Found a growth on the underside of my tongue about 8 weeks ago. It first showed up right after I had some wisdom teeth extracted so I figured it was just some irritation from that. After my gums healed but my tongue still hurt I decided to see my regular doctor just to get her opinion. She tried to get me into an ENT right away for their opinion, but since it was a friday after a holiday(july 5th) no one could get me in until monday. Monday rolled around (finally) and I got a call that my appointment had to be postponed because the ENT had called in sick that day. My doc made some calls and got me into someone else Tuesday morning, did a biopsy then. Today I finally got the rusults - squamous cell cancer. Not sure of the stage yet, did a CT scan today, then seeing a specialist Monday. It's been a roller coaster of a day calling all my immediate family. Not really sure what to do in the meantime other than try not to dwell too much. If there are any other younger survivors/patients on here that wouldn't mind sharing your experiences I would appreciate it as I can't really find too many stories in my age group online. Will be sure to post updates as I get them. Thanks

Sorry to hear of your diagnosis, but you have found a great group online here that will help you get through treatment.

I likely had a different subset of oral cancer from you. Mine was caused by HPV and originated in the tonsils, while most cancer in the front of the tongue is not HPV related. Let us know what the staging is once you find out. Generally for smaller tongue cancers without lymph involvement, surgery is the 1st treatment modality. I underwent chemoradiation, so our treatments may not be similar. However, I am 25, so I understand the shock of being diagnosed at such a young age. It sounds like you received a diagnosis quickly from onset of symptoms, which is great. It took me 3-4 months to get a diagnosis. Let me know if you have any questions for a younger oral cancer patient. I know there are a few oral tongue cancer survivors here who were diagnosed in their 20s, and hopefully they will chime in with their experience

It seems younger folk seem to bounce back a bit faster and hopefully that is the case for you. I know my life is starting to return to some sense of normalcy. Keep that end in mind - you will beat this.

Where are you being treated? I'd recommend getting another opinion once you get some more information on the diagnosis and the recommended treatment. Comprehensive cancer centers are great places to have opinions and treatment as their oncologists see many cancer cases each year.

Thanks for the response Andrew. I'm lucky enough to be in an area with some pretty good treatment options. My appointment on Monday is at University Hospital in Cleveland. I took a look at them online and it looks like they have a pretty good team there. Then there's also the Cleveland Clinic right there too, so like I said, I am at least blessed with options in a fairly close area.

Welcome to OCF! Im very sorry for your SCC diagnosis! You are in the right place to get not just correct medical info but also moral support to get you thru the upcoming hurdles. Dont worry, stick with us and we will help you every step of the way.

Best thing you can do is to go to a comprehensive cancer center (CCC) and then get a second opinion at another one. Your odds are much better at one of the countrys top CCC's. Here is a list to help you decide what works best for you. Some patients will travel across the country and stay at special lodging next to the top CCC's. These rooms are usually either free or very low cost to cover a meal (like $5 or $10 a night). There are even airlines which will fly you for free. Let me know if you need the links for these services.

CCC List

Anyone who offers their assistance to you write down their name and number. Start making your list now. Anyone who offers help tell them when the time comes you will call them and let them know how they can help. Going thru treatments can get difficult so you may need someone to run errands or to drive you to your appointments.

The upcoming weeks will be busy ones with many appointments with many new specialists. You will want to get a full blood count including thyroid prior to starting any treatment. You should also see your dentist for a full check up and any teeth that are questionable will need to get pulled. You will need flouride trays made if doing radiation so call on Monday for your dental appointment as this takes a few weeks. Take someone with you when you can as many times our minds tend to shut down after only hearing so much. Here is another link to help you thru your first appointments.

Diagnosis Link

You may want to start eating all your favorite foods now. Gaining a few pounds is a good thing right now. Depending how you are treated, your sense of taste could change or eating could become difficult so eat everything now and have no cravings going into this. For most of us these changes in eating are a temporary issue.

Best wishes!!!

Sorry to hear of your diagnosis. As Andrew mentioned, age is a factor in recovery. U.S. News Report also ranks the best hospitals in all specialties from thousands of hospitals throughout the country. Cleveland clinic is tops in many specialties, including number 5 in cancer, and four in ENT. Good luck.

Andrew sadly there are quite a few younger people here with a similar dx I'm sure they'll pipe up and make themselves known - our youngest here was dave tyssen - I think at was his last name. He was 18 at dx - and he just got married a while ago. He's maybe 3 years out now or close to it. There are others - Emily P, Brazilian girl too. There was a young school teacher from New York last year who has done his treatment and moved on - he's not here a lot of the time. Angelia, and Kerri - were both in their late 20-30s.

I am older but with a similar story - see my tagline at the bottom.

One thing I want to say to you because you are young is to educate yourself so you can advocate for yourself. Do try to be treated at a CCC - the drs. there eat and breath your type of dx - this is what they do. Not saying other drs at other institutions aren't good. But you want someone who has seen a lot of this cancer.

Standard treatment for oral tongue cancer is surgical removal of the tongue area - and a graft - if needed - depending on the size of the tumor - with possible removal of certain nodes on the side involved. The neck dissection as it is called is often precautionary, because what shows up on a scan has to be a certain size - mocroscopic cancer there would be missed - so most Surgeons will take he nodes, since they are a jumping off point to the rest of your body, so removing them is kind of a stop gap.

If your surgeon says its a small tumor and doesn't want to take your nodes - that's fine just keep a close eye on them and if someone happens like one swells high tail it back to him ASAP. (It often happens after the original tumor is removed a node will pop up because sometimes the tumor has seeded to the nodes but has stayed dormant)

If he does remove your nodes and any cancer is found in them you may then be referred to a radiation oncologist - they will recommend you for radiation and possibly chemo. Tx is usually anywhere from 30 - 35 days of radiation and 3-6 bags of chemo depending on the regiment employed by your hospital. (Radiation is given daily for 5 days with weekends off) this eats up 6-7 weeks of your life and radiation is cumulative so it is actually worse for the first two weeks post treatment.

Surgery though it sounds daunting is a quick relatively easy recovery. It's radiation that can have lasting long term effects. Regardless, it can save your life so if its recommended then its often for a good reason.

One thing that I have noticed is that younger people tend to have a fairly aggressive form of this cancer - so they may throw the book at you to be on the safe side.

Welcome... Though its scary to have to be here - you're in a good place. Eat up and enjoy your food now. Surgery will put you out of commission for up to 14 days in the eating department, and radiation if offered - you'll have possibly 6 weeks to heal and bulk up a bit, then eating will likely become pretty hard for a good few months - hugs and take care.

Ps - you want to know the staging, differentiation and spread. This will give you some idea of the type of treatment you will be facing.

Sorry about the Dx but you have come to the best site possible. We will help you through whatever Tx you decide upon and your recovery. Unfortunately it is now NOT uncommon for people your age to get this cancer with or without a history of tobacco use. You don't mention tobacco but if you are a user you must stop NOW.

Danbert,

I'm sure you are stunned from hearing those dreaded words. Be calm and figure out what you have before you rush into anything. There are literally a million possibilities but truthfully your options won't be known until more workup is done. Stay away from the Internet if at all possible as fear of the unknown may take you to dark places you don't need to go to. As you learn more from the doctors you will have some time to seek out a second opinion and help facilitate the development of a comprehensive plan to beat the beast. Hang in there, this is one of the roughest of times, I'm sure.

Ed

Hi Danbert,

Having been here for a few months, I've seen a few of these posts. Sorry you're here but it's a great site for info and support. We've been through what you're about to go through but being as young as you are, you should do well and recover quickly. Once you know what your official diagnosis (Dx) is, post a signature and update as you go. It helps us understand where you are.

I'm not going to sugarcoat it, treatment sucks! You'll probably be getting radiation and possibly chemo. You've gotten a lot of good advice already. It's good that you're being seen at a top ranked cancer center. Not knocking other hospitals or doctors but a CCC sees more cases and has access to techniques and trials unavailable elsewhere.

There are a few younger members I've seen here and on other forums. Try to stay away from Dr. Google and hang on... you're in a for a hell of of a ride!

"T"

Hi Danbert, Sorry to hear of your diagnosis, I have some thoughts that haven't been raised yet.

1. You will probably be warned to advise your Oncologist if you notice any tingling or numbness in your extremities. Take this seriously, pay attention to any strangeness you notice in your toes or fingers and tell your oncologist at once. These are warning signs that the chemo is causing neuropathy (killing nerve cells) and you want as little of this as you can get away with.

I've experienced a significant amount of neuropathy in my toes, and it's permanent. At my age, no big deal as I won't have to endure it for several decades, three years at most. But the thing is that I was looking for "tingling or numbness" and that's not what I got. What I got is "Strangeness" that can't be well described except to say that it feels a bit like my toes are being squeezed hard from the sides. I attributed it to my shoes(!) or the covers at night.

All of my chemo (cisplatin; carboplatin & Taxol/Taxetere; and lately, Xeloda (a pill form of a drug very similar to 5FU)) have cost me hearing losses. I was quick to tell my oncologist as soon as I noticed each loss, that's why I list "Taxol/Taxetere." I was changed from Taxol to Taxetere mid-course because the later has less neuropathy associated with it.

2. If you don't work out regularly, start ASAP. I have experienced massive nausea under Cisplatin (which you will probably start out with), but I was unable to work-out during the 6 months from dx to finally having my implanted mediport removed, and for 90 days, I could not retain more than a single bottle of Ensure plus (350 cal) any day. I went from a very solid 192 to 154 during that period.

I've had three recurrences, counting the one that showed up in June and for which I am now getting Xeloda again (Yea Pills!) None of it has caused me the least bit of nausea or made me feel bad in any way other than getting exhausted early at the gym.

And I'm 74.

And to follow up on Cheryld's advice, you need to start eating at least 2500 cal a day. Simply surviving this, healing and dealing with cancer treatments, requires huge energy expenditures. 'Nuff said.

Drink at least 64 oz water daily. That's a minimum. Like working out (any vigorous, I repeat, vigorous exercise elevates the metabolism and speeds the passage of the toxic chemicals from your treatment through the system. Water is needed in this process, drink lots of it. Get a 64 oz bottle and work on it all day.

Best of luck to you!

Bart

edit to give proper credit to Cheryld. Xin Loi.

Thanks for all of the advice and encouragement. I promise to get my signature up as soon as I get my official diagnosis on Monday. Also wanted to clarify that I'm a non-smoker/tobacco user of any kind and fairly active so trying to stay optimistic about recovery.

Hi Danbert, how are you doing? Just saw your message and i will be glad to help. Just like you i was diagnosed with tongye cancer in my 29s, also at the right side and no risk factors. Almost 2 years later here i am, with a pretty normal life. Exercising a lot, eating well and talking as crazy. Im not saying it was easy, i also tought i was not going to make it. If you want i can support you throught facebook or email

Hi Danbert. I was 31 at diagnosis. Two years after surgery I am still cancer free. I had surgery followed by radiation. Please feel free to ask any questions or look me up on Facebook. Best of luck to you!

Welcom Danbert, I am at UH at the Mentor campus. I also looked at Cleveland Clinic as an option. Its a tough call, both are great options. Talk to both of them. Keep us posted.

First off, A very big thank you to everyone responding. Just knowing that others have come through this is a huge help for my sanity and in turn, my wife's sanity.

We just got back from my appointment at University Hospital and I was very impressed with everything and all the staff there.

The doctors said they saw a few nodes that looked suspicious to them so they are putting me at Stage 2 right now but say it may go up to Stage 3 once they get a better look at the nodes. We scheduled my surgery for 8/20/13 which will include a partial glossectomy with reconstruction from either wrist or back of arm, then from thigh to cover that. They will also be doing a right side neck dissection to check nodes, and will be doing a temporary tracheotomy and PEG to help take pressure away from my face as it heals. After surgery is when we will be discussing possible radiation.

Thanks again to everyone for your help. I'll be sure to keep updating as I get more info, or asking as I need more help. It still amazes me that a trauma in common can bring strangers together like this. You guys rock!!!

The trache they put in was the worst part for me. Bring something to write with. hugs and good luck. I would also push them for an earlier date if possible,

Hi Danbert - My son was also Stage 2 with no history of tobacco use. He had SCC under the right side of his tongue and had 1/6 of his tongue removed. He has been cancer-free for 6+ years now. It's good if you can bring someone with you to appointments so they can help you remember what the doctors tell you and check back with each other later. You can also browse thru the main pages of OCF and write down your questions ahead of time. With all the great people we have here to support you and guide you, you will do just fine!

Danbert,

Hang tough with that great positive attitude and rest assured we will be with you 24/7 throughout your treatment and your recovery.