Can you help! Base of the tongue cancer help.

Bigboy4u · Regular Joined: 12 Sep 2009 Posts: 14

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 · Moderator Joined: 06 Oct 2005 Posts: 237

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.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

Bigboy4u · Regular Joined: 12 Sep 2009 Posts: 14

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 · New User Joined: 11 Oct 2009 Posts: 1 Location: London UK

[quote="Bigboy4u"]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[/quote]

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 · Regular Joined: 12 Sep 2009 Posts: 14

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 · New User Joined: 31 Oct 2009 Posts: 4

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
_________________
Male, 52 Yrs Old, Diagnosed Mid Oct 09 with squamous cell Cancer at the base of my Tongue.
Secondary Metastatic cancer in Lymph nodes both sides of neck.
Scheduled to begin Radiotherapy & Chemo on 23rd Nov for 7 weeks.

Bigboy4u · Regular Joined: 12 Sep 2009 Posts: 14

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 · New User Joined: 31 Oct 2009 Posts: 4

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!
_________________
Male, 52 Yrs Old, Diagnosed Mid Oct 09 with squamous cell Cancer at the base of my Tongue.
Secondary Metastatic cancer in Lymph nodes both sides of neck.
Scheduled to begin Radiotherapy & Chemo on 23rd Nov for 7 weeks.

Bigboy4u · Regular Joined: 12 Sep 2009 Posts: 14

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 · New User Joined: 31 Oct 2009 Posts: 4

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!
_________________
Male, 52 Yrs Old, Diagnosed Mid Oct 09 with squamous cell Cancer at the base of my Tongue.
Secondary Metastatic cancer in Lymph nodes both sides of neck.
Scheduled to begin Radiotherapy & Chemo on 23rd Nov for 7 weeks.

Bigboy4u · Regular Joined: 12 Sep 2009 Posts: 14

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

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