I had a lump in the back of my mouth, upper right side behind molar along cheek. They performed a biopsy last Friday and said to schedule an appointment for 2 weeks. They just called today and told me to call and move up my appointment to Tuesday instead of next Friday. Why would they do this? It just made my nerves about a million times worse. I am 27, a smoker except during pregnancies, have a 4 year old, 9 year old, and I am currently 8 weeks pregnant. I feel like they should be able to tell you something over the phone, that way we can prepared to listen at the follow up if it's bad.

Not much you can do till Tuesday. Try and relax if possible. Keep busy and preoccupied. They don't usually give any news, good or bad, on the phone. It may be nothing. I hope all goes well Tuesday.

HI,

Welcome to OCF. There are many folks who have experienced your concerns. It could be something as benign as the doctor received an invitation to play on an exclusive golf course that day so is rescheduling appointments to clear his calendar.

The golden rule around here is it is NOT cancer until so stated in a the test results report.

I know next Tuesday can seem like an eternity when being so anxious but do your very best to take the position above - it is NOT cancer unless so STATED.

best to you, don

Many physicians will not give results over the phone. Its just their policy so dont let that make you nervous. It usually take about a week for the results to come in so Im surprised they initially wanted you to wait 2 weeks to return.

Speaking as a former smoker who lost her jaw to OC, PLEASE (no matter what the results of the biopsy are) quit smoking permanently. Its NOT worth the risk to you and your family!

Best wishes!

Thank you guys, and yes I know I have to quit smoking, luckily it's something I actually want to do. I called to schedule my new appointment and of course asked if I could have some sort of info over the phone and of course the doctor said no, he Needs me to come in. I think the issue is I have panic and anxiety disorder and this waiting is just making me nuts, and I can't be on meds anymore due to pregnancy. OY, it's all just viscous cycle. I appreciate your thoughts, and will just wait, but I really would rather get a phone call Tuesday, I really don't like the idea of having news if bad handed to me in person in a doctors office.

Hi Angelsrock,

As has been mentioned, it's NOT cancer until they say it's cancer! I know it's easier said than done but try to relax and stay away from Dr.Google! Could be any number of reasons they changed the appointment.

Now, regardless of the result... smoking! C'mon now! You have to stop! I was a smoker (cigarettes, pipe and cigar) for 35 years. I quit last year prior to my diagnosis. Do I miss it? Absolutely! There are times even now where I crave a good stogie but the thought of treatment and what I went through quickly quells the urge.

I used the electronic cigarette to quit. You can step down in the amount of nicotine until you reach zero. It's a vapor that delivers the nicotine and it "feels" like you're smoking. Even my docs said it was better than inhaling the 4000 chemicals that are in tobacco smoke. For your health and your children, please quit!

Positive thoughts and prayers,

"T"

Hi there - is there any way you can move it to tomorrow? This would eliminate the stress. I don't want to freak you out, they must want to discuss the results with you. It isn't cancer until they say it is, this is very true and it could be something innocuous or inconclusive that may require surgery to remove, but I would try to get in before Tuesday - hugs.

Could be due to the doctors scheduling, and nothing more, and has happened to me often, but luckily not when I had a biopsy. If you had the biopsy in the hospital, I usually go to the pathologist office, Otolaryngology Dept or medical records to get my own copy of the pathology, surgery or scan report, and read it myself since I dont like waiting, but usually see the Dr. that day or soon after. My private oncologist is more difficult, and can't get a copy from until after I've seen her nor get it over the phone. Good luck.

If you are that nervous about it, call tomorrow and if not call again on Monday to ask if they have any cancelled appointments they could squeeze you into. If not then you will know the next day, Tuesday.

Waiting is the worst!

Good luck!!!

Angel -Scheduling could be all it is with getting appointments (as Paul mentioned). We got my son's first appointment with the ENT moved up from 2 weeks away to the next business day. They can do that. They can move other appointments around. As for "in-office" appointments, the advantage there is that whatever the results are, there are human beings there to help with some positive suggestions as to how to proceed and what comes next. If you bring someone with you, and it's positive news, you can celebrate together and if it's not so positive, you have hugs to go along with the plans for what comes next. In my son's case, when we got the news, my daughter was there, and the ENT plus three interns and something that helped me so much was a comment made by the female intern just as everyone was leaving. I think she saw how worried I was and assured me that Dr. C was very aggressive in his treatment and I knew by the look on her face and the tone of her voice that my son had a very good chance of being ok. You don't get that over the phone. They probably just want to tell you to quit smoking. And you can do that!

Ok, I posted a reply but don't see it? Lol So I will try again. Thank you guys so much! This is such a lovely place for help and support and you are all wonderfully strong awesome people. I will try what was suggested with the e-cig just to help with the final stretch of quitting, I have cut back but have not conquered quitting completely. My story, I found the lump around Christmas time 2012, just happened to feel it with my tongue, 2 months time it didn't go away. I went to a dentist because I thought I should get it checked, he dismissed it because he couldn't see it... It's in a very awkward place. 3 months more went by and it's still there, so I went to an ENT ( I don't have insurance) he wanted an MRI done on it but I couldn't afford it. So I had to get on carelink which is the Health System through the University in San Antonio they go off of income. I had to wait 2 weeks, then get referred to ENT which took another 2 weeks lol Then he referred me to the oral surgeon, he insisted I needed a biopsy because it was hard, and bigger underneath the surface, and because of its location. After biopsy everything hurt, my throaght, my right ear, my right jaw... It was like it connected with som many nerves. So anyways thank you for the support on the wait, I am going to try my best to calm down, and take some advice on moving appointment, if not I will at least know on Tuesday instead of Friday! I am extra nervous because I am pregnant and I may be crazy but I think hormones can do so many things to a women's body, may even speed up things. So silently trying to except something bad but hoping for the best. Thanks!

Well as you can see from my previous post I was trying to stay positive, that is until they called me again this morning. Now I am just down right freaking out, I am in panic attack heaven. They wouldn't tell me what it was of course, but they told me I needed to schedule a CT scan for before my appointment on Tuesday. They said they needed more images? This can not be a good thing right?

Hi,

From what you wrote my understanding is the oral surgeon did the biopsy. Is the next appointment is with the oral surgeon or an ENT? Who is "they"?

Typically, CT scans are in the domain of the ENT and not the oral surgeon. The ENT would order a CT. Not to freak you out but a CT scan is generally not ordered if the biopsy is negative.

Please stay calm as there are still many facts unknown and things are moving pretty fast. don

The oral surgeon ordered the CT scan, and wanted me to have the scan before I come in and discuss the biopsy.

ok. Get the scan and be pleased and positive that you have solid medical professionals working so quickly. Next few days will zip by, just try not to dwell on it as nothing is firm yet.

You will want to save and use your energy later IF you receive a cancer diagnosis.

best, don

Yes get the scan. They may have detected something, it could even be a dysphasia of some sort - and maybe they want to know how deep it is. ideally I would want to get an ENT involved at this point as an oral surgeon can only take you so far. I could very well be at whatever it is has to be removed so an ENT is the person who should do that. Try to relax. I know its hard but before Tuesday nothing will be done so freaking out will not help matters. Hugs.. Vent if you have to we're here

Ok getting the scan, just a little irritated that they can't tell me exactly why I need it before hand since there are risks to a fetus, minimal but childhood cancer would break my heart knowing I caused it. I am much calmer now, got some anxiety meds and decided my huge anxiety was worse for the baby then the meds at this point in time. Thanks for the support, I can't go through an ENT unless they tell me too due to my limited option of health care. If it is cancer I will need to figure out a way to go somewhere else but no insurance sure puts a damper on things lol Be back Tuesday to let ya know!

I actually meant dysplasia not what came off my ipad... Which is abnormal but not cancerous tissue. However the scan says to me they are concerned and want to be thorough. Clearly there is something they are seeing so they likely want to know the depth and involvement. It doesn't mean cancer - but my assumption is they want a better look at it. And a scan will give them a thorough picture. Hugs. And good luck!

Well it is cancer, a cancer called Mucoepidermoid carcinoma. I have know idea what that really means and I have no idea how to go about dealing with this.

I'm sorry to hear, and we were all hoping it wasn't. MEC, which is rare, mainly effects the salivary glands, mostly in women. Surgery is the mainstay, and can include radiation, I believe. There is a whole page on this at the opening page that I can't link it right now with my iPad, but that would be a good start. I'm sure your doctors will tell you more, and depds on the type grade.

http://oralcancerfoundation.org/facts/rare/mc/

Thank you, the doctors said they want another scan done since the tech didn't do the imaging right they want 1ml slices and he did 5 ml slices. So that is first on my list, then they said surgery after I am out of my third trimester. Should I just take this route or seek out a CCC? I did try to call a CCC but they weren't helpful or I am just not asking the right questions. I meant first trimester! Geez my mind is going lol

Dang! Sorry to hear the news. A 2nd opinion is definitely prudent, especially with a rare cancer. Once you have the scan done, ask for your medical records and tests results.

When I contacted Johns Hopkins, they were beyond helpful, even helping to acquire some of my test results. After my initial contact I was put in contact directly with the head of the Sidney Kimmel Cancer Center and she arranged everything. You have time. Contact them or another CCC and explain your situation/diagnosis and that you want a 2nd opinion. Information and knowledge of your cancer is your best ally.

Here is a list of cancer hospital ratings
http://health.usnews.com/best-hospitals/rankings/cancer

Positive thoughts and prayers

"T"

A 2nd opinion is always good, and down the line won't regret you didn't like some do. You need to have faith and trust in your doctor(s), hopefully with your type cancer experience, whoever you choose, be it the ones you are seeing or a new one, don't 2nd guess yourself after that. A high volume CCC has many advantages, including survival, over one that is not. The NCCN, NCI, have listings of their approved CCC, and U.S. News Report has a yeary listing of the top hospitals in 16 specialties, including Oncology, and ENT, but these listings are not all inclusive, and many hospitals, in fact any can call themselves a CCC or CC, which name is not trademarked, can be a CCC with a team approach, with multidisplinsr doctors, and support staff. Good luck.

Hi how far into your pregnancy are you? I'm sorry for the news - I would go the route of the CCC- you are pregnant which complicates things.do a little research and hopefully you'll have a cleared picture, there are some here with MEC hopefully they will be along with an answer. Hugs. We're here.

Thanks I am 9 weeks and fixed my error up there, have to wait till first trimester is over. I will look into the CCC in Houston, it's about 2 1/2 hous away.

Im very sorry to hear of your cancer diagnosis!!! If you must try to look on the bright side, from what I understand, Mucoepidermoid carcinoma is slower moving than the type I had (SCC). I actually have a friend who lives in San Antonio who had the same type of OC. She would be a great person to help you with info as she is local to you.

A Comprehensive Cancer Center would be the very best place to go as soon as you can.

Please give up the tobacco usage right away. Im sure you are in shock right now but it will only make things worse for you by continuing to smoke.

PS.... I have sent you a message with info to help you add a signature. Click on the small flashing envelope next to the "My Stuff" tab (towards the top in the center of the screen).

I send you a private message....

I don't know if they still do this but when I was diagnosed 10 years ago MD Anderson in Houston allowed doctor-to-doctor review as a second opinion. I was setting everything up with the Head and Neck department and the head of the department called me to tell me he sent people in my area to my doctor in Dallas for second opinions and he concurred 100% with my treatment plan. It was reassuring and my doctor was fine with me having done that. He even thanked me for taking the extra step for my comfort and confidence. He even said if a doctor ever gets mad at a patient for doing that...run fast to another' doctor.

Md Anderson is a top CCC if you can get in there I would - after surgery if they feel more treatment is required they should have a hope lodge on site or nearby where you can stay week days to cutdown on the commute.. hugs and best of luck.