I have had an "ulcer: on my tounge since August. My dr finally refered me to an ENT. They did a biopsy last Thursday. The results are in SCC. I have to go back for addl tests tomorrow or Friday to see if it has spread.

I am so baffled. I suppose I do not understand how this happened! Just turned 23, smoked for 3 yeart on & off about 1/2 pack a day or less. Decided to quit recently, I was just married!

I am just so upset & angry. Is that normal? What am I to expect? My dr says it is smaller than he thought so that was good news. I just pray it has not spread.

Shaylynn:

Welcome to OCF. You will find lots of support here to help guide you thru this. Many people here have been right where you are and will help you. We do understand its a very scary time for you right now.

You are young to have to go thru this, but its not unheard of. We have another active memeber who is your age and had a young girl who was only 18 here too. All have made it thru their battles. Being young will be to your advantage to fight this.

I know its very early in finding out and probably your head is spinning right now. After your get a PET scan that will determine if the cancer has spread and what Stage you are. From what you worte, it sounds like no treatment plan is set up yet.

My words of advice....EAT. Eat like crazy now, dont worry about gaining weight, just eat everything you want. Some treatments can be pretty rough and can affect your sense of taste for a long time.


Please feel free to ask questions. There is also the main pages of OCF which is full of important info.

may want to look at finding out if you have HPV, since your age and other risk factors seem minimal... but sometimes there is no known cause and it still happens. main thing is to face it and fight it head on. yes, getting angry is normal ... denial is normal ... they are all stages of dealing with something so traumatic. feel free to voice your worries here and let off steam when you need to - whatever it takes to get thru it we will be here to listen and help all we can.

ACk. I am 23 and just finished treatments at the end of July for stage IV tongue cancer so I know exactly how you feel. I think Christine is talking about Hayley. We both have blogs that we keep updated if you want to check them out (they're a good way to keep family updated without having to make phone calls). Mine starts back at the beginning when I got my diagnosis. You definitely have the age advantage for getting through this! Keep us posted on all your tests and treatment plans. The people on here are great and are super helpful. You can private message or email me if you have any questions or care to vent. It's a lonely world out there being young with cancer sometimes.

No one can answer why, but don't beat yourself up about the past! Stay positive - sounds like it has been caught very early and early detection equals a cure.

Many will tell you to make sure you get to a Comprehensive Cancer Center who will use a team approach to handle your cancer. I was diagnosed at 49 and can only IMAGINE how difficult it must be to say the words "23" and "cancer" in the same sentence. Yes it would be extremely normal to be angry and go through the "why me" stuff, but it won't help you move forward. Acknowledge the injustice of it all and focus on getting cured.

We are here for you and you will find such incredible support and experience here that you soon learn to post all your questions and fears. We understand and will assist where we can. Keep posting.

Donna

Shaylynn,

I am so sorry you have to deal with this when you are so young. Christine is right though that your youth may help you get through the treatments and recover more quickly. The other 23 year-old who posts here often (look for her posts under sobradley - you can find her posts by looking under the User List near the top of the page) should be really helpful for you. You'll know a lot more about what to expect once you get all of your initial tests.

Shaylynn,
Glad you found this site. At this point it doesn't matter what caused your cancer, it is not your fault. Mine was caused by the HPV virus.

I too was scared and upset when diagnosed. It is very normal and understandable. Did your ENT refer you to a Comprehensive Cancer Center (CCC)? If not, I would recommend you get to one near your home for testing and treatment. Please keep us posted as you learn more. We'll be able to let you know more about what to expect once you are staged and a treatment plan is put in place. Hang in there.

Thank you all for your responses. I am glad to hear everyone says my age may help things!

My dr. Said to eat too. I just don't know what to eat.I eat 1 meal a day and I am alraedy obese! Yikes!

I am a huge blogger so that - know will help.I am so thankful I found this site!

Eat everything that you have been avoiding because it was too "unhealthy." I can't even begin to tell you how many buttercream frosting cakes I consumed leading up to my surgery (they're my weakness). So, throw calories out the window and just eat whatever you want to!

Shaylynn,

I would recommend eating food that is good for you to help build up your immune system as much as possible and I would also recommend getting your fill of your favorite foods. Depending on your treatment, food may not taste good for a while after you're finished so you should enjoy it now.

Is the ulcer on the front part of your tongue?

Well there are two completely conflicting suggestions!!

Ha, yep. Definitely go for the protein though. It will help when it comes time for the surgery and all that. And veggies of course! And I still recommend those buttercream frosting cakes! Ugh. I want one right now!

I have horrid eating habits..only dinner at night. I will be trying to change that!

The ulcer is on the left side underneath towards the back.

Oh and no to the HPV question.

I have been taking hydrododone (spelling) I am scared to take it so much I have it can give you tummy ulcers. True?

Shaylynn, I have a friend who had SCC of her tongue at your exact age. She was in medical school, and she had her surgery and then continued in school through her radiation and chemo treatments.....can't imagine it....but she is just fine now, the mother of three children. Take things one day at a time. If you choose your caregivers carefully, you can relax some and follow their lead. I would recommend, like others, that you find the nearest Comprehensive Cancer Center for your treatment. Your psyche will thank you, as well as your body! Having the best treatment plan demands that you go somewhere where they treat lots of this stuff, and confidence in your treatment plan is vital to your sense of wellbeing.

Good Luck. You will do fine, though it is not the way you had pictured your first year of marriage. I'm betting that this experience will bring you and your husband even closer.

XO--Colleen

Hi Shaylynn,

My husband was diagnosed with scc on his left tonsil last May. Please pay attention to what everyone is saying about eating whatever you want right now. To read between the lines...if you are going to follow a standard treatment regimen you will probably lose 40-50 pounds. You need to have the reserves in order for your body to withstand that situation. Just a friendly suggestion. By the way, I love your name.

Kendall

Did they say what Stage your cancer is? Where on your tongue is it located? I like many also tested positive for HPV.

Don't beat yourself up. Most likely there was NOTHING you did or could have done that would have made a difference. It was just your body's makeup. The most important thing now is to get it treated properly and quickly. Where are you being seen?

My ENT is rec dr in Cinncinatti. I do not know where to even start if I don't like him. They have not done any scans so they do not know what stage yet. I am hoping to go today or Friday for more tests. I want to take core of this asap.

Shaylynn,

IMO you need to be treated at a cancer center that regularly deals with your type of cancer. Please get another opinion from a Comprehensive Cancer Center.

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I'll chime in here and recommend a CCC also -- The reason is that they will discuss YOUR case at a weekly tumor board meeting of various cancer treatment disciplines and recommend the best course of treatments for YOU -- Better having several minds looking at this from one perspective that just one!

Also, they will not only come up with the best treatment plan, they will also arrange post-treatment care for the side effects of the treatment.

BTW, as horrible as cancer is, the treatments do constitute a very effective weight-loss plan <big grin!>.

Shaylynn,

Since there is not an NIH (National Institute of Health) designated Comprehensive Cancer Centers in your area, you might try the following link for an American College of Surgeons CoC (Commission on Cancer) accredited Cancer Center.

http://www.cancer.org/asp/search/ftc/ftc_global.asp

Many CoC Cancer Centers are associated with large hospitals and follow similar methods as NIH Cancer Center (tumor boards, multidisciplinary approach, etc.).

Do check with your doctors and be sure the Cancer Center handles numerous cases of H&N cancer each year (around a hundred or more cases seems to be respectable case load).

Sheldon is putting up a story tonight bout a teenager who has been though surgery, radiation and chemo for oral cancer and is just now getting is life back together being a teenager.....

Shaylynn,

Being upset and angry is normal. We have all gone through that.

I have a different approach to what you should be doing now regarding eating. You apparently don't have your cancer staged yet. When this is done, a treatment plan will be made for you and I hope that will be done by a team of doctors at a Comprehensive Cancer Center.

If you are a Stage I, it is possible that your treatment may be limited to surgery only, as mine was. If that's the case and you don't have radiation and or chemo, any concern about gaining weight will not be needed. I lost only 15 pounds due to my inability to eat for about 10 days. I've managed to keep about half of that off in over 3 1/2 years.

So again, right now you should be concentrating on getting a treatment plan and once you have that, I'm sure you will get good advice from many here.

Good luck.

Jerry

So is it safe to say that a H&N surgen who specializes in H&N cancer would be a good place to start. Have him look at my scans...talk to him about options...needs to handle 100+ cases a year..What kind of things should I be asking him?

That's a good place to start but you may also want, depending upon your cancer's location, size, Staging, etc wnat to consult with a RO (radiation oncologist) and an MO (chemo guy) and definately want them to consult together before any Tx plan is agreed upon.

I Googled CCC's in Louisville and came up with the James Brown Cancer Center. It looks like they have everyone under one roof. Didn't dig deep enough to understand the total volume of patients. Just thought I would put that out there. Have a great Thanksgiving.

James Graham Brown Cancer Center at UofL.

A good CCC option to consider

They have a significant H&N cancer program and dedicated team with a case load of over 200 new patients a year.

Two cancer researchers from the team that developed the Gardsil HPV cancer vaccine are now at Brown and continuing their HPV cancer research there.

Thanks so much for the info! I will have to look into it! Why would my dr want to send me to Cincy if there is a cancer center here?

While it may seem an unnecessary hassle, I would go to Cincy as well. What kind of insurance do you have? I had Blue Cross PPO so was able to choose my own doctors.

In my case, I had all of the tests done at Stanford and then hand delivered copies of all of the tests to UCSF. In addition, I got an appointment with a surgeon at UCSF and had my case reviewed by both tumor boards before deciding on a final course of treatment. It is worth noting that I did this in an expedited manner so as not to impact the start date for treatment. My Radiation Oncologist at Stanford told me that it is important to start radiation ASAP. I listened to her and as soon as I recovered from surgery I started. I was diagnosed 2/22/08. Had the primary tumor removed by a surgeon on 3/5/08 and started radiation 3/27/08. Interestingly, the two tumor boards recommended different courses of treatment (UCSF did not think it necessary to do the Cisplatin).I ended up having the treatment done at Stanford but was reassured by having my case reviewed by the two tumor boards.

Have a great Thanksgiving! You will get through this!

Shaylynn,

By expedited manner, I mean I was very persistent with the schedulers. I called and often times showed up to get in the calendar if they didn't call back. I was always nice and would sometimes bring cookies, flowers, etc. but it was very clear that I was going to get a slot in the calendars, whether it be for an appointment with the Radiation Oncologist, the Oncologist or the Surgeon or to get a time slot in one of the multiple tests that are necessary.

I also had someone help me. There may be people who want to help you. This is a specific job where someone who is persistent and will not take no for an answer might be able to help you. The need to be overly pushy will pass once you have decided on a facility, a course of treatment, and have started the treatment.

Others may have comments that might differ from mine. I can only share my experience. It was good for me to be able to focus on "the next thing to do."

Shaylynn,

Everyone is providing great advice. I too had you same scenario. Ulcer on the tongue - wouldn't go away dentist sent me to and oral surgeon........

You can and will make it through this. There will be some tough times, but it is nothing you can't do. Just set your mind on the prize of being cancer free!

I am just a little over a year out from treatment and for the most part am doing everything I did before. My mouth is still dry, but I just drink lots of water. I can eat most things, but still can't chew everything like I used to. But I can taste pretty well and the best thing is that I am here.

I will keep you in my thoughts and prayers.

Cindy

Shaylynn,

It never hurts to be "the squeaky wheel". It's your life and believe me you only want to be treated for this cancer once and correctly. There are many different ways to skin this cat and some go overboard in my opinion so that's why we are encouraging you to get multiple QUALIFIED opinions.

I felt the same way when I was diagnosed. I also had an "ulcer" that would not go away. I dealt with that for about a year then went to an oral surgeon. He did the biopsy and it came back as dysplasia. He sent to a surgial oncologist. I cried all that day. It was in March of 2007.My first surgery was cancer and since then I have had 3 surgeries and I still have some pain. Although the last 3 were not cancer. I agree with what the others are saying. EAT!!!! After any surgery it can be very painful. They say it's one of the worst surgeries to have. I have had four so I'm a pro. Buy Ensure and mac and cheese. And stool softner!!! When you take the pain meds you can't go and that may have been the worst part.

I am getting married this March so I know it's hard to deal with something so wonderful and something to terrible at the same time. I hope you find support here. I just joined myself.

I also think it's important to eat what you like. Even if your taste is not effected, the pain after surgery can be so bad that you just drink Ensure. I like the strawberry!! Brushing your teeth can be bad too. But....it usually lasts about 2 weeks then you can begin eating a bit more normally. That was my experience.