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View Full Version : Can you help! Base of the tongue cancer help.



Bigboy4u
09-21-2009, 02:44 PM
I went to see the Doctor today after having my MRI Scan he sat me down and said unfortunately, I have a mass at the base of my Tongue, and its not looking good, then he went right down my throat and took a biopsy, not good at all and he said, with his 25 years its look lick a carcinoma of the base of the tongue and that means taking out your tongue and or Chemo all radiation together.

He also said seeing how fast the mass on my lymph node has grown he thinks the mass will grow fast as well.

So when next do you think they can stop to cancer growing with just chemo and Radiation or is it just dreaming if I have 18 months to live all very horrendous I can tell you?

the doctor says it more than likely is
Squamous Cell Cancer of the base of tongue.

It is about 1/4 to 1/3 of the base of my tongue with my lymph Gland swelling and massing to about 2" across now.

He said if I do not want my tongue and voice box cut out I would have to rely on only Chemo and Radiation treatment.

A doctor on another forum said the treatment below would give me a good chance of living longer has any one heard of it being tried and tested.

{link deleted by admin. http://cancerforums.net/viewtopic.php?t=12696 as amended http://cancerforums.net/viewtopic.php?t=7121 }

Does anyone know if rely on Chemo and radiation with a large cancer like this would give me more of a chance to live a reasonable quality of life.

Thanks for your help as you can imagine I am now beside myself with worry and have no one to turn to.


Any one out there who can help me with advise I have no one else

rmaureen
09-23-2009, 01:27 PM
Hi Bigboy4u,

I am sorry to hear this news, my heart goes out to you. I do not know how to answer the questions you have posed. I looked up information on Google about this type of cancer; but I could not find specific answers. Hopefully someone who has information, or have dealt with this type of cancer will come along and post. Meanwhile, you might check this link out at http://www.livestrong.com/groups/group/base-of-tongue-cancer-survivors/ and post some of your questions there. It has a forum for people facing the type of cancer you have been diagnosed with. ( FYI--members of Cancer Forums must make at least 10 posts before they can post links. ) I just want you to know we care about your plight, and I will be praying for you. I hope you find the answers soon.

Bigboy4u
09-23-2009, 03:30 PM
Thank you for the link to all those positive survivors with base of the tongue cancer no mention if they had a swollen lymph node though.

I do not know if it's gone too far if the lymph node is swollen as mine is and it seems you have to be near a Hospital in the USA to get this first class treatment and a good insurance policy so I will have to see how thing move after I get5 the answer of my biopsy he did say they might have to take more as he thinks its deeper then he was able to extract keep the positive lings coming its good to hear.

bigboy4u

Ladyspurs
10-12-2009, 12:33 AM
Thank you for the link to all those positive survivors with base of the tongue cancer no mention if they had a swollen lymph node though.

I do not know if it's gone too far if the lymph node is swollen as mine is and it seems you have to be near a Hospital in the USA to get this first class treatment and a good insurance policy so I will have to see how thing move after I get5 the answer of my biopsy he did say they might have to take more as he thinks its deeper then he was able to extract keep the positive lings coming its good to hear.

bigboy4u

Hi there,

I am new to the forum and happen to see your post, I have had this very type of cancer, I had it in 2003, I had surgery to remove the mass, then 6 weeks radiotherapy and chemo. I have my final visit to the hospital ever on Christmas eve (my consultant said that there is no need for me to visit anymore after this). I still have my tongue and there is no sign of the cancer.

He also said that my positive, never give up attitude was a massive help.

I am not living a normal life and am once again enjoying good food (a bit too much to be honest). If you need to talk or want any further info, please feel free to get in touch.

I am in the UK and went to QMC and City Hospitals in Nottingham.

regards

Annette

Oh and yes my lymph node was swollen the size of half a hard boiled egg.


Hope this helps

Bigboy4u
10-12-2009, 03:50 AM
Hi my swollen Lymph Node is now the size of a hardboiled egg, grown large in a few weeks, I am due to start treatment in a week or so and my neck swelling is now very obvious.

I am trying to put on 10 lbs a week as I'm told I might lose 30 lbs by the time the 7 week treatment is over, I'm trying to find how to arrange to get Carnation 560 Instant Health drinks, as I will need 6 a day, I have to pay for everything nothing free here, but I do have the chance of having the best Hospital in Asia where many westerners who could afford to be treated anywhere in the world prefer to come here.

I also need to find where I can buy the fake spit Biotene products, even Baking Soda, I can't find, so many things to find, problem is the post here, is well known for not getting to you, if anything is worth money is included, so it is black listed, as a country for certain post.

On top of all this, I have to somehow continue to work, as a teacher here, no work no stay then I have no idea what to do, its a job I just love and as I was made bankrupt in my late 50s and could not find work, he UK, a friend was working Teaching in Thailand I came here, got a job and I live the life of paradise herewith the most stunning home and good quality of life and lots of respect and just love it.

Hi rmaureen yes I have seen this web site and others but the best one is still oralcancersupport dot org./forums. as they are so fast in answering and have so many wonderful tips and survival stories there fortunately unless your very weak when you start the treatment I can see this cancer is now very curable as a matter of fact my radiologist said he is not looking to just make my lymph node go down he is looking to cure me.

Thanks for your input wonderful Infor

kind regards Bigboy4u

willybang
11-01-2009, 05:46 AM
I hope things are going well for you Bigboy.

I am following right behind you on your journey...

I have just been diagnosed with stage four oropharyngeal Cancer.
Like you I have a mass at the base of the tongue which is inoperable
as my tongue would have to come out causing even more problems.
It has also travelled to Lymph nodes on both sides of my neck.

I start a seven week daily course of Radiotherapy on 23rd Nov
alongside an all day Chemo session one day a week.

My Doctor has told me it is going to be a very unpleasant period,
but if he had any doubts that the Cancer could be put into remission
he would not put me through the discomfort, So that is encouraging!

He said it is treatable, but an uncomfortable Journey and he feels
my positive attitude will be a big help on the road ahead.

Its not all doom and gloom, buckle up and ride ride beast!
Thats my attitude anyway!

Hope all is going well!
Mark

Bigboy4u
11-01-2009, 06:09 AM
Hi

How wonderful, my problem is the lymph node is growing fast 6 cm in 10 weeks so they start on 5th november to jump of the cliff with the Bungee and hope i pop up clear in a few months time after going to hell and back with the poison they will give me

I have had my Pet scan yesterday and then conference planning 5th to start after that and a week in hospital for Chemo it would be great if you can give us the low down on your treatment blow by blow if you need to have a PEG port or you can eat and swallow I have to teach through this or my life will be turned upside down.

Let me know how things are with you, that will be great may be we can compare note all the time.

willybang
11-01-2009, 06:26 AM
Yes it will be a help I am sure for us to compare notes..
Doctor has advised I will almost certainly need a PEG port
during the last two weeks as my mouth and throat will be
too badly burned.

Although he says in rare cases it is not necessary.
Maybe we will be lucky!

Bigboy4u
11-01-2009, 11:39 AM
Yes I'm going to leave it till i need it as well did you see my story on 'oral survivors-support' google it go to 'Introductions' then 'Please help'join! its very proactive great site, name Teacher jon

let me know anything you can, including your diet and how your swallowing and eating. And feeling with chemo.
is your lymph node massed mine is 6 cm not good.

willybang
11-01-2009, 09:15 PM
Yes my left side has one massed Lymph node (5cms) and two smaller swellings
down by my collar bone and one small swelling by the collar bone on the right side.
All lit up the MRI like a beacon!

Bigboy4u
11-02-2009, 04:44 AM
Hi yes we are so similar I hope we are both here to tell a good story in five years time also then we can have a real party.

It will be interesting to see how you and me get on with the Chemo Curse and how we do with speaking after it and eating with out a PEG.

chat soon keep us Informed

Bigboy4u
01-11-2010, 04:18 AM
Hi after compleating all my rad and with 2 more chemo to go I have a problem eating so hows you doing?

willybang
12-26-2010, 02:44 AM
I have been remiss in not revisiting here and updating.
The Journey has been a time and thought consuming effort at times.

However,

Fortunately for me I am a very strong minded and determined
individual and my Doctors are convinced it was factor during
my treatment and post treatment.

At the beginning of Nov last year I started my treatment.
Eight weeks of Maximum dose Radiotherapy Mon-Fri
Coupled with a nine hour Chemo (Cisplatin) drip every Monday.
It wasn't a pleasant experience and by the time it was over on
6th Jan I was a bit of a mess both inside and outside of my neck.
I ran a little blog here which has updates and photos.

http://willybang.wordpress.com/

Excellent medication miraculously cleared up the external
damage in just over two weeks but the inside was another
matter and eating has been difficult. I lost over 40lbs but
eventually returned to a healthy weight thanks to Nutricia
Fortisips and Shakes. 12 months later I am still on a 70%
liquid diet due to damaged saliva glands and lack of taste.

But the good news is that in March I had a Full body scan in
one of the UK's new "Super Scanners" and my Cancer was gone!

Monthly physicals until November have been excellent and I
have now been moved to Bi monthly check ups!

Its not all been plain Sailing, eating is still an issue,
as is dry mouth at night causing sleep issues which is a pain.
But I am still here, 12 months on and looking to the future.
Back to a healthy weight, looking good and back to work full time.
So I guess I am now officially a "Cancer Survivor!"

And if you are reading this looking for inspiration as I was
12 months ago. Please make every effort to Stay positive!
As there's absolutely no reason to think that you can't ride
out the treatment and be as fortunate as I was.

Well thats my Cancer Journey up to now.
Obviously like all Survivors I will be keeping a close look over my
shoulder hoping the damn thing doesn't come back for another go.
Thats simply the legacy it leaves, but I won't let it worry me.

Best Wishes

Mark

jandfi
02-14-2011, 09:08 PM
hi, im a 43 year old female and have been diagnosed with a tongue base swelling and/or enlarged lingual tonsils. I was diagnosed by a scope and mri as i have been having ear pressure/fullness when swallowing for quite a while. I have to have biopsy and am now absolutely terrified of receiving a diagnosis of stage four tongue base cancer as the internet does not make that good reading...... However, I was told it could be just swollen tissue but as it is just on one side, I am not convinced I think they were trying to reassure me. Apparently I also need the biopsy because of my symptoms.

Did any of you have this sort of symptom and how are you all doing? I hope you all doing well.

I think I am looking for some optimism and encouragement if the worse comes to the worse.

Thank you
Jane

Bigboy4u
03-20-2011, 10:08 PM
Hi Guys I lost this forum now been looking for it and I can report I thought I was back to normal a year after my treatment that was horrendous, but I go through it and after 12 weeks started to feel almost normal after losing 27 kilo grams

Now I have reported to the doctor after one year from my treatment I have the wringing in my ears again that I think started the tumor and nor 3 of my left hand fingers have slight pins and needle and numbness as it was in my worst period.
I have to go back to the hospital for a New MIR after having only Tomo radiation 35 with 4 chemoís Cisplatin.
Iím hoping it is not a new tumor but with these two symptoms I think it is.

Does anyone know if I can have any more radiation or do I have to have surgery now as the doctors suggested?

erics
03-29-2011, 06:33 AM
Hello forum,

I searched tongue cancer in google because I am concerned that I have a few symptoms. About a month ago I noticed I was very sensitive to eating hot / spicy foods - which I used to love! Then I noticed my tongue was on fire!!! Soon after, these symptoms grew into actual mouth lesions, deformed, red outline circles, burning in the center. I have done some research and believe two things, cancer or ulcers. Up until 2 weeks ago I wanted to believe they are ulcers but I am still un-sure. Still debating the dr. visit. I will be going soon. I have 4 - 6 mouth sores, blister like lesions on tongue. They aren't very big, maybe pimple size - 1 is large circular ring on center of tongue. They all are very sensitive to spicy / hot food. Also, salt and various spices. I have since 1 week ago changed my diet and my tongue seems to feel better. Does this sound like oral cancer of the tongue? I do have 1 blister like towards back left side of tongue. It looks white in color - has not grown and since my diet change has reduced in white color and a bit in size. I have tested that whenever I eat hot / spicy food they all become inflamed! Red - and burn. Please someone shed some light on the subject? I am 23, and I would like to believe that I am OK. I have no other symptoms as I can tell - obviously not a med student. Thank you everyone! Best wishes to all.

Noon
04-21-2011, 06:06 AM
Hi,

My brother has been diagnosed with a cancer on his tongue as well. I've been trying to prepare the proper food for him. But I'm getting some mixed information on nutrition/foods. One source says lean beef is fine but another says it is better to substitute it with other meat. Pretty much all sources say sugar is bad but Oral Cancer Foundation recommends shakes and icecream during treatment.

What are you guys are eating? I've been following the guideline from a book, Cancer Fighting Kitchen. I've been using pure organic Agave syrup and organice pure maple syrup instead of sugar. But what about lean beef? Or shrimp or scalop? Any idea?

I appreciate your replies in advance.

Noon

brainman
04-21-2011, 08:47 PM
Hi Bigboy4u. I am glad to see you back but sorry for the reason for your return. I indeed hope it is not a recurrence. I am not sure what treatments you will receive but it sounds like radiation is out of the question. It sounds like you have already received the maximum life time dosage allowed. Keep use informed. You are in my thoughts and prayers.

ladybug blue
10-01-2012, 08:49 PM
glad to find this thread my hubby has just completed chemo and radio for BOT cancer and I jet found a large flat mass on the back of his neck...and am frightened, any ideas out there? will call dr tomorrow was looking online he also has bad sweats 9like soaking the bed and his clothes) and that seems to be a lymph related ca????? thanks for any comms, nice to know there is a network there

Patty jean
10-20-2012, 05:46 AM
Please get a second opinion. I did with my cancer of the tonsil and neck lymph node. My tongue could have a small area of involvement. I immediately made an appointment with the Mayo Clinic and will have surgery October 31. If the surgeon gets clean margins, I won't have to have chemo or radiation. From what I have read they can treat tongue cancer with radiation. Please get a second opinion. Patty Jean

Jeff15490
10-20-2012, 08:57 AM
But brainman alredy said he got the max life time dose... Sounds just like an ulcer tho tongue cancer would be like 1 big tumor in 1 spot not a whole bunch of baby ones in alot of spots.

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