying any sounds. Thanks for all the support! Can't wait to hear the doc say next week that I am cancer free.

Lori, that's great news. Lucky you. I think your Drs are thinking of you and your quality of life. Neck dissections really do impact on the shoulder and neck muscles. Why inflict that on you when it is not necessary?
Many people have unnecessary neck dissections and proudly proclaim that all nodes were negative for cancer - then live with the consequences of the neck dissection. If you do not have any nodes on your scan what is there to remove?
Be reassured. You may like to see a Speech Language Therapist to help you with the speech issues. I'm sure all be resolved in a matter of time.
Tammy

Lori, great news! Don't worry about the speech and taste, it will come back. The speech is mostly due to the swelling, which takes a while to come down. I would highly recommend speech therapy. I found it very helpful.

My tongue still tingles, but I'm so used to it, that I don't really notice.

I was always a grinder as well, but it did get worse. You can get a plastic splint that you soften in hot water to mold to your teeth to help that.

Good luck next week!

Thanks everyone. I am beyond grateful that the recovery is much easier now that I didn't have the neck dissection. It's so hard not to be on edge, but I am learning to appreciate everything! Thanks for the support.

Lori, you are probably HPV+, so the prognosis should be the same with, or without, the neck disection. I am 7.5 years cancer free and probably would not have been a candidate for a neck disection based on today's studies. I wish that I hadn't had one, but am appreciative of the science that got me here. Don't worry..all will be ok. All the best-Rob

Unfortunately, I am HPV- (who would think that was unfortunate). But I am sure all will go well!

Looks like you are one of the 7% who has no known cause. Ive seen many on here who are young, do not smoke or drink and are HPV- but they have OC.

One positive is your age will help you to get thru this easier. Younger patients usually recover quicker and can get thru things a little easier than someone who is alot older.

Dont worry, we will help you as much as we can.

Lori,

Great news... Your speech will come back give it time, my taste buds came back but not to the full. Some things I can't eat it wrecks havoc on my tongue.

I had the ND it didn't bother me. I still look the same and the incision is in a crease, can't be seen.

Best Wishes,
Connie

Hi there... hopefully you will get the all clear. If you do and they decide against rads and chemo keep a very close eye on your neck and in your mouth. They should be monitoring you frequently. But don't wait if you find anything out of the ordinary go see someone immediately. Best of luck!

Good news on the tumor removal. Did they state they had clear margins and got it all and stated you would not receive any chemo or radiation? Usually even with clear margins but unknown primary they are going to do one/both of these to ensure they kill what may be lurking around.

Good luck

They are pretty sure they had clear margins but sent the tumor away for addition pathology. I am currently being treated by Shands in Jacksonville, but will be switching to Moffit sometime late July/August (moving, getting new insurance thru hubby). I only spent one day in the hospital and recovery is going really well.

I am definitely going to be keeping a very close eye on this. I have a young son that needs a mommy for a long time.