Greetings,
This is my first post and I am seeking information regarding my friend Tim's oral cancer. Tims father had skin cancer surgerys constantly and it really turned Tim off to the success rate of skin cancer removal some ten years ago. His father died from a procedure to drain fluid from his lungs. He apparently underwent this every year or so but when they drained the 'fluid' the last time, he never returned from the hospital and passed away some 28 days after that final procedure. He just lost weight rapidly, ect. I am suspecting that perhaps Tims father's skin cancer may have become lung cancer and he just didnt want the family to know?
In any event, Tim had a surgical procedure 3/13 in which a specialist was 'burning' away some small lesions, this one on his cheek when apparently the surgeon burned 'all the way through' his cheek and stopped there (a 'whoops' was heard). Later, before they patched him up, he told me he had a cigarette outside and actually saw smoke come out through his cheek (another 'whoops'). Then, within about 6 weeks, am agressive cyst began forming and is now almost an inch in diameter and the thickness of his cheek. He got sick a few weeks ago and is still barely hanging on to that cough. Smoker. He works in HVAC and works gives him satisfaction, but increasing headaches and pain have now forced him to begin morphine and hes becoming less able to keep it focused and energetic while working. THe local specialist just confirmed with him that if he goes into surgery or radiation, chemo it will be a long and painful experience and without he gives Tim 6 months to 2 years. I believe Tims experience with seeing his father suffer thru surgery after surgery on his face, neck and arms has left him believing that surgery is not very successful. I beieve he has impressed his doctor to believe that the best course for him is to do nothing and to enjoy his dwindling time, because he feels if he goes into surgery, ect. that would take a year off of a life that might only have two left anyways. I think his lymph nodes might have cancer but I cant say for sure, either way its getting CLOSE!
My questions are:
1.Can a nasty cold or virus/cough make your lymph nodes in the lower jaw swell?
2. If Tim does not have an insurance plan can he be seen by a special cancer center?
3. It the cancer has not traveled to a lymph node yet, how successful are large cheek surgerys (it may be in his jaw, Im not sure right now)?
He has little spots of skin cancer still on his arms, scalp and neck.
4. Ive read that 'end-stage' cancer is usually when it has spread to the liverlung or the brain, is this perhaps what his father was suffering?
Thank you so much.
Greg

Greg,

Wow, who in the hell is telling Tim all these things????

Head and neck cancers are very treatable. Who confirmed his cancer and who Staged him?

Infection can cause the neck nodes to swell but they are usually painful and swollen nodes caused by SCC are usually painless.

Most Comprehensive Cancer Centers, think MD Anderson in Dallas, usually take patients without insurance but do call ahead.

Many here have had comprehensive surgeries and are here years later still posting every day.

Skin cancer has nothing to do with head and neck and obviously must be dealt with separately.

So here's what I would do:

1. GET HIM TO STOP SMOKING REGARDLESS,

2. Get him referred to a large cancer center, called NCI Designated Comprehensive Cancer Centers, like MD Anderson in Dallas and get a their opinion.

You are a very good friend Greg. Good luck.

Welcome to OCF!

Your friend needs to go to a CCC right away and get a team of specialists who are all working together to check him out. Im not sure what type of doctor has been treating Tim but to me it sounds like they are not affiliated with a CCC.

The cigs need to go, NOW! If he is to have any chance, encourage him to get rid of them immediately. I am a former smoker and know its not easy, I quit cold turkey myself so I know it is possible if the will to succeed is there.

Ive seen plenty of patients here get treated without insurance. You cant get help if you dont try. He needs to start calling all the NCI top hospitals on the list and explain his situation. Some have programs available to help the uninsured.

Without a biopsy its not possible to determine if the "spots" are cancerous or not. He needs to go to a treatment center where they will biopsy the "spots" and determine what he has going on.

Ive had not only part of my cheek removed, but also my lower half of my jawbone and Im still here. There is no reason to quit before he even tries. I do understand the feeling of hopelessness and fear myself. I almost quit without getting treated as I thought I was going to not get thru it anyway so why bother. But the difference between us is.... I already went thru OC twice before. Sure, it might not be easy but at this point to me it sounds like his cancer is very treatable.

Wishing your friend all the very best with everything!!!! You can email these posts to him or even print them out and send them. Let your friend know you are there for him and in his corner. Too often, patients without a good support system dont fare as well as those with a large family around to help them. Your friend is fortunate to have you in his corner.

Good luck!!!

CCC List

Hi there - I am going to ditto what everyone here said.

Your friend is afraid. Has he had a specific diagnosis? whoever he went to is a bit of a quack. Ideally once oral cancer is confirmed, he should firstly have a CT/PET/MRI to confirm size, location and spread.

Also being that it is in his oral mucosa it's likely not HPV related, so the smoking has to go.

Some info on oral cancer.

If it is HPV related it responds really well to radiation and chemo.

Burning the cancer through his cheek sounds barbaric. I get the premise of burning a lesion but ideally they should have surgically excised it sent the tissue for pathology, and if it was large enough (which it sounds like it was) a graft should have been put in place. This is usually done by an ENT who deals specifically with oral cancer as it is quite a procedure.

Depending on the pathology results - if there are any after burning it away (highly unlikely ??!!!) they would determine if he needs radiation and chemo.

For a lot of cancers this is a long drawn out horrible process (6 months? a year? indefinite?). With oral cancer it's actually 6-7 weeks of BAD. They may do a few shots of induction chemo to soften up and possibly shrink the tumor prior to radiation, if it hasn't already been removed - then they do 6 weeks or 3 weeks of chemo (this depends on the facility and medical oncologist - often it is the same chemo - but delivered in large of smaller doses) in conjunction with radiation. Chemo alone does NOT KILL oral cancer.

Of the 6 - 7 weeks - the latter half of them (starting at around week 4 and continuing for around two weeks after - things are HIGHLY UNPLEASANT to HORRIFIC depending on your pain tolerance. However this is nothing compared to dying of oral cancer.

At this point I am not even sure he has been diagnosed with oral SCC as the only way to determine that is to have a biopsy. I'm assuming this was done before they burned away the lesion?

regardless this sounds very mismanaged.

Oral cancer is often curable if the proper protocol is followed, and it is caught before it metastasizes beyond the local region of the nodes. The more nodes involved, the harder it is to catch.

He's only making the situation worse by continuing to smoke.

and his father probably had terminal cancer if he was going annually to have his lungs drained. My friend in the final stages of her life was having them drained weekly.

This is the problem with parents not being open with their children about what is going on. They scare the crap out of them instead of teaching them advocacy and education.

hugs and best of luck. I think your other questions were answered by everyone else.

take care

Dear David, Christine and Cheryl,
thank you so much for your support and information. I am definitely looking into it more and I will be seeing Tim tomorrow and showing him these posts. This is quite a forum and a network and I am very inspired by the commradarie. I dont even have cancer myself (that I know of), and I am blown away by the power of one little sore under your tongue, ect and the amazing fortitude and determination presented by all of you. I requested to get some of Tims medical papers, diagnosis from him, ect. so that I can chart some of these things in the 'signature', is there a page that describes all of the abbreviations? As Im sure your aware, its a little difficult to get information from doctors, even if your immediate family, and well Tim can be a little stubborn in disclosing the facts or diagnosis papers that Im asking from him. Do you know if there is a way that I can speak with his most current Doctors and get the scoop. I think after Tim sees these forum responses he may be inspired.
I see theres a CCC in Sacramento at UCDavis. He had his skin cancers biopsied by a skin cancer doctor here in Reno. and as you can tell, I am struggling a little to learn some of these abbreviations: HPV, OC.
HOw is a NCI different from a CCC?
So to keep Head and Neck cancer (this includes oral I presume) from skin cancer, the story as I can last figure is: He has skin cancer, mostly BCC and SCC, I believe very little, in no melanoma. He had a growth that got larger over his right eye and about 18months ago started a process to biopsy and remove these growths. The one on his eye worried us the most, but it was successfully removed and then they started to set apps to remove the other 'freckles' or small, white spots of cancer on his arms and neck. The one time he went into see this doctor it was to remove a small, pea sized freckle that was 'on' his cheek, but may have been inside his cheek, Ill have to confirm later. The doctor cut, or burned it away I believe, and it was then that he went 'through'the cheek, smoked, ect. This was 6 months ago and it is the cyst that has developed in this place, that has grown and is a little disfiguring and has causing Tim jam to not open as wide, for due to a 'pop', and pain in the mouth and so he cannot eat as before. It seems like its furious, may or may not be at the nodes yet, and so I dont know if this is now 'skin' cancer or oral, ect. After reading about all of your surgeries, jaw removals, ect. I said to Tim, by looking at him. hes fine..I mean removing a cheek doesnt sound as bad as removing a jaw, and even then, there are lots of forum people here who have or are doing it, and I say DO IT, it thats what is needed. Another note, is that Tims father apparently had portions of both of his ears removed, scraping, ect done..and to that I would say, well..yeah theres some surgeries that are perhaps preferred over others and well, surgeries are surgeries..it seems to me that the most awful part of cancer treatment would have to be the radiation like you were saying Cheryl. Would anyone else agree to that? So, quitting smoking..yes, no fun, but doable surgery..no fun,but yet again doable..RADIATION..NO FUN..AND BARELY DOABLE. Is that the gist of it?? Its really terrible eh? So if I get him down to the CCC at UCDAVIS, asap and get him to stop smoking, and get an agressive, comprehensive evaluation down there, will this do more for us than the local Reno hospital and cancer referal doctors that hes been sent to here can do? Because I study science (engineering), I am cluing in on just how much research and effort is/has been going into Cancer research. From the procedural chart that I read, it appears to me that with clinical trials, ect, EVERY little bit of info is recorded and utilized to the fullest and is compounded daily in the fight against cancer. If this is so, then what treatments his father recieved 10 years ago might be very different today? And the steps and knowledge taken upon the course of each patient is highly evolved and prognosis for survival is higher each year?
Once again, thanks so much to you Christine, David and Cheryl. I will slowly try and absorb this info and work with Tim to at least get to UC Davis, and perhaps for the both of us to quit smoking asao.
Regards, GREG
The ba

Greg - Until someone gets to you re some of your other comments and questions, here is a recently updated list of oral cancer related abbreviations:

http://web.utk.edu/~aalix/abbreviations2.html

Looks like you will have to copy and paste the above url.

[quote=gregcreno]How is a NCI different from a CCC?[/quote]
The National Cancer Institute (NCI) funds most of the cancer research in the U.S. If an institution is listed as an "NCI-designated CCC" (comprehensive cancer center) or "NCI-designated CC" (cancer center), it means that the institution has undergone a rigorous review process examining the quality and scope of its research interests. The difference between NCI-designated CCCs and CCs is that the CCCs conduct research in three broad areas (clinical, laboratory and population-based) while CCs concentrate in one or two of those. Institutions choose to apply for NCI designation, which can lead to additional research funding and open the door to a wider variety of clinical trials, and the approval process can take as long as a decade. For more information on the application process, see here.

Just to confuse matters, the phrase "comprehensive cancer center" or CCC is also used on these message boards to refer to an institution -- not necessarily an NCI-designated one -- that uses a multidisciplinary team approach for each case, bringing together specialists from a variety of areas (surgery, chemo, radiation, etc.) to work together to develop an individualized treatment plan. Wherever your friends ends up for treatment, it should be at a place that takes this approach.

Due to HIPPA (sp?) laws you would not be allowed to discuss anything at all with any of Tims medical staff unless he would sign forms saying its ok.

If you read the Forum Etiquette thread, you will get a list of abbreviations and detailed info on how to make a signature.

Your friend has to see the big picture with smoking. If he doesnt really want to quit he will never do it successfully. Let this be his wakeup call. Hopefully he will realize its only a matter of time before the cigs (or any tobacco use) will turn into a serious problem (as if this scare isnt big enough). I worked with the CDC and TRUTH on anti-smoking campaigns and have been to many schools talking with thousands of children about the dangers of smoking. Its a shame that tobacco is so addictive that people cant quit as easily as they pick it up. Maybe the following info will change his mind.

CDC's Tips From Former Smokers Christine

Unsweetened Truth Campaign

Without knowing in detail your friend's fathers medical issues you cant compare them. At this time oral cancer has not been scientifically proven to be anything that can be caused genetically.

You did get the gist of the treatment - (everyone else has answered your questions somewhat)

surgery - doable
chemo - (depending on your reaction to it doable - some people are nauseated from beginning to end, some people aren't bothered by it at all)
radiation - depending on the person - very bad - HORRRIFIC - but doable.

If he has SCC skin cancer - and the dr. burned through his cheek then there is a good chance stray cells from that area can move inside to his oral cavity and grow there. His smoking exacerbates the situation as it is an IRRITANT.

best of luck and you are a good friend tell him to fight for himself.

Greg, there is hope for your friend with respect to the radiation. I'm speaking as one who got Eight weeks of it.

My first Medical Oncologist (MO) tried to frighten me with horrific verbal descriptions of how he was going to have my throat light up like the chicago fire and therefore I should have a PEG (feeding tube) surgically inserted into my stomach before the start of the treatments.

I declined to have the PEG, and did not need it. In fact, I had no noticeable affects from the radiation*, beyond the fact that the tumors were all gone and there was not detectable cancer when I had my first post-Treatment PET scan.

My second MO subsequently told me that about 10% of patients have similar experience, so factor that in. Ten percent is not a bad number, when you consider that it means NO adverse impact.

Let me qualify my "no adverse impacts" statement. I did lose about 1/2 of my salivary production (burned up saliva glands.) That resulted in a permanent case of regularly recurring dry-mouth, but since this is easily dealt with, it doesn't occur to me as much of an adverse impact. Chewing a piece of gum that was sweetened with Xylitol, rather than sucrose, keeps the mouth wet as long as you chew it.

Oh yeah, my beard fell out. I had my cat on my lap, stroking him and had to get up to go the the bathroom, where I caught a glimpse of myself in the mirror and noticed a weird pattern of white specs on my black shirt. Every whisker on my face below a line from one corner of my mouth, around the back to below my pony tail (RIP) and on to the other corner of my mouth, was gone.

Above that line, nothing changed! Below, smooth as a baby's backside!

Not what I'd call much of an impact, but I include it in the interests of full-disclosure.

Good luck to your friend, he's lucky to have you in his corner! And you, sir, are a good man!