It's been rather hectic since I was diagnosed.
First I was told it was probably just my tongue, easy peasy, surgery and I'd be good.
Then I had a PET scan and something lit up in my neck. So then I had a CT (CAT?) scan and apparently there are 3 abnormal lymph nodes on the left side of my neck. So the ENT told me treatment would likely be a double approach, either surgery and radiation or chemo and radiation. I've been added to the tumor board at the local hospital but they don't meet for another week.
I decided it was time for a second opinion. Or two. I've got two appointments tomorrow in Boston, one at Tufts with a head and neck specialist and one at Mass General.
But when I talked to the ENT today, he said something about using all three types of treatment because this 'can be' aggressive in young women.

I feel like this is a conspiracy. That's probably just denial but, really? From surgery and it being in the 'early stage' to possibly needing all three and going to see this doctor and this doctor and this doctor and this other doctor and this dentist also and this doctor.

Why is the approach to dealing with cancer so fear mongering? I'm not trying to devalue what people have fought through but it just seems insane to me that instead of curing a disease, long debilitating and costly treatment is the go to answer.

I started getting really mad last night trying to fall asleep convincing myself that I don't know if they're telling me the truth or not. (That truly does seem quite silly when I write it down...) When the doctor says that you have cancer, it seems innate to follow his instructions and do as he says but I need to understand more about this. I need legitimate sources of information about diagnosis and treatment.

Has anyone felt this way? Am I just in denial or is there a possibility that cancer is big business for the medical industry and blind acceptance is the patients only role? How do I fight for my right to seek alternative treatments? What are alternative treatments? Why are they alternative!?

I'm quite thankful for this board. Thank you to everyone for your guidance and support through all of this.

Get a second opinion at Tufts but make sure the The Dr. is an ENT Oncologist and ask questions also take someone with you to listen and ask questions. I take it you must be from New England, I was treated at Dartmouth. Then listen to their recommendations and attack this with everything they offer, most alternative treatments don't work as well as the normal protocals. Listen, ask questions and ask away here others will help. Keep a positive attitude and good luck. Semper-Fi Bob

I'm sure your doctors have your best interest in mind! There are general guidelines set forth by the NCCN, which most follow, but then it can differ somewhat based on the hospital, the doctors training, and experience, including all the possible combinations with the three modalities, so you can see three different doctors, and get three different opinions. The key is the tumor board, who will have to come to some agreement on the best type of treatments suggested for your particular case.

Surgery is usually the preferred treatment with oral cancer, and recent studies show better outcome also with a neck dissection. Radiation & chemo can be added to get any stray cancer cells, including systemically with chemo, which chemo is also added to sensitize radiation to work better. I believe the key to survival are the nodes, and experienced centers, with high volume in HNC, have better outcome, and more experience with IMRT, which can differ in less experienced centers.

As far as alternative treatments, I'm not one to recommend any, besides medically acceptable, proven complimentary therapies to support recovery that are also approved by your doctors. I do advocate eating fairly healthy, doing some type of exercise when feeling up to it, maintaining healthy weight, avoiding infections.

I hope this helps, and good luck.

I know that this is overwhelming for you right now and downright scary. Definitely scary. Please believe that oral squamous cell carcinoma is aggressive. This is no walk in the park to treat. Having metastasised to lymph nodes makes this a Stage 4 cancer. This needs aggressive treatment.
Definitely get an opinion from a CCC that uses a Tumour Board approach. They will be looking for the best treatment and outcome for you. At this stage of the game, using alternative therapies is not an option by itself. The only curative options are surgery, radiotherapy and chemotherapy and/or a combination of these. Being a stage 4 you do need to hit this hard. This is your life you are talking about. You don't want to be facing a recurrence months after treatment has ended because you chose a softly softly approach to treating this. I'm not meaning to scare you, I just want to impress apron you that this is a serious disease. Hit it hard the first time.
Thinking of you,
Tammy

Hi,

Sorry you are here but it seems like you have oral cancer, so rather than be clouded about the diagnosis and any grand scheme to make doctors rich, focus on getting those second opinions and sitting at tumor board.

You will be spinning more than now so work hard to try to grab onto the important themes. Since time is so short you won't be able to get educated enough but try to read through the website here and it will help.

Treating this with surgery, chemo, surgery, or any combination is pretty normal.

Good luck,
don

ALK, my heart goes out to you. I think you are suffering from a lack of information. You need the big picture and your doctors haven't given it to you yet. We feel powerless in the face of their expertise and sometimes they forget to explain everything to us properly.
The information people on this forum can give you is invaluable. Lots of us have been where you are. I certainly have and it wasn't until AFTER my first big surgery that I became properly informed. Learning about the gold standard treatments for oral cancer that might have spread to the nodes will help you accept the process: surgery to remove the visible cancer, radiation to kill stray cells and often chemo to help the radiation work. It's a tried and true method that has saved untold lives. Sometimes people have (chemo)radiation only but it all depends on the location and nature of the tumour.
We are here to help you get through this. Best wishes.

Amanda, I'm so very sorry you're dealing with this. I'm sure it feels like you've been hit by a train-total broadside.

I was a care-giver for my mom, and I can only speak on my mom's experiences. She went from a negative biopsy by an ENT (for what ever reason, it was a false negative) of a horrible, painful, fast-growing ulcer on her tongue in September/October of 2014, to a "Stage T2" according to a second biopsy by an oral surgeon and a CT scan in early December, to thinking they'd gotten clear margins in early January 2015 after a hemiglossectomy and neck dissection, to being diagnosed with a very aggressive form of tongue cancer with spread to and out of a node and nerve invasion without clear margins by mid-January 2015 after the pathology report from her surgery came back. So she went from no cancer to early cancer to advanced cancer with removal and reconstruction of half her tongue and chemo and radiation in the span of about 4 months. The kind of cancer cells she had, along with the extension to and out of the nodes, made her disease more unpredictable than many.

What we all learned the hard way is that although we're dealing with science, diagnosis and treatment are not exact science. Even PET scans have to be interpreted and viewed along with biopsies and other information.

I do think there is an ugly side to cancer care, and health care in general, especially when you consider the high costs of cutting edge drugs and health insurance. But we knew the doctors my mom saw were almost as heartbroken as we were that her treatments didn't stop her disease.

I guess what I'm trying to say is that I understand feeling like the answer changes on you out of nowhere, but I'm so glad you're getting a other opinions even with the doubts you're experiencing. My hope for you is that you get a plan that you can believe in that includes the traditional gold standard treatments with doctors you feel a connection with. And if you want to investigate ways to supplement your treatment plan with some alternative approaches that help keep you strong, hydrated, nourished, and with pain under control, while you complete your treatments, that can only help.

I'm wishing you strength, sleep, and some peace of mind. I'll be thinking about you as you navigate things.

Im sorry you are struggling with this. You must feel like the weight of the world is on your shoulders.

Im concerned about your post asking about alternative treatments. Sadly, OC patients do not have options for a cure with anything alternative. The only ways to eliminate this type of cancer is either surgery, radiation with or without chemo or a combo of surgery, rads (and maybe adding chemo). By itself chemo is not curative. Beware of anyone doctor or facility that claims there is a secret, easier, less invasive option to curing OC. Any members who have attempted to go the alternative route are no longer with us.

Best wishes with everything you are facing.

I agree - go by your doctors and use their insights - they know best and base if tongue is a very hard disease

I truly feel for ya. And know the feelings of fear and denial. I was just recently diagnosis with OC. It sucks on so many levels to try and comprehend whats going on. Read and Read about the options and what your Drs are telling you. This is an amazing site for information. The people here are amazing with a wealth of information and just plan being here for you. we are all in this together.

ALK,

There are many people here who are wondering how your recent doctors appointments went. If you are up to it, please let us know how you are doing. Once you become a member of our family we always remember you and care how you are. Even if you don't feel like sharing details, please check in. You are not alone.

I feel exactly what you do. It's a bit hard sometimes to trust the docs. Are they just in this for money? Ever notice that both of the only AMA approved cancer treatments CAUSE cancer?? Anyway, that being said, I am on my 3rd of 30 radiation treatments for salivary gland cancer and I have done a TON of research on head and neck cancers. I do believe that the only thing to do if we want to live, is to follow the doc's advice and as much as it sucks, follow their recommendations to the letter. I don't trust the system and I am not even sure if I trust my team of professionals totally yet, but I do know that I need to go through with this treatment, despite hating it. I wish you the best and a smooth treatment!!

Discovering you have cancer is like a roller coaster. There is so much information to understand and decisions to make. Who do you like, how comfortable are you with them, do they have the experience to take care of you properly. My roller coaster was two very different recommendations. One Dr. wanted to remove half my tongue and give me a tracheotomy and the cancer board at another hospital said, I need 6 weeks of accelerated radiation only. Of course I took the radiation path it was basically 6 Drs over 1 surgeon's opinion. Now that radiation completed tis past Friday the 19th of February, I still have the fear of not knowing if the one Dr. was correct. I won't know for at least a month. This is just scary stuff, I hope you are on the road to a good decision with people you trust.

Thank you all for your replies. I was certainly quite angry about the whole situation. It's no one's fault that they were able to make a better diagnosis based on more accurate information. It was just incredibly frustrating going through that process of figuring out just how bad it really is.

I had surgery about a month ago. They removed the tumor on my tongue with clean margins and 3 of 20 lymph nodes were cancerous. I just had a port and feeding tube put in yesterday (Has anyone else had this? Is that a normal thing? The tube is painful...) and I'll be starting chemo-radiation on the 23rd. I'm soo ready to get started and get it over with!

I am also apprehensive about putting my body through all of that because there are no guarantees and there's always a chance that it doesn't get rid of it completely. However, I understand that it's better to hit it hard the first go around and if it does come back, well, that's for another day.

Thank you all for your encouragement and support!

It's good to hear that I'm not the only suspicious one! I suppose it's just the fear of blindly following instructions about something that I don't understand. And the fact that I've never had any medical problems in my past and now I'm in the thick of it.
I hope your treatment is going well with little side effects!

Wishing you a quick recovery and some peace!

Thank you! It's certainly been a roller coaster. I'm feeling pretty great now, recovering from surgery but will start chemo-radiation in about two weeks. I'm hoping for the best and trying to stay positive and keep my mind distracted but also trying to gain as much information as possible.

I had both a port and feeding tube. Yes, those things can be painful at first then just uncomfortable the next couple days. After about the first week they kinda settle and its just a bit strangle having them there. Try to think of them as both a temporary tool to help you to get thru this. Unfortunately its alot to absorb and not enough follow up instruction with the tube. If you need help with it I can give you all kinds of tips.

Chemo and rads for many patients isnt easy. The hardest thing is to keep your intake high enough. If you can start now getting used to taking in at least 2500 calories and 48-64 oz of water daily then you will be ahead of the game when you start. Your doc can also write an open prescription for you to get extra hydration in the chemo lab. It will instantly perk you right up when you know you are not meeting your daily water goals. Some patients will make it a habit to go a few times a week. I know the calories sound excessive and as a young person you may be hesitant to gain weight. If you are slim, gaining a few pounds going into this would be a good idea. Your body is going thru incredible changes right now and burning up calories much faster than normal trying to fight off the cancer and rebuild itself. This is why its so important to keep your intake at least 2500 calories daily, more is even better and will make the next few weeks/months much easier to get past. This will need to continue until at the very least you hit the first year after finishing rads. Also, even with a feeding tube its very important to keep swallowing water every single day even if your throat is sore.

We are here to lean on and we will help get you thru everything.

Best wishes with everything!!!

Hi moona11! I see you recently went through surgery? How are you feeling? Any words of wisdom for me? I am scheduled for surgery 4/14/16. I'm super nervous but I'm hoping this will save me! I hope you are recovering well! I would love to be in touch!

ALK, I'm glad to hear your surgery went well and I hope your radiation and recovery afterwards go well! Your optimism is inspiring since I am scheduled for surgery in about 1.5 weeks. I'm super nervous but I am confident in my medical team. Please keep me updated on your prohress. We can journey through this together!