Hi guys, i am new to this and very scared. I found a painful spot on my tongue and was confirmed to be the C. Can you help me understand how deep i am in trouble? Tonight i found a dot size beside the original spot, does that mean it is spreading to every where in my mouth. Any info helps

Babak41...going to notify the moderators to move this to the correct forum so people will see it and respond.

What is the diagnosis you were given?

Were will you be treated?

What Tx are they suggesting?

Welcome to OCF! (Thanks Deb!)

Right now its important to stay calm educate yourself so you can be your own advocate and get the best possible care. I suggest reading as much as you can both here and on the main OCF pages. Learn about oral cancer and everything that goes along with it.

You are just beginning on the long road when first diagnosed. Its best to go to a comprehensive cancer center (CCC). They will use a team based approach where all the specialists work together on your individual case and are on the same page. At the very least get a second opinion as surgeons always recommend surgery and radiation docs always say you need rads, etc.

Please take some time to review the info I sent you thru a private message (PM). Its important to easily learn how to navigate the forum and add a signature. Its something we need in order to help you easier.

About the added spots on your tongue, it could be anything besides cancer. Maybe thrush or even an infection. We are not medical professionals, but even medical professionals would never be able to diagnose anyone over the internet. Try to stay busy and think positive. We will help you get thru the upcoming months and prepare you for your battle. Its up to you to make good choices and focus on what is in your control (your intake and attitude). Im a firm believer that a positive attitude helps patients get thru their struggles easier.

What you can start on is paying attention to your intake. Eat all your favorites and try to bulk up a little. Pay attention to calories and how much water you take in. Every single day for at least the next year you will need a minimum of 2500+ calories and 48 oz of water (some will say more). This is not optional! You cant skimp one day and try to make it up the next, that next day never happens and it becomes a habit leading to malnutrition and hospitalization if you dont change your intake. This is the keep to getting thru everything easier and it is up to you and within your control.

Hang in there, you really will be ok and get thru this. We are in your corner

Welcome. Sorry you had to join this group with a recent diagnosis of cancer. If you can tell us a litter more about your diagnosis others may be able to help you, and if you have any questions, just ask. Good luck.

Hello, Babak41.

I'm sorry that you've recently had a diagnosis of tongue cancer. Hopefully, it was caught early. If you had symptoms and sought help within the first 2 weeks, that may be an indication that you caught it early, which is the best thing you could have done.

I know your world has been turned upside down right now. As Christine said, please create a signature so we can help you a lot more.

I hope the ball has begun to roll and you've been referred to a Comprehensive Cancer Center and plans are being set in motion for you. I look forward to hearing from you and you can do this!

Take care and best wishes!

Kerri

Welcome, and very sorry to hear about the diagnosis. You have come to the best place for this type of thing on the internet.

If you give us a bit more info, as previous posters have stated, we might be able to give you some more answers. For example, what type of cancer, is it confirmed to be SCC? HPV positive or negative?

Hi Babak:
Well, you've come to the right place for answers. And you've just become a member of a new family because that's what this group is, and a very supportive one at that.

I'm sure you are scared, we all were too when first given the news that a demon had entered our lives. But, you took the right first step by seeking out this group. There is a ton of important information "within these walls", and it will be shared with you by all.

When you're down or scared, that's the time to speak up, even if it's in the middle of the night; I've been on the forum many a night at 2am trying to help someone get past a bad night or letting someone else help me get past mine.

We've all been where you are right now, and come out the other end. Our job is to get you past the fear of the unknown. None of us were born knowing what cancer is all about, we have to learn about it at the worst possible time; you have a lot of friends here willing to help.

So, get yourself a signature created by going to My Stuff and Edit Preferences and start typing. Read some signatures of other people to see what to include.

Welcome to the family, you now have a lot of really nice relatives.

take care
Tony

Thanks everyone for the replies, i did not expect so many responses. I am going to have the scan results on monday. I guess that will clear a lot the confusion i feel right now. I am self employec so not being able to work for a long period is my nightmare after the sickness itself. Looks like this site is the best way of communication with other patients.
Thanks again every one and if you can write a little please help me by writing about radiation therapy as I will start that very soon.

Hi Babak:
Well I can see you are up at 2:30 am just like me. My sleep schedule was weird before I got cancer, now it's just plain bizarre, no telling when I'm going to be up.

I wish your cancer diagnosis was the same as mine because I could then describe my treatment plan and it would be similar to yours. But, mine is tonsilar cancer and I think that probably differs in treatment from tongue cancer. So, all I'll say is hang in there, others will chime in later with a more accurate opinion.

Now, try to go get some sleep ... and I will too.

Tony

Babak, I am also self employed, so I know the stress. I worked super hard after my diagnosis and before surgery to build up a reserve to get me through the off work time. That's something you may want to consider (plus work will help keep your mind off your health issues).

How long you'll be off work will depend on your treatment plan. I was lucky in that had no radiation, and was back to work 3 weeks after surgery, albeit at a reduced level.

Keep us posted.

Radiation SUCKS! But it's doable. In the nutshell... you may only feel tightness and discomfort in the beginning. Nothing major it depends on whether you've had surgery. I could feel the scar tissue tightening from the outset other than that I didn't really have any issues until week 4. Things got bad. That's about the time you get a funky metallic taste, and then shortly after that foods just taste awful, then blessedly you lose all taste. It becomes hard to eat and swallow. At this point you will need to have either a PEG tube to get feeds, or some serious stamina. (I went the stamina route and FORCED myself to drink boost and eat). Thankfully I had minimal pain until the last few days of treatment (this is rarely the case) your mouth will blister, and burn, if you are fair skinned you may also blister and burn on the outside. You should rinse with salt/baking soda/water - or FLATTENED Club soda - which you can actually swallow (the baking soda mixture you have to spit out)keep your mouth as clean as possible. You may need pain meds and you should have a good cream for your neck area. The worst time during radiation is when it ends. The first two weeks following are extremely unpleasant. You will feel tired, and sore and all around crappy. Then slowly you will start to climb out of that hole.

If you are also getting chemo you may be nauseated. You also have to look for different symptoms - tingling in the hands and feet, and hearing loss if you are on cisplatin.

Compared to chemo and surgery... RADS sucks... but it could save your life. SO stay strong. and hugs.

Hi, Babak
You will know better on Monday about what to expect, but I just want to mention that as being self-employed, you have the advantage of having some control over your hours when you are able to work. You may be able to work at least part time through most of your treatment, or you may have to look into going on SS disability for a bit. I am sure that you are a very independent person, but sometimes family and friends can be a great help. If you would want to help a buddy in your situation (maybe driving to/from surgery or chemo) there is no reason that they would not want to lend a hand for you.
Let us know your results on Monday and we can be more specific about what to expect.

One last thing - the holidays are coming. Do your best not to let them delay your treatment. I am sure that my husband's treatment was delayed by at least a month because of them; doesn't seem to have been a problem in his case, but speed is of the essence.
Maria

Hi everyone, i just had my operation, a good piece of my tongue is gone but nothing major as the tumor was not too big, i will not get any chimo nor radiation! I am just praying my doctors know as much as they are believed to know. I mean if they are right i am one of lucky cancer patient! And if not then i will really lose my trust in them. Also they have cut the left side of my kneck which i won't get into the terminology. Here is the question i ask myself now and appreciate your input:
Is it possible that this was just a nightmare, i am out of it now and soon i will forget about it? Or this is just the beginning and i will be stupid to even think that this may ever be over?
Thanks everyone

Hi Tina, thanks for your input, i noticed you didnt have to go through chimo and radiation which is my case too, is it still the same? Are u ok after the surgery so far? I would like to keep each other posted on our conditions
Thanks Babak

Hello Babak - I think it's been awhile since I posted on your thread, but you just asked a question that I think I can shed some light on.

Looking on this as a bad dream and whether or not it will ever be over is (in my humble opinion) doing what my good forum friend and mentor Bart told us we absolutely should NOT do. Doing so is what's called "attaching to outcomes" and it means you have an emotional stake in the answer. When we do that we put ourselves in the position of becoming bummed out and even depressed if the outcome isn't what we hoped for.

It's far better to just approach this as "I have no control over the outcome. If the outcome is positive ... great, if the outcome is negative, okay I'll face that bridge only if I actually come to it". Thinking this way keeps us from worrying both consciously and sub-consciously about what the future holds, both positive and negative. It allows us to go to sleep each night without burdin and to wake up the next morning with a fresh, positive outlook for the day.

I had several opportunities to worry thoughout my treatment. My worry time was usually just as I get into bed and turn out the light. Fortunately, for me, when I go to bed, I'm usually really tired and ready to go to sleep. So, it was easy to just say screw it, I will worry about this tomorrow (if at all). then when the new day comes, I wake up refreshed and say, no, not gonna worry about this today. I guess in one sense you're just kicking the worry can down the road, a little farther every day. That way you never have to actually worry about any of this.

Try this, it really will make your journey down this road a lot more pleasant, and with this battle we can use all the pleasant we can get.

best of luck

Tony

Hi Tina, it is me again, just interesting how similar our cases are. I had some part of my tongue removed(left side) and my knodes on the left were also removed, i did work super overtime before my surgery and this is giving me some financial relief now. I an hoping to go back to work even before one month. How are things with u now? I too do not need to go through chimo and rads for now, is it possible we are cured?

hi everybody
had my surgery. results were very good, no radiation or chemotherapy was needed. its been 14 months to be exact since my surgery. so far I feel good other than occasional paranoia of it coming back. I feel very lucky so far. I pray I will never have to deal with it again. to all those people leaving messages for me I say thank you and I wish you the best results as well.

Hi Tony, the last time you talked to me was about a year ago and I was very happy and thankful of your response. how are you doing yourself now. I am ok and I had my surgery and its been 14 months and counting since then without any issues. How did your treatment go?