My Mom, who has never smoked and hardly drinks more than a little red wine now and then, has a splotch. Lacking a better description, it is a pinkish-whiteish flat mark on the soft palate of the left side of her mouth. About 8mm x 12mm

It is not painful. It doesn't seem to be growing. Here's the problem. She's had it for MONTHS now!

She's been to her regular Dentist who did the not so perfectly diagnostic swish thing. She went to an ENT who said he was "nearly sure" it wasn't cancer and scheduled a follow-up for DECEMBER !!

Now, she is not sleeping. Not eating. Not happy. She is miserable and crippled by fear.

I am sure seeing her son nearly eat-it with Stage IV SCC doesn't help keep it in perspective, and I am honestly starting to worry.

Maybe this ENT is wrong..? it could happen.

She's my best friend in my life. She is 64 and not as young as she used to be. (Otherwise very healthy though, doesn't abuse herself, she is normal weight, etc)

She needs to get a 2nd opinion at the least. I am over 400 miles away.

I don't want her to waste any more time figuring out who to see. Where to go.

I know most of the very knowledgeable cancer ENTs are not interested in diagnosing. Seems to me they prefer to get patients AFTER they have been definitely diagnosed by their GP, etc.

The good news is, unlike me, she lives in civilization. South Orange County (Brian?) to be more precise. Ok, ok, Laguna Niguel. You forced it out of me.

Since she is in So Cal there must be someone she can go to rather than picking up the Yellow Pages (Does ANYONE really use those phone books anymore?)

Any suggestions would be greatefully appreciated!

Your are a very good son, she is lucky to have you looking out for her. I would try an oral surgeon to see if a biopsy is needed. IF and I do say IF it is cancer then the biospy is the way to know for sure. Not all spots are cancer. Some ENTs or even dentists do biopsies too, but seems oral surgeons do them more often. Wishing her well with the outcome.

a biopsy is the only way to prove if it is or isn't cancer...your mom needs one

Thanks for the biopsy suggestions...I agree of course that biopsy is the gold standard in dx.

However, the ENT she saw last week said: "I wouldn't know what to biopsy...there's nothing to cut."

Not sure what that means, I wasn't there personally to push the issue, but it seems to me a "punch" biopsy would be the way to go.

He can most certainly collect a small sample of the "area" that way.

Thank you again for the support!

Michael,
What makes you state:

'I know most of the very knowledgeable cancer ENTs are not interested in diagnosing. Seems to me they prefer to get patients AFTER they have been definitely diagnosed by their GP, etc.'

I don't think that's true. Rather than running around finding another doctor, why don't you send her to one of the many CCC center where she lives and get an answer from someone who deals with this cancer everyday. Those of us who start out at one of those are not usually running around for second and third opinions, admittedly, you're were exception to that rule. I actually can't believe you didn't send here to a CCC in the first place.

Take care,
Eileen

Take care,
Eileen

Eileen. Of course you are right.

Unfortunately, my Mom is a bit stubborn like many (like Mom like Son

Anyway, when it was just a white splotch and had only been observed for a couple weeks, there was no cause for alarm.

She had some new braces (Invisaline?) around September 6, and they routinely cause sores.

The "sore" (which actually isn't sore), was first noticed by my Mom in the mirror a couple days after that.

So, to be accurate, it has been about 6 or 7 weeks now and she has been back to the DDS a couple times, and this one ENT twice.

I called 2 SoCal CCC's intake dept's and both told me she would have to have a dx before making an appt.

That's where I get that perspective, but of course it could be way off.

Also, 2nd and 3rd opinions are not a bad idea when the standard of care for one's case gives 2 completely different lines of suggested treatment and the decision is so crucial.

So, if she didn't get a 2nd or 3rd opinion at this point she'd be just worrying and waiting for a December followup.

Maybe you can take her to a Dentist that can do a brush biopsy before seeing the specialist in December.

hey again Ray...

I spoke to her DDS and she said she did the ViziLite (sp?) test already.

I seem to recall Bryan thinking these tests (at least a couple years ago), were not very conclusive.

The dentist said she didn't want to do any cutting since it looked like just a skin discoloration to her.

I am working with getting her an appt at UCLA now, so I'll post when we know more. THANKS AGAIN!

I had white splotches biopsied for fifteen years before one spot grew a tumor (which was clearly different from the white spots; overlapped the skin and had a tiny vascular system running through it) -- Given liability, I am surprised that docs aren't clamoring to biopsy it -- They make money and everyone knows for sure.

Vizilite is not like the Velscope. It is a avery weak science, and the test (IMHO) isn't worth the cost of the testing components. The company is almost our of business, after nearly being de listed from the stock exchange. I wouldn't trust anything in my mouth to the outcome of this testing idea.

I wholeheartedly agree with Brian,

A biopsy has been and probably will remain, the gold standard for diagnosis, for some time into the future.

We switched to the Velscope from ViziLite over a year and a half ago, but will not make a diagnosis without a biopsy.

Jerry

Ok, this is kind of surreal...

My sister has had a "lump" near her ear for a couple weeks that her Dr put her on antibiotics for.

Turns out she also has at least one nearby node that shows to be swollen, but not tender, and no pain, fevers, etc.

After much prodding, her Dr has finally agreed to do a biopsy, and she is scheduled for Tuesday. It will be a CT guided FNA.

Her name is Heather and she is clearly freaking out right now.

screen name: hwebster

Being a smoker only adds to the regret and anxiety I think.

Even though it's not technically Oral and of course not yet diagnosed as cancer, any support, advice, or encouragement the board can spare would be deeply appreciated.

PS: My mom has biopsy at UCI on Friday, Halloween.

UGH!

Hi All:

The "lump" started a week ago, Wednesday. It was a hard spot that swelled right next to that funny little nub on your ear near your face. If you go straight down the glands are hard and swollen and the whole thing is swollen and sticking out.

None of it hurts. I have already taken antibiotics since the doc was hoping it was in infection (No Fever or other symptoms).

So, I'm going in on Tuesday for the FNA in the CT machine and don't really know what to expect. What this even is and hoping its going to be OK.

Any input, advice, or knowledge is greatly appreciated!!!

Thanks for being such a great support to my brother all of these years and the advice for mama.

THanks,

hwebster,
I agree with Jerry with regard to your mom a biopsy is the gold standard and will definatly diagnose the lesion.
As for your situation; FYI "that funny little nub on your ear near your face" is anatomically known as the "tragus" fancy name for a nub but hey it needs its credit. A lump and/or swelling in front of this area could be the result of many things. There is a major vascular bundle (artery, vein, nerve and lymphatics) under the skin in this area. Swelling and hard or swollen nodes could be the result of many different inflammations and/or infections involving your scalp (an infected hair follicle or ingrown hair), ear (infected piercing), ear (outer or inner ear infection), eye (conjunctivitis or pink eye), sinus (cold or sinus infection), and skin (pimple)to name a few. You need to see an ENT.
The CT should allow your Docs to narrow down the list and zero in on a diagnosis.
I know that the mental game is a rough one but, as we say here it's not cancer until they say it's cancer and stop smoking already.
My thoughts and prayers are with you and your mother.
I hope good news comes to you both.
If I can answer any questions please contact me.
Cheers,
Mike

Michael:

Glad to hear your mother is getting the biopsy. That will tell you for sure and hopefully it will turn out to be nothing to worry about. Its so hard waiting to get tested and then waiting for the results to come back. Think positive as much as you can, its not cancer til the biopsy says so.

Sorry to hear about your sister. Im sure it is a very scary time for her right now. I will say prayers for both your sister and your mom.

As a former smoker, I know how in times of great stress its nearly impossible to think about quitting. I threw my cigarettes out the window while I was driving to have my port and PEG tube placed. My thinking.....its the cigs or its gonna be me....Im not going to let cancer get the best of me when I do have control over if I choose to smoke or not. I must do surgeries, radiation and chemo to save my life and Im not about to make things worse and harder on myself by continuing to smoke. It can be done when you set your mind to it.

Best of luck with all the upcoming tests.

if mom is still highly stressed and not able to sleep her doctor can give her meds to calm her. when i was awaiting my surgery i went thru a few days of high stress and could not sleep or think because i could not shut the brain off. i asked doc for meds that would not make me feel drugged but would calm this down and she gave me some meds that helped so much and i could not even tell that i had taken them other than not crying non stop and i could sleep ... so dont let her stress so bad endlessly tell her to talk to doc and calm down - our fear is normal but we need to get help with it if we cannot shut it down on our own. there is just no need to suffer endlessly ...

i will say a prayer for your mom and sis and we will trust that both reports will be good ones! please keep us posted.

the waiting is always worse than the knowing. i pray the outcome will not be as feared and chances are it is not... but i am sure it is scary for them.

i remember when my brother was told he had to have his colon removed (colon cancer runs strong in our family - my grandma, dad and all his siblings have had colon cancer and now my brother had to have his removed... ) anyways when he had to have surgery we all rushed in for colonoscopies, scared because everyone had similar symptoms (touchy gutt with many foods) but everyone else was okay ... those days of waiting and wondering were tough on everyone.... wondering who would be next ...

i pray the report for your mom and sis will be as good as the rest of us kids ... no sign of any trouble. i will watch for your report.

Umm, what's an FNA? F'iNg Assessment?

I did do a search of the forum before I asked...

FNA usually stands for Fine Needle Aspiration.
I believe, and I may be incorrect here, but fine needle aspiration assessments can be more accurately guided to abnormal appearing areas with the aid of a concurrent CT scan.
I checked medline and all I could come up with was the same results as a google search...apparently it has earned some attention with respect to the adrenal glands? The relevance of this to OC...who knows?
Maybe Brian, Gary or another knowledgeable soul can shed some light on this.
Pete, I have no idea whatsoever what an "F'iNg Asseeement" is but, I'm certain that it isn't very polite. When I googled it my keyboard hit me! LoL.

Cheers,
Mike

FNA = Fine Needle Aspiration. As sample is taken of the suspect area by a needle, not unlike one used for blood collection.

For those in the Nor Cal area, there is a world-class "Walk-In FNA Clinic" on Divisidero St & Sutter, at UCSF Cancer Center.

Some of the best FNA people train here, and they take patients on a walk-in (no appt) necessary basis.

They are real pros and did mine in 2 minutes. The other 3 ENTs I had been to over the prior 6 weeks kept missing the nodes and in-fact one hit a vessel and I ended in the ER.

In any case, no one likes to process of discovering one has cancer, but if you need one, an FNA is the easier of the types of biopsies out there, but not applicable for all cases I presume.

Incidentally, there have been some studies done on the "spreading" of cancer cells by FNA's and other biopsy efforts. Might be interesting reading.

The final FNA I had was without any anesthesia, and actually was the best. Others had shot me with anesthetic, which frankly hurt more than the extraction and was an unnecessary step which added risk of infection, spreading the cells (if this is plausible), etc

IMHO, I think, my 2nd FNA, the one where he hit a vein, actually spread the cancer to an adjacent node.

The Dr was shaking doing the procedures and took 5 stabs at my neck -- UUgh! It was hell... This was after two shots of anesthetic.

The last one was like something out of movie, blood, and a PULSATING stab wound on my neck that was visible in a mirror.

You could actually SEE my heart beat in the bulb it created under the skin.

Ok, sorry to be so gross, and I'm not trying to freak anyone out about having the procedure.

Honestly, in general these go off without a hitch and should NOT be avoided simply because of the fear of something going wrong or of a cancer diagnosis.

The sooner you know, the sooner you can start to deal with it.

Cancer cells have tons of mechanisms of shedding and spreading on their own. The risk from a FNB spreading cancer is minimal at best, and some of what is on the internet is grossly over-exaggerated. Given all this, late diagnosis is way worse than the remote chance that anything that might happen as the result of getting a FNB.