Hi Dave, thanks for sharing your story and it sounds like you had a brilliant attitude to fight this horrible desease.

I have had a mouth ulcer for a few months and got concerned about it and went to see my doctor who referred me to hospital for biopsy. Today I got to know that it is a tongue scc (Squamous cell carcinoma) or tongue cancer in other words.

I am going through other screen tests at the moment and will have to go my way through all the treatment to survive.

It is 8 months since your last post. I wonder how you are doing now?

Cheers

Max

Hi there max... if 1987 is your birth year you are terribly young! There are a few of you here unfortunately. I'll answer for dave as he's been invisible for a bit, but he's doing well as far as I know. New girlfriend, back in school, and working to help make people aware of oral cancer..

Hopefully they move quickly with you. And throw the book at you first time out. It's the best way to get rid of the cancer for good. Best of luck and introduce yourself to the rest of the group there is a lot of valuable experience her. take care.

Max I have put your post along with Cheryl's reply over on its own thread. This way you will get your own responses. Let me know if you need help navigating the forum.

Welcome to OCF! Yes you are young to be going thru this! It will work to your advantage too as you should be stronger and heal faster than someone older. Im very sorry you are going thru this!!!! My son is just a little younger than you are so it hits home seeing someone in his age group diagnosed.

We will help get you thru this with info and support. OCF is made up of many knowledgeable survivors and caregivers who know things the doctors dont. We have lived it and know all the ins and out of all kinds of things and will help pass this along to you.

At this time focus on eating everything you can. Eat all your favorites and dont worry about gaining weight. When you go thru treatments your sense of taste will change and swallowing may be difficult so eat now.

Best wishes!!!

Hello Cheryld and ChristineB,

Thanks for your quick responses and moving my post to this new thread.

Yes I am quite young (25) to find out that I have this horrible desease but I am ready to fight it all the way.

I live in UK and am doing a PhD in Engineering at the University of Cambridge.

I don't smoke and drink only socially. I am not aware of any cancers in my family and don't know where I got it from. In or around July, I noticed I had a tongue ulcer that was very painful at the beginning and I felt some discomfort in my mouth for a while, then the ulcer pain and mouth discomfort disappeared but the ulcer was still there. I surfed the web to find out what it could be and potentially it seemed to be an early stage of mouth cancer given all these symptoms.

I went to my General Practinioner who sent me to hospital for a biopsy which turned out to be a tumour. They say it is an early stage and it's good that it has been caught early. The doctor examined my neck and said it was 'absolutely fine'.

Possibly I have not realised all seriousness of this yet as I try not to think of it too much for now and rely on my knowledge that it's an early stage and it curable. However it's freaking me out that I will have to lose probably part of my tongue and there are all other post-treatment issues...

I have done CT today and will have MRIS tomorrow.

I haven't told my parents yet as they live in a different country and I don't want to make them worry before I finish all screen tests and know the date of surgery.

I will take Christine's advice and will eat anything what I like before the treatment starts.

Thank you all,

Max

Max, you will need help to get thru this so please dont delay too much with discussing this with your parents. I know if it were my son I would want to know and help him.

Anyone who offers their assistance to you, write down their name and number and tell them when the time comes you will let them know what they can do to help you.

Seek out a second opinion at a top notch cancer center. This is very important! You want to go to the biggest facility that has the best reputation for treating oral cancers. I think there is a link on the main pages for world wide cancer centers. I will try to find it for you.

I know a student who is over at Oxford for the next 3 months. her mother was a much loved member of OCF but sadly she passed away after her 3rd round of oral cancer. What country are you originally from?

Here is a link for world wide hospitals, not sure if these are specialized cancer centers or not. But maybe it will be helpful.
Worldwide Hospitals

Max,

I totally understand. I too was just diagnosed and my family is far away, and I can sympathize. I waited myself to tell them, knowing they would worry, especially since they can't see me to know I am carrying on business as usual. I waited until everything was confirmed before I told them, but news like this spreads fast, and the last thing you want is for them to hear about it from a well meaning friend passing on their support.

My parents were upset that I hadn't told them earlier, so it's a bit of a catch 22. I would tell them sooner rather than later, as they will want to support you. They will always worry (especially with you so far away) regardless of whether you are sick or healthy.

Best wishes to you, and if you need to talk, I'm a few steps ahead of you (I've had all my scans and my surgery is about 4 weeks away), but in the same boat.

Tina

Max - hopefully they will move quickly and agressively with you. Good luck on the MRIs - etc... And take care.

Hi Christine, I will definitely tell my parents soon before this news spreads. I haven't told anyone yet apart from you guys on this site who have this experience but will inform my friends and relatives... I was diagnosed with it only yesterday and want to do a bit of research about it before telling my relatives.

I am a Lithuanian citizen but have lived in UK for many years and am a permanent resident here, so will probably look for treatment in this country. However, I can opt for another country if they can provide better treatment and the cost is ok. I think it is the key question now where to undertake this treatment. I would like to keep as much of my tongue as possible.

It seems there are modern techniques in Israel to treat tongue cancer. Has anyone heard or has any experience with focused ulstrasound, thermocoagulation, laser surgery, gamma knife? Or are these techniques conventional that can be expected to be used in any surgery? Also, it seems there are clinics that can replace the tongue after surgery. Has anyone had any experience of getting a new tongue/part of tongue? I can't even imagine though how much it will cost if it would be a private clinic...

Tina, where are you going to have your surgery? In Canada?

Cheryl, I hope so too... It all is so horrible...

Thanks

Max

Exactly where on your tongue is the tumor (side or lateral, base, front)? Replacing part of the tongue is called a flap. Many members here have gone thru this. Yes, a new tongue can be made but it doesnt entirely replace what is taken away. Thats something you will learn, surgeons always want to operate while radiation docs want to give radiation. Once tissue is removed it cant be put back on, only a part from another area can be transplanted there which wont work exactly the same.

This site is the very best available for info about oral cancer. It has up to date factual medical info and is certified to be correct. Many times websites are not checked and wrong info is very common when it comes to medical issues. There are many pages on the main OCF site. Just click on where it says Oral Cancer Foundation in blue up towards to top left. There you will find tons of info about treatment protocols which will help you decide what options will be successful while maintaining as much of your tongue as possible. You will want to hit this hard the first time so hopefully you dont ever need to go thru this again. There are also many places which have false claims of cures which are bogus and are only money making businesses which pretend to care for patients while robbing them blind. Please be cautious when selecting 'new treatment types'. The only thing that really works is surgery to remove the tumor and radiation with or without chemo. Chemo alone wont eliminate the cancer.

So much to think about right now. Please stick around and we will help get you thru this. Right now just keep eating everything in sight

Hi Christine, my tumour is on the left side. You can probably see it if I stick my tongue out all the way or if I wanted to show the left side of my tongue to someone then it will be visible in my mouth.

I appreciate that nothing will replace my original tongue but I will learn more about it. Let's see first what docs will tell me and how big is the tumour. It looks like give or take 1.5-2 cm. But it's only how it looks like, i don't know how deep it is.

Thanks for telling me about 'new treatment types'. They do advertise some different types of treatment but I don't know anything about them. All I can see is that national health system (NHS) says that tongue cancer can be treated with surgery + radiotherapy. And I think it's better to rely on people who have such experience, so I am glad that I have found this website given my problem.

My next appontment is in one week on 3 Oct. It seems I have done all tests (CT, MRIs, X-Ray and something else probably that I am unable to recall or maybe not). So I suppose they will suggest me next time what treatment I will require or possibly there will be more tests?

I went to Marks and Spencer today to buy some nice and tasty food and was almost crying that I can start counting my days

You may be given a PET scan. If so, make sure the day before to avoid sugars and carbs, to rest and drink plenty of water (minimum 48 oz). This will ensure a more accurate reading.

Hi there - I had a similar size tumor - similar location - my dr. One of the best in his field. Removed 40 lymphnodes from my neck, and 1/3 of my tongue - then he and a plastics guy took the skin, and a blood vessel from my arm and built me part of a new tongue. Then he sent me for rads and chemo, this is standard treatment for this type of cancer. Good luck!

Max,

Yes, my treatment is in Canada. I live in Edmonton, Alberta. My family is in Winnipeg, which is a 13 hour drive in good weather.

My tumour is left side too, same deal, stick out the tongue and you can see it, although mine is 3.5-4 cm. It's normal coloured (not black or white or some other weird colours I found during my research), and it kind of looks like what your lip looks likes if you bit it.

My tests were a parade of various doctors, blood work, biopsy and a PET and CT scan, along with what feels like a hundred scopes up the nose and down the throat. The only one that hurt was the biopsy, and that was just for a couple of minutes.

I was supposed to find out today my surgery date, but no call, so still waiting.

Be careful what sites you go to for research (the ones that end in .org are generally the better ones). I made the mistake of general google searches and scared the crap out of myself unnecessarily. When you do tell your family, warn them about that too. My dad did the same search and got very upset.

Remarkably, life has not changed much - I get up, go to work, meet up with friends, do laundry, etc. I'm flying to Toronto tomorrow to go see the Blues Jays play the Yankees.

This is a bump in the road, and I have found that humour is a pretty good coping mechanism for me. I'm a lawyer and I tell people that all my collegues let out a collective sigh of relief that finally something is going to shut me up for a while, LOL. That, and it's like having a new wardrobe, because I can fit into clothes that I had put away into the "someday when I don't like ice cream anymore" closet. Of course, now I eat the ice cream, guilt free, and get to wear the clothes!

I know it's hard Max, and it seems unfair, but remember that this is a fixable problem, and everyone here, and everyone who cares about you will be rooting for you!

Max, we've come to the right place for accurate, up-to-date information and support from those who have traveled this road already and those of us who are just getting started on this journey.

Tina, I admire your attitude. Humour works well for us, too, although some of it remains between my husband and me - a lot of people don't appreciate our warped sense of what's funny :-).

We learned the first time around how surprisingly quickly the bizarre becomes ordinary and day to day life moves onward.

I'm hoping to get my surgery date when I meet with my surgeon Friday.

We're all rooting for each other.

Yep, Karen, I have noticed that people can be taken aback at the jokes - I have gotten some odd looks and had to clarify that it's a joke...ah well it's worth it to combat what I call "cancer face" (the head cocked to one side followed by the softly spoken "how are you?"), lol.

Fingers crossed for you and I to get our dates by the end of the week!

Cheryld, sounds very scary 1/3 tongue gone, 40 lymph nodes gone. Very sad.
How is your speech and taste? Can you taste foods now and can you pronounce all sounds?

Tina, it is very good that you remain to be a person with the same habits as nothing has happened. I think the best attitude is even start feeling better than before:) and feel like nothing has happened.)

I told my parents today. They wanted to come to me and to support me. I said i was fine. My mom told me 'don't worry, it will go away'. How likely is that my tumour will disappear before the next appointment?:) I think nothing is impossible.
Anyway, I think I need a good rest before the next appointment as they are going to talk with me about the treatment.

Mausmish, in general I am very grateful to the creators of this website. I believe it is a very good job for the benefit of all these people who had to sign up.

So glad you have talked with your parents! I bet you feel alot better after sharing this news with them.

Boy how I wish cancer would just disappear!!! You have a long road ahead of you, its not always easy but you can get thru this and move on. Your age will greatly help make this so much easier for you.

Keep up that positive thinking, it really does help. At least I think it makes you feel a little better when you look on the bright side of things.

Hi Max,

I am a young'n too diagnosed at 24! I had over half my tongue removed, plus reconstruction, radiation and chemo (finished in January), and I am doing great now . My tumor was about 4cm with nerve invasion, so you will probably be better off than me. I am able to eat just about everything other than spicy foods, and do the same things I did prior to treatment. Good luck, feel free to send me a message if you need someone to talk to!

Thanks Christine, it is definitely good that I talked to my parents. They want to come to me now and to support me)

Emily, Thanks for your post which is kind of relief for me. I will be fine too. I will message you again

Hi there - speech is about 85%-95 % still working on some letters - but for the most part I'm good - somedays it's perfect depending on how swollen I am. Also I tend to I tnd to have a small lisp at night when I'm tired. Taste is mostly back except for most sweets which isn't a bad thing -

The surgery was nothing - I still have a numb neck area but other than that I'm great - and very blessed.

Good luck! You'll be okay

Hey Max, got my surgery date - October 11, so I will be sure to keep you posted on how things went when they spring me (they say 10 days - 2 weeks in hospital).

My family is arriving later this week, I'll let you know how that goes too, lol.

Hi Tina, you've got 10 days to go! My appt is on Wed so will probably get to know some more info about myself too. Keep posted how things go and good luck!

Right back at ya Max.

Hi guys. Just shocked to see younger people like me with this disease. I was 29 when diagnosed!

Tina and Max, I just went through all this stuff last december (2011) and here I am. My life is completely normal now.

Oh yes, I have some difficult with some words in my language (portuguese) but in english my speech is pretty normal. I can�t say "vidro" in portuguese, but i can sat "drowning" on english.

So, I�m available to talk about it. I had 2 surgeries (partial glossectomy + neck dissection) and I can talk about it if you want!

If you want send me a personal message and we can chat on facebook, ok?

Good luck with your appointment tomorrow, Max!

Hello, I had my appointment today and my surgery date is 15 October.
There will be two surgeries: 1) tongue and 2) neck dissection.

Following my scan last week (x-ray, CT, MRI) they said they were good enough and the desease hasn't spread.

Apparently they could see some glands were swollen (if I recall correctly) and they think they might need to be removed as well.

They said tongue operation would take about 30 min and neck dissection would take about 3 hours. So they estimate it will be around 4 hours in total. They think my discharge date will be on Thursday, so I will have to stay in hospital for less than one week.

I requested a second opinion, so there was a radio therapist on my appointment. They both think that I should go for surgery and they think no radiotherapy will be required. They said I could oct for radiotherapy only but they reccomend having an operation.

In addition, I had an appointment with a person who discussed with me my speech prospects. She think I will not have any major problems with my speech. She said that usually people in this kind of situation would have a problem with the sound "s" and possibly sound "l". (I think someone mentioned the problem with the sound "s" before). In general she said I would be fine and it might be that people who know me well enough would notice some speach change but new people who I get to know may not notice anything at all.

I asked whether I will have any problem with tasting the food. They said I wouldn't.

So in summary they will remove part of my tongue + some lymph nodes and will have to open my neck to see the glands. They anticipate that I will need no radio and no chemo at this stage.

I asked what stage of my cancer is. They said they think it is T1N0M0.

I have done ECG and blood tests today. I suppose it's pre-surgery assessment.

Any comments are more than welcome.

Thanks

Max

Max, glade to here things are moving along for you. I too had tongue surgery last year and for the most part speech was fine after a week or so. The down side is a year later the entire left side of my mouth is still numb so no eating on that side and there is still a metallic taste in mouth most days. But considering what was done, not to bad. Also had neck dissection August 2012 to remove a tumor and 35 nodes. The recovery was not to bad but be prepared for neck, jaw and ear pain afterwards. An ice pack will become your new BFF. Hope all goes well for you!

Good luck... T1NOMO can change very fast particularly if you have an aggressive cancer - they can tell you this after the final biopsy on the removed tissue comes back. I was T2NOMO at dx and by the time I went in for surgery I had one lymph node involved (we're talking 7 weeks) and mine was a well differentiated (slow growing) cancer. Therefore. Post op keep a close eye on your mouth, and neck and if something doesn't heal within a certain amount of time, make your ENT aware of it. And if they feel chemo and rads is not necessary keep a super close eye on your nodes, neck and mouth. take care.

Max,

You came to the right place for info. I can give you some info but we are all different.

I think my tumor is like yours, on the left side and no nodes involved.

I can't see where they took the tumor out. My tongue doesn't look any different. Where I had the ND you can't see the scar they cut in the crease.

I have trouble with my "s" and if I talk too fast my words run together. If I talk too much I start to slur my words and my tongue hurts.

As far as food if I eat chocolate my tongue feels like it's doubled. I asked my surgeon when I went for my CT Scan 2 weeks ago why? He told me they cut into some nerves some food will not taste the same. With me it's mostly milk products.

I was in the hospital for 2 days I wanted out. I was on liquid Roxycodene for 2 weeks and if need then on to tylenol over the counter.

Scar tissue might bother you afterwards if it does (neck) massage it. I have scar tissue in my tongue a small lump. When I felt the lump with my teeth I called my surgeon immediately scared me. I went in to see him he took a look felt it and told me scar tissue. Since then I've had 2 CT Scans, only scar tissue.

That's all the info I can share with you. You'll be fine, before you know it it will be over. I was scared too just like you your imagination runs wild.

Take care keep us posted.
Connie

What nodes are they taking when no nodes are indicated cancerous in your Stageing?

Where on your tongue is your Primary?

Have they tested your slides for HPV?

Wow, everybody is different. Chocolate stuff and milk products are even more delicious to me now. And my tongue is in different shape, defnately!

Hi Max, I know it's discouraging to have all this info thrown at you, but all in all it sounds like reasonably good news.

Keeping you in my thoughts.

Max,

Sending lots of healing thoughts your way in this stressful time. It sounds like you're holding up well. Like Tina, I think the news sounds reasonably good. I'm so sorry you're going through this, so unfair, especially at such a youthful age. You've got a great attitude. What's the impact on your school work? That's a heavy load all in itself - hope you aren't stressing over that as well. You can catch up with that when you're healed.

Hi, Max:

Sorry you have to be on here but this is a good place to be. I had a partial glossectomy and neck dissection done in June 2010. You seem to be handling things very well, and this forum will only help. I didn't join the forum until earlier this year; and I wish I was on here when I got my diagnosis because I was pretty freaked out over the whole thing and felt so alone and helpless. I had 25% of my tongue removed; and remarkably, most of it grew back in the first couple of months. There is still a bit of a divot, and eating from that side is not quite the same. But otherwise, speech is good. Eating anything other than soft foods was not possible the first week or so after the surgery, but now I can eat anything. I'm not the expert on all things medical, but I can give you an experiential point of view when you need that. Best of luck to you!

Tim

Now that I think about it, I have to agree.....dairy products do seem to taste better. I always had a sweet tooth, so luckily that wasn't affected negatively! Soda/caffeine products don't taste as good, and I wasn't drinking much of them prior, anyway. My wife and I do enjoy a glass of wine now and then, and it definitely tastes even better now.

I am surprised they aren't doing any chemo or IMRT. I was looking at the other posters on this particular post and all of them that have not had recurrence had chemo or IMRT at least. The one who did not had a recurrence a year later. Just an observation.
Thoughts on this from anyone else? I would think they would hit it hard the first time because of the aggressive character of this disease.
Kathy

They might re-evaluate their treatment plan after surgery. I know for me, they originally told me no chemo and maybe not radiation, but after surgery they changed their minds because of the lymph node involvement and the fact that the tumor was poorly differentiated and deeper than they originally thought. It's hard for doctors to tell exactly what they are dealing with until they get in there.

Kathy:

I've wondered the same thing. I thought I was getting off "easy" just having surgery and no other treatments the first time; but in retrospect, I wonder if I would have had the recurrence had it been attacked more aggressively the first time. However, I don't want to sound like I'm doubting my surgical oncologist, everyone told me he's the best in the San Antonio area.

Thanks everyone for all your comments and support! Much appreciated.

I am getting a bit confused now. They haven't done a test for HPV yet. They said they might do it at the point of surgery.

People say that if HPV is positive then I would need radio and chemo before surgery? Is it correct? How come they haven't done this HPV for me in advance?

Hi thanks for your message. It seems from your signature that you had no chemo and no rad and you have had no recurrence since then? Is it correct?

I am not sure what nodes they want to take out. Can they say that there are cancerous nodes from CT or MRIs scans?

The tumour is on a left side tongue

if the tumor was on your oral tongue (and not base of tongue), it is most likely HPV negative. They didn't test my tumor for HPV status until surgery - the doctor said before surgery he was pretty positive it was HPV negative, but did the test to give us our peice of mind.

Thanks Tina! I am keeping you in my thoughts too and will pray for you on 11th!

Thanks! I am sending you my healing thoughts too! I know you have two upcoming surgeries!

yeah, i think the tumour is on oral tongue (not base). It is on a left side and I can see it well enough when I open my mouth... I hope then that it's HPV- too...

How come did I get it then? I don't smoke and don't drink!

The cancer slides have to be tested for the presence of the virus and it's hardly ever found on the oral tongue so I doubt that it will test positive for HPV. There are many who are diagnosed with SCC who were never smokers and do not test positive for the virus. Their cause is unknown at this time.

There are quite a few of us here who aren't smokers or drinkers, and some quite young - for me it was chronic irritation to that area of my tongue. I would be very surprised if comes back HPV positive.. For this cancer, surgery, then rads and chemo is the best treatment. Be agressive from the start. Hugs and good luck.

Hello people,

I just have a question.

Sometimes, my tongue cancerous ulcer is sore, sometimes it is not.

I wonder if anyone else's ulcers change (used to change) in terms of pain?

Cancer can be painful. Sometimes it comes and goes. Hope you can get some pain meds to make it easier.

My operation is coming up and feeling a bit anxious. My parents are coming tonight so they will be around to support me in my time of need.
I hope to have a great day with them on Sunday before we go to hospital on Monday...

Hello Max,

Wishing you happy times with your parents tomorrow. I will be thinking and praying for you on Monday.

Ina

Prayer Before Surgery:
"Loving God, I entrust Max to your care this day; guide with wisdom and skill the minds and hands of the medical people who will perform Max's surgery. Grant that every cause of illness be removed, I pray that Max may be restored to soundness of health and learn to live in more perfect harmony with you and with those around him. Amen.

thank you so much for your support, Ina

Had my surgery yesterday (tongue and neck dissection). Woke up in the recovery and felt a bit scared lol as remembered they told me i would have two surgeries at the ssame time (tongue and neck) and for some reason thought they have done only tongue and that now there would do the neck) probably i thought so as i didnt feel any pain. They put a lot of local anaerstesia in the areas so there was no pain and i felt very comfortable.

I havent seen my tongue yet as still cant open my mouth propertly and a bit scared to see my new tongue but can feel something is missing:(

They said i kept very well during surgery and appear recovering well. I haven't used my morphin doses which were attached to my hand for self-service but was given some paracetamol instead. So a lot of local anaestesia was a good thing i believe while it was healing.

My parents told me yesterday my speech was the same as before surgery but today feeling more difficult to speak and swallow as feeling a bit sore and uncomfortable.

So glad to hear you pulled up ok Max.

The swelling is always the worst around the 3rd day post surgery so don't get too worried if the swelling is getting in the way of speech - it will get better.

My wife had a similar surgery around a month ago now and she has recovered very well.

Like you, she was young, fit and had no risk factors whatsoever. The up side of this is that recovery tends to be much quicker for those without risk factors & are young so I am sure you'll bounce right back up again in no time!

I'm so glad you did well. I know it's a daunting surgery but it's not terribly painful if you didn't have the added pleasure (sarcasm) of a graft it's even less so. The neck dissection is weird as you really have no pain with it... They cut the nerves usually so it's mostly numbness which is semi permanent - the nerves do regenerate but generally take a long time and probably won't ever fully recover.. Mine is numb and tingley almost 21 months out. If you can - you should do physio as soon as its okay'd by your dr. The dissection effects the shoulder and muscle - therefore your arm, and of course in your neck so your range of motion will be shot to regain these things to almost a hundred percent - you should do mild physio. Congrats on getting through it - hugs!

Hi Max! Thanks for posting your update. The worst time of a surgery is the first few days after the procedure. In a few more days you will feel much better as the swelling begins to go down. Being young you should bounce back so much faster than an older person.

Best wishes with your speedy recovery!!!

Hi max

You got through the surgery and I would say take it slowly. It took me a few weeks to feel comfortable and quite a while before I inspected it. Eat plenty and rest. Are you having chemo or rads or like me both?
I had my treatment in London although I'm in essex.
Keep well and help and advice is always here. I had so much support the guys are brilliant here xxxxxx

Thanks all for the comments!
I wonder what diet should i maintain to make my tongue heal better? Should i eat more proteins like meats to make it heal quicker?

Jane whereabouts in london did you have your treatment?

I dont know yet what my post-surgery treatment would be (if any). They have said anything yet. What should i anticipate? Rad and chemo?

I am going through treatment in cambridge, addebrooke's.

They sayd it was a very early stage cancer. The doc said the tumour was about 15mm. When we discussed the surgery procedure the doc said he would remove the tumour + around 10mm of sorrounging tissue. I havent seen my hole yet.

In the morning before the surgery he said he would try to remove as many lymph nodes from the neck as possible to make sure nothing spreads.

They never mentioned anything about radio.

The docs will do rounds on the ward tomorrow morning. What questions should i ask?

Thanks

Max

I recall they said i could have gone through radio as alternative method of treatment but they would not suggest it to me because of my age. And said surgery should be ebough.

Am i safe?

We are not doctors, but why would you want to take a chance of ANYTHING getting away? You may as well go for it all the first time around as to have to do it again later. I would get a second opinion...but...
just my thoughts.
Kathy

My lymph nodes are being processed in the laboratory. They will tell me in two weeks how they look like

Max, so glad to hear all went well. I had a trach in for 6 days while in hospital, and am just graduating from fluid to pur�es. My tongue feels like a giant cotton ball an of course only half s actual tongue so swallows difficult. But hey, the hardest part is over!

Take care, and I hope you have friends who can help after your folks leave

Hi there.. Food and healing? Well I'm a vegetarian so suggesting meat is not something I'll ever do, but protein is best for healing so my advice is to boost proteins and to do so without having to consume meat - which at this point may be a little difficult anyway - is to pick up a high quality protein shake and make a smoothie once or twice a day, add fresh fruit, flax, maybe some quinoa, and milk of your choice (I make almond at home so I use that ) but you can use regular, flax, hemp, almond, rice, soy, or kamut milks - all are high in protein. Don't add extra sugar - complex carbs are best for healing - that's fruit etc.. And stick to semi solid foods - I found mashed foods more difficult to eat and control than say - a soft omelet, or soft veggies, or pasta, Mac and cheese (for me it was vegan) . The drs were right - rads first for this type of cancer is usually reserved for super large tumors that would really effect quality of life, or cause major debilitation etc..(even then when I comes to saving a life and better survival rate they'll still suggest the surgery etc) The first line of defense with oral cancer of the tongue, (oral tongue not base of tongue) gums, cheek, mandible, palate, is usually surgery as it tends to be a more agressive cancer than HPV+ cancers of the base if tongue, and tonsil. Hoping your nodes all come out negative. but do watch carefully if they don't offer you rads or chemo, this is a mistake they often make in thinking your clear go home, they've got it all - only to find later its back. rads is no guarantee but it does cut the chance of recurrence in half.

That said keep your mouth as clean as possible rinsing etc...after very meal, this too will promote healing, and be gentle! Hugs!

Cheryl, thanks for your recommendations! sounds like what i am eating. I squezze lots of fresh juices + make milk shakes based on ice cream.. it's yummy but contains a lot of sugars. In general ice cream is a well consumable product for me lol.. cold and soft.. i eat a lot of blended vegs - similar to soups.

i had my neck clips removed today. The doc said it is healing beatifully. BUT! Most of my left cheek and the area around the scar are numb. The doc said it could take quite a long period of time to heal (she mentioned it could be as long as 6 months) or she said it could even stay permanent. The surgeon who operated me said the surgery went well and the nerve wasn't damaged. I believe the numbness will go away after some time. But does anyone have any idea how long it may take?

I am very concerned about my post-surgery treatment. I am going to the the docs and all the team on 31st on my follow-up appointment. I need to prepare a list of questions.. would be very grateful if you could help me to ask the right questions.. There are a few questions that I have in mind.

1) how many lymph nodes have been removed. Were there any cancerous cells?

2) any risk of recurrence?

oh dear... i don't know what to ask them.. how can i make them not to make a mistake if they don't offer me any rado or chemo??

If there is indication of cancer in any of your nodes then you may be offered rads and chemo, chances are you didn't have perineural involvement because your scc wasn't that large or deep, and unless you come back positive for lymph node involvement with possible leakage outside the node (ECE) then you will likely not have to have rads if that's the case - good - just keep an eye out for anything unusual in your neck, or mouth. Poorly differentiated Scc may also push them to offer you treatment. Hoping your all clear! I'm 18 mos out of treatment. Almost 21 out of surgery I still have a numb neck. Though I now feel my ear and cheek. It takes time and you may never regain it all but you will get better! hugs

Hello All,

I had my appointment today.

Luckily my lymph nodes were clear.

The doc has suggested another small surgery in a few weeks - excision of top layer from the tongue scar where operation took place. They say it is similar to biopsy where they want to take a bit more tissue from the 'safety margin' and to check whether all bad cells are gone. As I understand it's more extensive than normal biopsy as it will be under general anaesthesia.

I wonder whether anyone else (especially those who haven't proceeded to radiotherapy) had similar simple surgery after the main one?

I would be keen to hear any other thoughts what people think about my treatment.

Regards

Max

I have been trying to think of a possible cause of my scc diagnosis.

I recall that the first symptoms were in July (severe tongue pain, difficulty to swallow, discomfort in mouth, there was no ulcer at that stage). Then all the aboeve symptoms disappeared and the ulcer appeared.

I smoked weed in June/July probably 3-4 times a week. They say that they put this weed into different chemicals to make it 'more effective'. You buy it from a geezer round the corner and you never know what it's made of. Can this weed contain any reactive elements that could possibly develop oral cancer?

I dont smoke it regularly but smoked it only for a short period of time (4 weeks or so) but I believe this is when my first symptoms started to occur.

This is something you may never find out. There are many who have no known cause.

It has not at this time been scientifically proven that using weed has caused oral cancer. The smoking part irritates sensitive mouth tissue but as far as I know there has not been any studies linking it to OC.

What has your doctor said about the cause of your cancer?

Christine is right smoking weed may not have been the cause but it's very possible the chemicals added may have caused irritation or cell change since you can't know the chemical breakdown. You never know try not to focus on that now - the past is the past - focus on healing and staying well.

The doctors don't know what is the cause of my diagnosed scc.
They say the leading causes are smoking and misuse of alcohol and usually it occurs in older people than me. They couldn't explain where I got it from.

But yes, I would never know why I got it.. I feel it might have been weed.. the weed itself shouldn't be harmful. This is the chemicals that they might have put there. This is illegal stuff and obviously the quality hasn't been approved by anyone.

Anyway better not to think about it. Perhaps the golden rule is to be careful with what we put in our mouths...

Totally max.... You said it right....:) I know we were taking about youth getting this cancer. Just heard from a caregiver online who's son - 13!!!!!!!!!!!!!! Has been diagnosed with laryngeal cancer... What the heck....?

That's just weird... if 13 y.o. boy has been diagnosed......





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