Hey John
glad to see you found your way here without too much trouble.

David ..my friend lol iknew i could count on you to jump right in there thanks.
Just to fill you in,John has been on the mouth cancer foundation site and the help although excellent in the basics is a bit short on experience of induction chemo as a choice before going straight to the total glossectomy and laryngectomy.

John needs loads of advice from anyone who has had this treatment and also those who have gone the surgery route,and he certainly needs help with his feelings of fear and that "its cancer i am going to die " thing

i know you will pull out the stops guys

liz xx

John,

First we need to wait to find out IF you have cancer and what the pathology report says. Then perhaps they need to do a PET or a FNA of the node.

Assuming it is cancer:

I would also find out who tests for HPV and get your cancer slides sent off and get those results next. Over here it doesn't take more than a couple of weeks to get the HPV results.

Then I would consider their recommendations but I personally wouldn't let anyone start surgery until I knew more.

John,
You really need to start your own thread or your post may get lost with people answering Shelly. Go to the introduce myself forum and click on new topic, then copy your original post into it. Pick a title like 'need info on induction chemo' or 'total glossectomy and laryngectomy'. Be certain to give us an update when you get the results back on Saturday. Ask as many questions as you want and read Miskate's blog.

Take care,
Eileen

Jon,

Bill was diagnosed with stage 4 Base of Tongue cancer and had a mass that was encroaching past the halfway mark on the back of his tongue from right to left. He had no nodal involvement. After being seen at a Comprehensive Cancer Center here in Florida, the decision was made to treat him with concurrent radiation and chemo (surgery only if this was not successful) and so far, the tumor is gone and no sign of recurrance. He will celebrate 2 years from the last treatment on October 1.

Wanted to give you info that you might not have to have such severe surgery first and that there is hope.

Wishing you strength during this time...we all know how you feel.

Deb

Thats so encouraging and just the sort of example i was looking for to give john a bit of perspective,thanks debs

Hi Cookey thanks for your wonderful Inroduction I feel as though Im at a party not a cancer forum.

Wow this is wonderful Guys, yes as you can Imagine my life has turned up side down my medical insurance is minimal in Thailand and I have just found out if I have been out of the country of England where I come from, for more than 2 years less is some cases, I now have to pay for any medical treatment, I hope this can be side stepped with Cancer or I�m going to be given a quick death sentence.

I was told because the lymph node is swelling up and starting to mass the Cancer could of starting to get stronger and the Chemo and Radiation will not be so effective in the base of my tongue, to kill it. I don�t know if this is true any advise.

Any other Information you can give, especially about the latest drugs on the markets Id be sure grateful

Ok back later, amazing quick response thanks Guys, see I�m already sounding American lol

debandbill that is wonderful news, I can only prey I have to same luck, but the doctor said, it looks like the tongue will have to come out, so as you say see what the Biopsy says, if anything, he also said as its very deep down my tongue vase, he does not know if he could get to it and will have to do it again may be. Ill let you know. Did Bill have the new drugs on the markets as well?

Jon,

First, it sounds like you do have nodal involvement but that still does not mean that you have to have surgery first. I am definitely not a medical expert but have seen others here on the board with T3-4 tumors with positive nodes be treated with chemo & radiation only and had success.

See my signature at the bottom?? That is how you find the history of each of us as we post..timelines..etc. You need to do the same by going to My Stuff and at the bottom fill out your current diagnosis and other pertinent info.

Back to the drugs...Bill was treated with weekly Cisplatin and Taxol and you will mostly see these drugs, especially Cis or a sister drug Carboplatin along with possibly Erbitux and some with 5Fu. Some receive the chemo weekly..some in three doses a couple of weeks apart...some before radiation begins(induction) as well as concurrently.

The reason the doctors did not suggest surgery at all at first for Bill was because the tumor was so involved that the surgery would have been radical and life altering. You need to check and see what type of radiation treatments are available...do they have the latest equipment that targets the tumor and somewhat shields healthy tissue. Look for the words IMRT..TOMO..anything that uses computers to target exacting places in your head and neck.

To be succinct...the chemo is simply a tool to make tumor cells more suceptable to radiation. Radiation is what will do the major part of the killing.

When you have better info from your biopsy and further tests...then you can make a decision. We here in the US can seek 2nd and 3rd opinions regarding a diagnosis and treatment plan. Not knowing what kind of facility you are using, I can't comment but I do know that this is your life we are talking about and you need to be aggressive about where and how you are treated. It will require stepping out of your comfort zone and being a strong advocate for yourself...not easy, believe me.

Keep us informed,

Deb

Oh by the way Jon, the Main OCF site (see above) is a wealth of information on any subject. Spend time there reading everything..very beneficial.

Deb

Hi guys thanks for your comments, I have not got my biopsy results yet, but the doctor here, says, its 80 chance of Base of the tongue cancer, as my left side Lymph node is swollen and grown a 1/3 more in 2 weeks.
I hope they can start radiation treatment soon as I�m worried it is spreading fast even though the doctor says it may be started about 4 to 6 months ago I only noticed a mouth ulcer about 8 weeks ago and the node swell about 6 weeks ago.
So I do not know where I go from here ill have to wait till next Friday when I get the results back of the biopsy he also said they may come back negative if he has not gone far enough down the back of my tongue for the biopsy and will have to do another one deeper down my throat yuk.
Anything you can tell me about the treatment and what to expect I would appreciate.

kind regards Jon

Jon,

I know you are worried but as of yet you have not been Dx'ed with any cancer so let's wait until we see what the path report says. Why didn't they do a Fine Needle Aspiration (FNA) of the node while they were at it?