I'm on an emotional roller coaster. PCP referred me to ENT for what he diagnosed as tonsillitis, (which were removed when I was 8!). ENT said "I don't like the way that looks". I said "I don't like the way it feels" - it hurt like hell! Biopsy done in ENT's office and sent to a local pathologist came back as suspicous but inconclusive. It has been sent to Stanford for further analysis - he said rather than take another biopsy sample. I have also had an MRI. I got the report back day before yesterday and it states "A 1.5 x 2.1 cm area of T2 lengthening and enhancement is present now in the right mycosal space and the mid oropharynx consistent with a squamous cell neoplasm." ENT says nothing is definite until confirmed by the biopsy. And, it seems like I won't get those results until after the New Year holiday. I don't know, but it sounds like cancer to me. I just want to know.

BTW, I'm 53, single female, no children and no real family or support system here. So, while I know I'm a pretty tough cookie, this definitely has me spooked.

I'm not a Doc, and your ENT is right that it isn't so until the biopsy results say so, but I take the MRI results to be a strong indicator of cancer.

If that becomes so, I highly recommend that you get immediately to one of the Cancer Centers for a full set of recommendations from a team of cancer specialists who deal with hundreds of oral cancers each year, even if just for a second opinion as to your treatment. If you only take one thing away from this Forum, getting to a Cancer Center is it!

Instead of just your ENT deciding what's best, you get a Tumor Board consisting of expert radiation, surgery, chemo and dental folks coming up with a plan to both effectively deal with the problem (surgery and/or radiation and/or chemo), but also to minimize the after-affects that may mess up your future life.

Here's the list from this site:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Then do a lot! of reading from this site and the Forum, because in the long run, the person who needs to be sheparding your case is YOU and the more you know beforehand, the better you can guide the results.

Good luck with all this and don't let it get to you -- There's plenty of help and support right here on this site,

Pete

PS: See this thread for some definitions of terms used on this Forum:

http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/1/t/001109.html

PPS: Be sure to have someone with you whenever you are seeing the ENT or anyone else involved with your treatment -- I can tell you from experience that you will not be likely to hear everything they will be telling you...

Here's more, altho a bit more technical after the first few pages:

http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Here's an excerpt from the above as to medical team and support members:

MULTIDISCIPLINARY TEAM
The management of patients with head and neck cancers is complex. All
patients need access to the full range of specialists and support services
for optimal
treatment and follow-up.
with
expertise in the management of patients with head and neck cancer


Head and neck surgery
Radiation oncology
Medical oncology
Plastic and reconstructive surgery
Specialized nursing care
Dentistry/prosthodontics
Physical medicine and
rehabilitation
Speech and swallowing therapy
Clinical Social work
Nutrition support
Pathology
Diagnostic radiology
Adjunctive services
Neurosurgery
Ophthalmology
Psychiatry
Addiction Services

Follow-up should be performed by a physician with expertise in the management and
prevention of treatment sequelae. It should include a comprehensive head and neck
exam. The management of head and neck cancer patients may involve the following:

Pain and symptom management
Nutritional support
Enteral feeding
Dental care for RT effects
 Oral supplements
Xerostomia management
Smoking cessation
Tracheotomy care
Social work and Case management
Supportive Care

Pete

Nice job Pete of getting all the basic information out there!

http://www.oralcancerfoundation.org/resources/index.htm this link is all the resources in addition to the sections that Pete mentions in his posts, and there is one called NCI designated cancer centers, which certainly adds to their credibility, and an independent list updated each year from US News and World Reports called "NORC - best hospitals" which lists the top fifty cancer centers in the US from 1-50. Like Pete has said, a "team" is way better than a single individual in deciding what's what.

Another hint, read through the main site, the forums, etc, then take a legal pad and make a list of questions you want to ask your Doc when you see him. I actually posted the list on my fridge so I could scribble them down as I thought of them. You can always revise it later, but it serves as a battle plan!


Andrea

Thank you all for your quick responses. I have been reading the oft repeated mantras of "second opinion" and "get thee to a Cancer Center". I guess this qualifies as a compelling enough reason to get me to go back to Los Angeles, (AKA the world's largest open-air asylum), and I didn't think there was one.

Once I get the biopsy confirmation, what are the next steps, what kind of timetable should I expect and how fast till the roller coaster takes off?

Sorry to hear what you are going through. Waiting for biopsy results is very diffucult.

Seems like a long time to get the biopsy results back. Assuming that the latest that the biopsy was forwarded to Stanford was on Friday, unless everyone in the department is off this week, the results should be available in a day or two. They just have to read the slides.

I would call your ENT and ask him to call them and get the results faxed to him. You've got nothing to lose by asking. I had a biopsy on a Friday and got the results faxed to my office before dinner the following Tuesday.

Good luck.

Jerry

Get the bio results and hear what the ENT recommends. Then get as many second opinions as you need before you are comfortable. I saw 4 cancer docs before I made my Tx decision and they were all different. I ended up at a CCC and I'm glad I didn't go with the first coup[le of recommendations. Your first may be the best one but you can't know that until you compare.

Good luck and let us know what the results are. Also I would start to make appointments as soon as possible. Don't wait until the results are back. You can always cancel.

Since my last post, I have been really working on being patient (as opposed to being a patient), about getting my biopsy results. I had made a conscious decision and somewhat futile attempt to put it out of my mind and try to enjoy the holidays. Well, I still don't know anything and my emotions are like a racquet ball bouncing off all the walls.

The report du jour is that my biopsy is being reviewed by a panel of pathologist at Stanford. Now, I don't know if this is after ONE of their pathologist looked at it and needed help or what the deal is. It was also confirmed to me that this "panel" is also looking at my MRI as part of their consideration. So far, nobody has told me whether or not I have cancer! Today is three weeks since my initial visit to the ENT and I still don't know anything.

In the last couple of weeks, I have spent a good deal of time on this forum and am continuing to learn as much as I can. Given what I've learned so far, I feel reasonably sure that I do have cancer. Having said that, I also feel that I am much better informed, have some understanding of what I may be in for, a pretty long list of questions and I'm ready for the fight - if it comes to that. I just want to know and then, I want to start getting well!

Thanks for the opportunity to vent. And, I kept it clean! ;-)

Dear JB....Of COURSE you are going nuts waiting for the report! At least you have the comfort of knowing that there is a team of the best minds going over your results and taking everything into consideration. Please keep us posted. I HOPE that you have worried for nothing! That would be good news indeed.

Okay, I finally got some kind of answer. ENT says that a panel of five Stanford pathologists could not rule out cancer but did agree that what was biopsied is a "Squamoproliferative Lesion". Anyone know what that means?

In addition to this little problem, I also have a brachial cleft cyst that was diagnosed 3 years ago. I was to have had it removed then, but the Dr. (a differnt one) was unable to get me intubated so he cancelled that surgery. Since that time, the swelling had gone down and hadn't given me any trouble. With all this other throat nonsense going on, it has since swelled up to its previous size and has been a little uncomfortable - I wouldn't say painful.

So, my ENT now wants to schedule surgery on Monday to remove the brachial cleft cyst as well as the "lesion/tumor" in my throat and send for further analysis.

I guess the good news here is that it is still not definitively cancer. Am I being too optimistic to consider that if it does yet turn out to be so, that it would have to be at a very early stage?

Jellybean,

My husband just finished radiation at Stanford. Sounds like we are in close proximity. All went well. This site was the biggest help for support. Keep us updated and if you need a friend or two in this area let us know.

I think that's a good question to ask your doctor. I'm not sure any of us here have the medical knowledge--or enough knowledge about the results of all your tests-- to answer that. Hang in there! waiting to find out is one of the worst parts and in your case that seems to be being extended, which has to be very hard on you. Try to focus on just preparing yourself for this surgery you have coming up by telling yourself it will go well and you will heal quickly.

Nelie