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.

Wendy, boy am I glad you have joined our group!!!! I would definitely advise you to go for second opinion. Only this one doctor's eye and knowledge puts a limit on how you will be treated. From what you replied with I know you are NOT being treated at a CCC or your case would have first gone in front of a tumor board with all the experts weighing in on your treatment plan. Thats the reason for the rush. Ive seen this with other patients where they're rushed right into surgery before they have time to even process whats going on, they get told they dont need a second opinion. Do you have another appointment with this doctor coming up? A treatment plan should not be determined until all the tests are completed and reviewed. I have one simple question that will tell you everything you need to know about this doctor. Ask him if you should get a second opinion and if he thinks you should go to a CCC. If he says its not necessary then you know he is NOT looking out for your best interests. You can also ask if the doctor is affiliated with a CCC. Any reputable doctor will have no problem with their patient seeking a second opinion, they will encourage it to make sure their patient gets the very best medical care. I hope you were given copies of the biopsy results and any other office notes on file, they can be given to another doctor to review. Just remember.... surgeons cut and will always advise a patient to have surgery. Once its been removed, it can never be fully restored to exactly its original function and it can never be put back. Another thing... a neck dissection is NOT a replacement for radiation treatments. You may only have on shot at getting the cancer eliminated so you want to make certain you have the very best medical team you can get in your corner.

PLEASE review the links Ive sent you to help you find a second opinion location. Make those phone calls and get the ball rolling for an appointment. You will want to find an ENT who specializes in treating oral cancer patients and not the type of ENT who mainly puts tubes in kids ears. In those links I posted theres info describing the flow of things from when a patient is first diagnosed thru treatment and recovery. Theres even info about financial assistance to help cover costs if you would choose to travel to get treated.

When people first learn of your illness they will give you all sorts of advice they learned from their "Great Aunt Sally" who had xyz cancer in 1975 and got thru it just fine because they would rub cinnamon sticks on their feet. Yes, that was meant to be funny But seriously, the false cures will come out like crazy or you should do this or that all because they "heard" some third hand tidbit and it will help you. Friends and relatives will behave differently, some become your new BFF while others who had always been very close to you will run for the hills. Some people simply can not mentally handle someone they know and love being sick. Im telling you this so you are careful to just say "ok, thank you for the info" and not follow it and also take anything from "Dr Google" with a grain of salt. This kind of thing can be harmful or interfere with your treatments.

If you would like to talk about anything Ive posted, please feel free to give me a call. I talk to OC patients from all over the world on a regular basis. Over the years Ive been here Ive picked up quite alot of info and tips. I'll PM you my info so watch for the tiny flashing envelope next to your My Stuff tab.

Hi Wendy, You got this girl! I just went through all of this and just joined this group. I is a long road ahead but with positive attitude, wonderful support and confidence you can do it. I have a VERY similar story. I am 30 years old, non-smoker, minor social drinker, very healthy, no virus and I had partial glossectomy for stage IV tongue cancer. The process moves so fast but that is a good thing because you don't want it to spread and you don't want to have to stress and worry! I found out I had cancer March 10th and went through all the same test you are and had surgery March 20th. I saw you discussing a PEG tube. I had a NG tube the day after surgery and only for 9 days before passing my swallow study. This was a major shock to me and now 5 weeks post op I can even chew soft foods! I am 9% back to talking like my old self again. Everyone is different in recovery and this is your journey. I am so glad you have a supportive family and husband. I realized when you have cancer your whole family has cancer! Take one day at a time : )

Wendy,

Welcome to OCF and very sorry you had to be here.

I was diagnosed with oral cancer (SCC of my lateral tongue, stage 1) in 2005. I also did not have any risk factors and never even heard of oral cancer before. I went to the best ENT in our area, had CT scan and all the other tests, and had my first surgery (hemiglossectomy) within a few weeks of first learning I had oral cancer. After this surgery I was given the all clear - told they got all the cancer. What a relief!

A few months later, after I had time to do more research, I decided to go for a 2nd opinion and ended up at a larger hospital in a larger city. During this process, all my records were reviewed by the this other hospital and I learned that the pathologist at the small, local hospital "misread" one of my biopsy slides and in fact there was "cancer at the margins" in the one area.

I then ended up going to a another hospital (larger and only did cancer) for a 3rd opinion. My options included more surgery (tongue and/or lymph nodes), radiation or "watchful waiting" and combinations of these. I was sent for more tests (PET/CT scans, etc) and there wasn't any signs that the cancer remained. Over the next few months I visited multiple doctors to determine what should be done. Even the doctors that initially recommended more surgery, were now in the "watchful waiting" camp or radiation camp. I opted for radiation because I felt I had to do something.

Then in 2010 I found out that the cancer had returned to the same location and again went for multiple opinions. This time I ended up at Johns Hopkins (Baltimore, MD) - one of the best head and neck cancer hospitals in the USA if not the world. One hospilat wanted to do major surgery, but the doctor I saw at Hopkins did not agree. He recommended surgery initially, but at Hopkins and most larger hospitals that treat a lot of H&N cancer patients they do "frozen sections" during surgery - this is a term for a biopsy done during surgery to make sure that clean/wide margins are obtained. This was not done at the first two hospitals (small, local hospital) where I had surgery. The surgeon would continue to remove tissue in the area until clean margins were obtained. So when I went into this surgery I had no idea how much of my tongue would be removed. Fortunately it was minimal. One of the hospitals this time wanted to remove half my tongue, plus lymph nodes on both sides of my neck (a repeat PET scan did not indicate that the cancer had spread). Since I already had RT in 2006, this was not an option.

If I was able to have a "do-over", I wish I had gone to Hopkins at the beginning. Who treats you and where you are treated are extremely important. In spite of doing research and asking lots of questions back in 2005, I did not know any of this and I did not find out about the OCF website and forum until a year after I was initially diagnosed.

One of the things I love about the OCF forum, is that all the posts made over the years are saved and searchable. I would often do searches of prior posts to look for other patients that had a similar diagnosis as me. You can obtain a list of posts made by any OCF member by clicking on their username, or search posts in the various forums. You can read about my "OC adventures" from 2010 by searching posts that I made.

Wendy, I would recommend a 2nd opinion at a major cancer center (use the list Christine gave you to find one near you). Ask lots of questions and make sure they do frozen sections during your surgery. Oral cancer generally spreads first to the lymph nodes in your neck, so many doctors recommend a neck dissection to check the lymph nodes for cancer. A PET or CT scan is a good tool to see if the cancer has spread, but from my understanding you need a certain volume of cancer cells to be present before they will show on a scan. Wishing you the best!

Just wanted to add that both UCSF and the Mayo Clinic will do second opionions electronically - if you send them the files and course of treatment suggested by your team they will review with their tumor conference. Cost at UCSF is 800.00 and is not covered by insurance.

Review can take two weeks or longer so not for immediate decisions.

WHOA!!! To me (and many OC patients), $800 is a ton of money.

Thanks for the info Stef!!! This is great info to help many who are far from these places. Its a great option for patients who are in remote areas too. Two weeks actually is not bad at all for turn around time. It can take 4-6 weeks to get an appointment to be seen.

Wow, MrsZiggy. Ive been non stop telling my family how wonderful this group is. You all have given me so much support , both information and emotional. As each day passes, Im feeling more confident in my ability to overcome this. Im so happy for your progress. I know it has not been easy for you.

Susan2992,ChristineB, Stef H.....im currently trying to get a second opinion. I made copies of my ct scans from this morning and hope to have the Cancer Center OncoLogist take a look at my reports tomorrow. I am in a smaller city and unfortunately, do not have the resources to go far from home, as I am the caregiver for my parents as well. Thanks so much

So glad you're finding support here--we've been there so definitely lean on the group and feel free to contact me directly for support and my perspective.
You're in my thoughts, Wendy.
Esther

By the way, Wendy, I totally agree that you should get a second and even a third opinion. I went for 3 consultations and am so glad I did as each differed markedly in how they would perform reconstruction surgery. I ended up going with the third opinion and it was a very good decision.
Esther

Hi Wendy,

I'm so sorry to hear about your diagnosis. I can't even begin to understand what it must feel like. I'm very glad to you have good support around you.
I could be in the same boat as of tomorrow, I get the biopsy result from my tongue tomorrow after work, and I this week, this waiting period, has been the hardest and slowest week of my life. All the best with the surgery and best of luck with the result from. Please keep us updated.

Just giving a quick update. Not feeling too bad after the first surgery. First 3 days...i had the most terrible earache, if i tried to swallow. The saliva was super thick and gross...lol. Still couldnt get anything to go down but liquids...very liquidy. It was after the 5th day that things got better...no thick saliva, could swallow pudding...and managed to talk ok....little slurred but understandable. Stitches started coming out like crazy. It bothered me so, i went to see the ENT, he said that was normal, but ....he dropped the bombshell...Cancer was still present in the margins of the tumor that was removed and he felt that removing more would improve my chances , along with radiation. So, tomorrow is the next surgery...not healed from the first, but he said that is good. Will keep you updated on the ongoing journey. P.s. i really scared myself silly before the first surgery. I didnt feel a thing! Even after, the recovery , was not as bad as my mind was making it out to be. Your fear is your biggest hurdle. Stay strong, my friends.

That's the spirit, Wendy. Hoping for the very best outcome for you.

Wendy,
Will be keeping you in my thoughts and prayers that you have a very positive outcome and are soon on the road to recovery and back to your normal life. Keep fighting, you can do this!
Camille

Thanks so much gang! You have been so much help to me. Ive been terrified without answers. But reading through the forums has helped me deal with the stress.

Thanks for the update, Wendy! It sounds like you are doing very well with your recovery.

Your doctors are on the ball with doing the next surgery to try getting clean margins. You must be upset about this, I know I would be if I were in your situation. Hopefully there will be clean margins this time.

I know how lousy it is being stuck in the hospital. Please update when you are up to it.

Wishing you all the very best with everything.

Thank you for the update Wendy; I recently had surgery and have the same ear pain.

Regarding UCSF and second opinions - I only recently heard that they offer financial aid. Since I didn't hear that from UCSF directly will contact them for info. Might be useful in the future.

Next update, sorry dont know where to post this. Will be starting Rads in mid June, and getting everything setup for it beginning June 2nd. Dont know what or how I will take it, as it seems that stress from all this is causing some kind of funky fatigue. I have absolutely no energy, yet I cant sleep. Even taking something for sleep doesnt help, which is why this is being typed out at 1:12 am. Cancer team seems nice and well prepared for me, which is good...as my ENT, is a former miltary doc, and has the bedside manner of a table lamp. Anyway, i will keep you posted. Thanks again for all your help, I dont know what I would have done without this forum.

My family, is very supportive and very over the top.."you are going to be fine, you got this!, Piece of cake!, Wont be so bad, what are you so worried about " attitude, that it is beginning to drive me nuts. Ive heard , how are you, are you ok, ...like a couple of dozen times a day, from family and strangers. I know everyone means well, but im still wrapping my head around the whole Cancer thing. It has been 1 month as of today. Biopsy, diagnosis, 2 surgeries, pain, no eating, no sleep, constipation, nausea, loss of appetite,crazy freaking saliva, with a myriad of doctor visits and schedules, poking and prodding, im losing my mind. WHEW!!!! Well, enough venting for me, lol. Sorry to put all this out there, but for the life of me, I cant seem to say this out loud to the family, I dont want them to feel bad or unappreciated...and it seems like everyone here has been through it all and so much more, that it makes me feel bad to even attempt a comparison. Thanks for letting me ramble. Good luck everyone! G'night.

May I offer you some advice?

Couple of things........You are the one going through this. I've learned that most people, even close family, only want to hear positive responses. I know they mean well with their questions, but if you're honest with them about how you actually feel they'll probably stop asking. (They ask and offer supportive statements to reassure themselves just as much as they are concerned about you.)

The ENT with the table lamp manner. So What? All you need is for him to do his job and do it to the best of his abilities. Some doctors have a great combination of surgical and social skills, others not so much. Seems like you have the former.

Create some mental / emotional space for yourself. Stop answering the phone and / or responding to texts or emails. Take some time to get yourself in the right mood mentally and emotionally. Try to get some quality sleep.

Unfortunately, oral cancer is a bitch of a diagnosis and it takes a lot of time, effort, and strength to become cancer free.

Good Luck

I know exactly what you are going thru can be draining mentally. People genuinely mean well and do not fully understand what hearing "you have cancer" means to a patient. They do want to help (but dont usually know what to do) and encourage you so those annoying phrases are repeated over and over. People you know when they find out about your cancer diagnosis change. Some of those who you have always been closest to may run for the hills leaving you scratching your head not understanding the abandonment. Others you barely know will step up and be your new BFF and champion. Much of this is due to people not being able to face your mortality or even worse they project this onto themselves and are quickly overwhelmed with negative and scary "what ifs".

Your mind must be spinning being you were only first diagnosed one month ago. Thats like lightening speed to go thru discovery, diagnosis, 2 surgeries and into recovery. You need time to process all that you have been thru and all you are facing. In time you will learn to accept the situation and put your energies into fighting the enemy... cancer.

Always remember, we are here for you. Its ok to ramble, vent, cry, yell or anything else you need to do. We have been thru it so we completely understand all too well what you are going thru. Hang in there, we got your back