Hi Everyone. My name is Wendy. Im 46 years old. I dont smoke or drink and have good dental hygiene....and I have tongue cancer. Specifically, Squamous Cell Carcinoma.

It never occurred to me that I would have Cancer, so when I noticed what looked like a bite/split in my tongue in October 2016....I thought it was just that. So , it was a little sore , not bad really. Nothing that Anbesol or Orajel couldn't fix. Except, it didn't go away. I thought, maybe my back teeth were irritating it....so I bought a Night guard. It helped somewhat..so I waited. Several weeks later, still not healed..except this time...there seemed to be a raised ridge near the cut...and it was very tender. More orajel and anbesol.

I began to WebMD and Google it up. All the posts suggests going to the dentists, getting an oral cancer screening. By now it was after the New Year....and I began to really worry. I told my family of my fears and the pain. I was having trouble eating and the area was more painful. They suggested I go to the doctor. My main concern..NO insurance, no money. So, I fretted about it. Googled every thing I could think of...until finally, one night I broke down crying. My parents and brother were so disturbed by my outburst...I literally was shutting down. They just didnt know how to handle me.

The very next day, I looked into insurance. Specifically, Cancer insurance. Just in case. My parents and brother, thought I was over reacting, but let me do it anyway, as I was becoming frantic with worry and not sleeping. So, i signed up for Lump sum cancer policies. The only draw back...there is a 30 day waiting period before it comes into effect. So....I waited.

Well...30 days came and went. During that time, I went through several bottles of anbesol and tubes of orajel. When I made sure that I met the time requirement on my policies..It was now Mid-March . I went looking for a Dentist to do the Oral Cancer Screening. I have never been sick..and i should have had a family doc, but ...what can I say..hind sight is 20/20. I went to 6 different dentists and no one would see me....one dentist office receptionist actually laughed at me when i suggested that I needed to see the Dentist for the Oral Cancer Screening, which by the way was on their website as one of their services, she laughed and said .."what did you do ...google it?!". Needless to say, I did not stay . After no luck finding a dentist...my dad recommended his ENT. I called but could not get to see him, but another ENT would see me. I jumped at the appointment.

April 4 2017---I saw the ENT. He took a quick peek at it, after poking it with a tongue depressor, which made me tear up, he prescribed a dental paste for ulcers and told me to come back in 3 weeks. $260 for the appointment $80 for a teeny tiny tube of paste and I was out of the office in 17 minutes. The ointment was painful...it felt like it was ripping skin off my sore tongue everytime. Said find a dentist to file your teeth down...or get some dental wax to cover my back teeth.

April 19 2017---Aspen Dental called and said they had a cancellation and could I come in the next 20 minutes. I hopped in the car and was there. I explained my situation. They were so kind..first time visit...no charge for exam or xrays...but the hygienist said we should do the Oral Cancer Screening--$70---15 minutes later----dentist comes in..no I do not need to have my teeth filed...they were fine....but the test was positive with the Visalite Scope, and I should get a biopsy asap.

April 21 2017--painful punch biopsy....sprayed some benzocaine in my mouth....gave me a numbing shot....told me to pull out my tongue and hold it...and WHAM! SNIP! Done. I can tell you right now....I am a wimp. I nearly passed out..yep. I cried. It bled for a total of 5 seconds. But hurt like....well someone had just cut a piece of your tongue off.

April 25 2017----today....he took a brief ..i mean brief 2 second peek at the lesion. Then sits down and tells me --- ,"You have Cancer. Its going to be a long road ahead of you". It was, truly what I had feared. He was brief and to the point. Frankly, I heard only snippets, thank the Lord, for bringing a family member, because i heard....Ct scan, neck dissection, tumor removal, lymph nodes, radiation, and sick. That is all I can remember. He escorted me to the lady who makes appointments. I begin Thursday, 2 days from now.

What am I gonna do?.......

I was diagnosed March 2. Starting my 4th week of treatments and it's a long haul. Educate your self! Think about a PEG tube for nutrition. Glad I did! This is a great forum for info. Christine will be by with great info. Any questions please ask me...I wish you well!

Welcome to the forum although I'm sorry you have to join our circle of friends and that you had to get through such a stressful time getting diagnosed.

Cougardad is right. Learn all that you can about the treatments so that you are prepared. You can go to the OCF main site. There are all kinds of good, vetted information on it. Dr. Google, I'm afraid, does not always give reliable information.

Whatever your treatment is going to be, I would suggest you spend the time now eating all your favorite food as it may be a while before you can enjoy them once treatments starts. It sounds like you have a very supportive family and that's a wonderful thing. They may also want to check out this forum and the OCF site so that they are comfortable with the help they are providing you.

I will leave it to ChristineB to tell you about nutrition and hydration. These are extremely important, so make sure you read her posts.

Please keep us posted.

Hi Wendy,
I was diagnosed 3/7. You can do this. The people here are wonderful and will share their knowledge and experience with you.

Mine was discovered in a lymph node and has an unknown primary. I have trans oral robotic surgery planned on 5/9 at Stanford.

ChristineB will tell you more but if you aren't already at one, I suggest a comprehensive cancer program available in big cities or teaching hospitals. There will be a multi disciplinary approach.

CougarDad2 and Gmcraft have great advice.

Please reach out for support. You may want to ask to record your visits on your phone so you can listen and review later.

Wishing you the best,
Stef

Welcome Wendy! You are in the very best place for info and support. We will help you get thru everything you are facing. Stick with us and you will do just fine.

Sorry Ive been tied up today but I will be back and write more soon. Til then... read and educate yourself about OC. On the main OCF site there is TONS of info that will help you learn correct medical info.

For now, heres a few links that can help....


List of CCCs

OCF main site --- DIAGNOSIS

OCF main site --- TREATMENT

OCF main pages... Financial Assistance

Wendy Im the one everybody told you would check in and reply to your post. Im sorry I didnt have enough time earlier to write very much but now Im back with lots of info. Im not sure what you mean by your begin in 2 days. Please dont tell me thats your first day of rads or you are having surgery that quickly?

Im sure your cancer diagnosis came as quite a shock. Even though it sounds like you had a bit of a run around it actually happened pretty quickly. With your diagnosis, hearing the dreaded... "you have cancer" phrase forces us to face our own mortality. Thats not easy to process! Just remember the fear of the unknown tends to create alot of "what if.." thinking which can quickly snowball into lots of negative thinking. Dont let yourself fall into negative or "what if..." thinking. If you must ponder the "what if..." try to limit it to only a few minutes then physically get up and "change the channel". Walk away from wherever you had been and go do something positive that will keep your mind engaged. Staying busy helps the time go by quicker. Try to avoid Dr Google too, it can bring up some very frightening images and stories.

There are so many appointments until you have a concrete treatment plan. If you havent scheduled a second opinion I would strongly recommend getting one. If you are able to find a Comprehensive Cancer Center (CCC), that would be an excellent choice for a 2nd opinion and a treatment facility. They use a team based approach so all the experts are on the same page and work together to create your treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started to eliminate the cancer. Remember your physician and medical team work for you so choosing the right team and facility are crucial. Find the best medical care you can and go with it.

Anyone who offers their assistance when they find out about your illness, tell them when the time comes you will let them know what they can do to help. Write down their name and contact info so if you (or someone helping you) needs a hand they can reach out to the people on your list. Theres a million small things that can be done by helpers. All the small things can add up to being overwhelmed when you are sick and cant do everything you used to. If you have radiation you may need someone to help you get back and forth to the treatment facility. When feeling bad and taking strong pain meds driving a car may not be possible so its smart to line up a couple drivers now. You can also call the American Cancer Society 24/7 ask about their volunteer driver program. Ive been a volunteer driver for other cancer patients.

Read thru the posts here and also read and absorb the main OCF site. Theres tons of important info in both places. By learning about your illness, you will become a strong advocate for yourself. Many patients find they are not always given all the info they want so by learning about OC, it helps you to ask the right questions when necessary.

You will also want to schedule a dentist appointment to get a good check up and you may want to get flouride trays started if you will be having rads. I think I remember reading you already went to the dentist. You should have a complete check up and any teeth that arent in the best shape should be removed before doing rads. You'll need to get a complete blood work up done including thyroid levels (men need to also have their testosterone levels checked). Its easy to take care of this now before treatments, but its impossible going backwards to get your baseline numbers after you have started treatments.

This is something I nag everyone about, their intake. This is one of the most important things you can do, especially if you are going to have rads. So start now eating all your favorite foods, desserts too. You dont want to go into this having any cravings. No matter what kind of treatment you are having, it will likely affect your ability to eat, taste and swallow for at least for a couple days. With radiation treatments, your ability to eat can be affected for weeks or months. Its only temporary but when dealing with all kinds of other things this can easily become a very big deal. Patients who will undergo radiation treatments will need to take in at the very least 2500 calories and 48-64 oz of water. This is the bare minimum!!! Patients who focus on their intake and push to hit 3000 or even 3500 calories every single day usually will get thru rads so much easier than patients who skimp and dont make their daily minimums.

I hope this info helps and isnt too overwhelming. I know how scary being diagnosed can be. The things Ive written are important and will all help you to make this as easy as possible. Stick with us and stop by often, we are here to help you get thru whatever your future holds. We have been thru this ourselves so we have experienced it first hand. We're one very large extended family here and we welcome you as if you are a long lost relative. Feel free to ask questions if there is anything you dont understand.

Good luck!!!


PS... I always send a private message (PM) to new members. In the PM theres a link, please review it to help make learning to navigate the forum and adding or editing your signature easier. Click on the tiny flashing envelope next to your My Stuff tab located near the middle top part of any forum page.

I am sorry to hear about your diagnosis. My husband is one week post treatment. You can do it but it is a rough ride. We are still in a really bumpy part of the ride. I cannot stress enough to you the importance of making sure you meet the nutrition and hydration levels suggested here. Also, you are going to be sick and need help. That's just reality. Let people help you. Also, you may read different things about a PEG tube. I can only speak for our situation and say that I do not know how he would have made it through without one. His team did not refuse to treat unless he had one, as some do, but they did say that it could delay the treatment plan if he decided to have one placed later and that 90% of their patients used one and the other 10% wished for one. We did not regret it even though it has been infected twice. Where to get treatment is a very personal decision but we have been so happy we chose a comprehensive cancer center.

Thank you, sooner. Im scared, but Im trying to be not to be. My family is very supportive, but there is only so many...."don't worries" and "everything is going to be just fine" 's that you can handle. I have been reading on the forums, and have decided to get the PEG if it is an option. I would much rather go through it all at the same time, than to regret it and suffer through another procedure. I hope your husband is doing ok. I wish you and your family all the best. I am so thankful to have found this forum. Im going nuts with worry, but being able to learn from others has been a blessing for me. Thank you so much.

Thank you, ChristineB, all the information you have provided has been much appreciated. Im a little worried....i got the reults ofnthe Pathologist on Tuesday, and my ENT scheduled the CT for tomorrow morning 7:45, with a STAT, written at the bottom....and then scheduled surgery for Wednesday, May 3rd. It all happened so quickly , i do not know if I have time for a second opinion, he didnt say anything to indicate that it was imperative. Is this unusual to have it done so quickly? He did say that he wo7ld be handling the surgery and I may choose to have the neck dissection vs. rads, but it might wind up being both.

Thanks, cougardad62, gmcraft, and Stef H,. Im so glad to have found his forum. I dont think Ive slept much, since discovering it last night...haha. I know a lot of people say this, but I sincerely thank you all. There is so much to learn about this , that Im a bit overwhelmed at the moment, but im so grateful for the opportunity to learn from everyone's experiences.