Hello,
I am really reluctant to ask for help and advice, and if I was not so confused and scared I probably would not. I think some of my symptoms are pure stress related, and I am more than aware of the people who are hatefull of this. I feel my face is completely numb and swallowing generates a dry crunching sensation in my throat. The throat symptom was the one I presented to my doctor with a lump on my soft palate. He refersd me to a maxillofacial surgeon. The surgeon inspected the lump and said it was were the two muscles meet in the roof of the mouth, one of them is fiberous and is the resulting lump. I have no reason to doubt this, but can't help BUT doubt it. He said he was so sure that he did not need to do a biopsy. I have looked all over the internet, used all types of descriptions in search engines, nothing other than minor saliva gland tumor (benign or otherwise) ever comes back. I also felt a small swelling in my neck, a node about the size of a kydney bean is there but comes and goes, does this not mean anything.
There are lots of things but I can't think straight enough to put them down. I pray I am just over reacting and will wake up soon. Reality, my doctor has inspected me, also a maxillofacial surgeon. I think maybe all I have read in the last few weeks has really got to me, does this sound sensible. A voice is really needed.
Oscar

Hi Oscar,

I can feel your stress and fear through your post. Many Doctors have missed DX oral cancer more than once. I would get a referral to a ENT and demand a biospy of the lump. You have to be your own advocate as it is your life they are dealing with. For piece of mind I would demand a biospy. Better to error on the safe side than rely on his judgement.
I went to my primary care physican three times for a sore throat and the first two times she blew it off as nothing. I only wish I knew then what I know now. Anything that doesn't heal in two weeks has to be checked further.

A second opinion is warrented here!!!

Dan

Hi Oscar,
and welcome to the forum. We have all freaked out at one point or another so you lots of company here. Remember when you read things here that many posters have had much more severe issues than the norm so it's easy to read the worst case scenario into it. I kept doing the "do your diagnosis stuff" and was wrong most of the time (I actually thought that one of my salivary glands was a recurrence) :p . These guys really do earn their medical degrees. The internet "information superhighway" is full of chuckholes too. I still have areas in my throat that change from time to time, sometimes day to day, and it's perfectly normal. You will be noticing things that have probably been there all along but now that you are good and scared they take on a life of their own (and that's ok because oral cancer is pretty scary stuff).

One other thing I discovered is that there are lots of knots in the muscles in the lower neck. This is very common, especially in people who work at computers a lot. If you have lumps in the upper neck these need to be investigated.

If, in the unlikely possibility that it is cancer than the quicker you have a accurate diagnosis and get into treatment, the better the outcome. If you don't have complete confidence in the current diagnosis (and it sounds like you don't or you wouldn't be posting here) then I would find the closest comprehensive cancer center and get a referal to a head and neck surgeon - and don't delay.

You didn't mention any other tests but a typical workup for head and neck would include:

MRI (sometimes CT)
PET (or PET/CT)
Chest x-ray
Nasolarygnascope (sp?). Fiberoptic scope down the nose
Direct visualization with mirrors and palpation
Biopsy/pathology report
blood work ups
kidney function test
hearing test

Except for the hearing test and kidney function (these are more related to the treatment part of it), these are ALL of the steps and data needed to have an accurate diagnosis.

Brian is a physiology wiz so I am sure he will have some things to tell you also.

Many things could be causing the symptoms you are describing. Don't freak out yet - it's NOT cancer until the pathology report is in. Keep us updated.

I am not embarrassed to admit that I took anti-anxiety medications for a long time.

Hi Gary,
Why do we need a kidney function test? It's the first time I have heard of this and am curious.
To Oscar,
If I've learned one thing it's that peace of mind is the name of the game here. Rather then search the internet for things that will scare the heck out of you, go get a biopsy done and then there can be no guessing. We all know what it's like to wonder and worry so please do what you can to take that anxiety out of your life.
Minnie

Daniel, Gary,
Thank you very much for responding.
Your words help very much.
Oscar.

Thank you Minnie,

I appreciate and take on board all that has been said.

Oscar

Minnie,
A kidney function test is a requirement for people getting chemotherapy. It's no big deal, they (actually you) collect and measure your urine output over a 24 hr time period.

Oscar,
although the term "biopsy" is a little creepy, they just take a tiny little snip and it is painless. They will numb you first.

What's a "maxillofacial surgeon"? Is that the same as an ENT? The point Dan and I were trying to make also is that cancer is easily misdiagnosed by health care providers outside of the head and neck specialty. The throat is one of the most sensitive and complex areas in the human body. That is why we univerally recommend seeing a head & neck surgeon or ENT, and preferrably one who sees a lot of cancer patients.

Hi all, A maxillofacial surgeon is similar to an oral surgeon, Maxilla = upper jaw

Not the same as an ENT

Hi,
Maxillofacial is a medical doctor, and also a dentist. (maybe not in that order ) Some may believe (I am inclined to agree) that one doctorate is enough to contend with (specialise in). By all means combine the two if a multi skill environment is an intention. But we are not talking electronic/electrics/mechanics here. Its fixing lives, not constructing materials. Should the neurologist become a neuro/cosmetic surgeon with a diploma in chidbirth. We can extend accolades to silver, gold and platinum, solid intent fortitude and Man United will always prevail.
Oscar

Nice Post Gary,

The point is you want a ENT Doctor that sees allot of oral cancer victims. I will never rely on a Doctors "judgement" in my lifetime again!!
No one gave me cancer and certianley not the Doctor. However when you don't know, Say so and call in the experts. Thats all I ask. Most people are afraid to challange a Doctor, Well they aren't much different than the average guy/girl. They are human and do make mistakes. We are the ones that have to live with their mistakes.

Oscar, Learn as much as you can and ask allot of questions about options and side effects. It's your life were talking about here!!!

Dan

Hi Dan,

I am asking as many questions as I can. The 'lack' of answers in some cases doesnt help, but not all people are sympathetic to somebody who is merely frightened of getting, rather than got. I supose also the way to go is a big question, (I am just pre-emting 'ifs') interms of using complamentry backup.

Also, if you get time Brian, I would really appreciate your opinion of my maxillofacial appointment. I really feel the man thinks i've had the lump ten years, its got to be benign, and is obviously not growing. He therefore thinks it better to leave well alone. The little muscle tale he hopes will act as a reinforcement, and be a genuine aid for my benefit.
Oscar

This post was edited on March 3rd by Brian Hill to remove a link to a web site which while containing some good information was rampant with half truths and scientifically undocumentable ideas.

Hi Oscar,
I went and looked at the site that you refered to and like the "new age" is full of half truths. It is true that more biopsies are given than necessary for mammography. They are still sorting out the "false positive" rates for different detection schemes. There is also a major push for early detection in mammography and also a congress mandated "Mammography Quality Assurance Act". Comparing this with head & cancer cancer is comparing apples and oranges. Did they mention also that the death rate from breast cancer is greatly diminshed because of early diagnosis?

Squamous cell carcinoma can metasticize quite readily without any "help". Most deaths from the disease occur either from metastesis or "occult" tumors not discovered in the first diagnosis.

With ANY medical procedure there is always a risk/benefit. Some people die from biopsy procedures of various types (I haven't heard of anyone dying from a head & neck biopsy).

When they started (briefly -after the data was in they rolled back their thoughts about the efficacy) enhanced screening for prostate cancer the death rate from biopsy procedures went up 5% - but not because of cancer but because of septic poisoning from the location of the biopsy through the rectal wall.

Oscar I'm going to lay it out straight to you: Quit screwing with this. Get a qualified head & neck surgeon or ENT with a proven track record for head & neck cancer, get the biosy and sleep better at night knowing that you don't a ticking time bomb that will kill you. Procrastination, denial or misdiagnosis has killed more than one person on this site. Let's not add you to the list.

Considering that the death rate is about 50% I don't think any realistic person in the medical profession is going to fault you for your fear so don't let guilt from this cloud your judgement.

DISCLAIMER:
All of information on the good old "information superhighway" is a wonderful thing but full of unvalidated, unscientific opinions, irrelevancy, quack cures and dangerous information, sprinkled in with legitimate information. You practically need a medical degree to sort through it. Brian has a panel of doctors who screen any information that is offered elswhere on the site. Scientific articles and newsbreaking items offered here are subjected to scientific scrutiny before they are offered for public consumption.

Thanks Gary,

Another view of the same subject: In the case of head and neck cancers (SCC), often the first indication or symptom of the disease is a lump in the neck. This lump is not usually the cancer primary site (it is not the tumor) Instead it is a lymph node that is attempting to trap and contain the already spreading cancer cells. I suppose there is a risk of releasing the cancer by puncturing the node, but it is far less risky than general surgery to accomplish the biopsy. Not every lump is cancer.

The issue is really fairly easy and logical. If you do biopsy and it is not cancer then no harm done. If it is cancer then you know and are able to proceed immediately with treatments which in my opinion will give you the best chance of winning.

Better results long term are with early diagnosis and treatment. Watch and wait are not words to use when dealing with oral cancers. (probably any cancers)

Oscar, also for what it's worth, when I had my recurrance I had gone to both the ENT and Oncologist with a lump in my neck a couple of times, and they both thought it was nothing. Finally a second ENT who specializes in head and neck cancers and was actually the first ENT's professor in college, took a look at it, and insisted on PET/CT. Even after PET/CT showed it as a hot spot, the first two just thought "infection" and gave me antibiotics. Only after follow up PET/CT a month later followed by a needle biopsy did they finally know it realy was malignant and did a second neck dissection.

Thing is, quit fooling around with maxillofacial surgeon, (don't tick him off though, they can be real good at putting you back together after the primary surgery) and see a good head and neck ENT.

Good luck. Another Man United fan.
Bob

Thank You Mark, and JetAgedHobo

I feel humble, but not defeated. M.U. fans in far away, but friendly places, God Bless.
Oscar

Weird type of feeling when you have some thing edited. Its a first for me, and I am sorry for it.
Oscar

After my weird feeling above, I just want it to be known there is nothing wrong with me. Its everybody else :rolleyes:

Oscar, since there are no posted rules, you could not have known, but if it is any consolation, my day starts out at least 3 times a week by taking posts down that are put up in the night by some company or profiteer who wants people to buy his miracle cure, travel to Mexico for treatments that have no documentation and more. We try to keep the information correct. Given that, realize that there is a lot that we don't know, and that includes the doctors that are researchers that I pass things by. We don't delete everything... Our first concern is that we don't perpetuate myths, unproven remedies, or comments that are scientifically incorrect whether by private individuals or by doctors themselves. And this should make you feel better.... two months ago I had one of the doctors that reads our board call ME up and tell me that I was inaccurate in my statistics and information, and who sent me the most current peer reviewed article asking me to correct the posting that I had put up. So you are not alone in getting edited.

Hi Brian,

Your concerns are well founded. With hindsight I would not of used the link.

Oscar

I done as advised above. This time a camera was inserted up my nose and down the back of my throat. The ENT doctor was explaining what everything was on the monitor. I had several nasal polyps, he thinks my symptoms are a result of post nasal drip PND. Like the first specialist he palpated the lump in roof of my mouth and said it is a fibroma. He has booked me in for a barium x-ray as he could not inspect my windpipe. I will know the results of this when I go back to see him in May. I must admit my symptoms have subsided a lot. I read that the numbness in my cheek could of been anxiety. So I wait now for xray results. I feel far from relaxed, but there is little more I can do.
oscar