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trese Offline OP
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Ok so how do I go about getting the biopsy of the node done, every doctor I got to says its probably due to a viral infection and it shall pass... eshwar were there any other symptoms for your dad?? I've to so many doctors I just feel like giving up..I have this pain that's coming and going like a pin and its also in the head but its a bad pain

Btw. I'm a female 28 smokers for one year quit two weeks ago and still have sypmtoms

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Not sure this will be helpful to you but I had ear pain and an enlarged cancerous lymph node from an oral lesion on my tongue. The ear pain, however, was determined to be TMJ, from me clenching my jaw so many times from the stress. You can have ear pain, and it be related to oral cancer, depending on the location of the primary lesion. It was not only me that can to the conclusion about the TMJ (temporolmandibular joint)causing the pain. The dental oral cancer specialist at MD Anderson helped isolate it for me. Once I realized that it was a result of stress, I was able to relax my jaw enough that the pain left me before I had surgery to remove the cancer.

On the other hand I assume your lymph node is not very large; mine wasn't either and it was metastatic cancer. You'll have to find an ENT to do arrange an ultrasound and fine needle aspiration. Sounds like the ones you have availed yourself of are not convinced it is likely. You may have said, but how long have you had the swollen lymph node? Where exactly is it located? Those answers will figure into what an ENT thinks about it. I guess you'll have to either make an appointment to see an ENT you've already seen, and ask about the possibility of having a FNA, which is a biopsy of the fluid inside or find another ENT who will. Perhaps you can call first and talk to the PA or nurse about it.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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trese Offline OP
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Anne o

Thanks so much for the great information, I was just about to post here again....but to answer u I have had this swollen lymph node for around 3 weeks now the white tongue alittle over 6 weeks closer to 7weeks...the pain in ear just started this Wednesday and I've started antibiotics this Thursday because my regular doctor doesn't know what's wrong but he believes the antibiotics will help reduce the pain... I noticed today I got a white patch in roof of mouth( maybe from antibiotics??)
I've been been told I have TMJ a year ago but never had ear pain I also have bad gum diease for over 2 years now..all of this and I'm only 28...
Right now I'm in so much pain when I move my head I don't know what else to do..this is honestly the worse I've felt since all my symptoms begun...

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trese Offline OP
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I forgot to mention the lymph node is in my neck on the left side in the lower part of the neck near the muscule..

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Trese,

I've been reading your posts. If I were in your shoes and felt something was wrong and no help from the Dr.'s. I would call the nearest Cancer Center and talk to someone there. It wouldn't hurt to talk to them on the phone and maybe they can lead you in the right direction. That would be my plan, first thing tomorrow morning.

Take care,
Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Get a needle biopsy done on the lymph node!


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Hi Trese! Please relax. I know you are upset and afraid that you have cancer. When that scary thought creeps into your mind, then the "what if's" can be pretty hard to shake. I am sorry you have lost your parents to cancer! It must have been a very difficult time for you. That is also what makes this even scarier for you. At this time, it has not been proven that oral cancer is hereditary.

To me it sounds like you have thrush. Plain yogurt will help with thrush. I would give it a try. Another idea is to go see your family doctor for a good physical. Maybe they could refer you to another ENT, dentist or even an oral surgeon. To me it sounds like you have some sort of infection causing the enlarged lymph node. I agree with Kelly, that a needle biopsy can be done with the lymph node. If you havent been on antibiotics, then that might be something that would clear up the white tongue. You are right, a white tongue is not normal but it can happen. Keep up the good work with not smoking! Thats a hard habit to break. You do not need those irritants making this even worse for you.

I have also sent you a PM (private message). Small world, we live in the same area!

Please do your best to calm down and relax. It isnt helping you at all to be upset about this. I know how silly it sounds to stay calm when you are afraid you have cancer. I have been where you are but unfortunately, I did have cancer. I sincerely hope you do not!!! Of course we are not doctors here and its over the internet where nobody could diagnose you. We are however, very experienced with oral cancer. We learned thru going thru it as patients and caregivers.

Best wishes with getting to the bottom of this!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Hi, Trese.
I work as a medical professional, but I am not a physician. It sounds to me that after seeing 8 different doctors, none of them have been on the same page. In other words, when you have that many practitioners working out of different facilities, the lack of communication can be a huge problem. This is YOUR body we're talking about. Nothing should be dismissed until it is further investigated. As others have said, the swollen lymph node and ear pain are the most concerning symptoms. Unfortunately, a diagnosis cannot be made without analyzing a tissue sample. I agree that a lymph node biopsy seems like a reasonable start, but again, I am not a doctor. As far as the tongue changes are concerned, I would think at least one of the doctors you have seen by now has cultured your tounge. If so, what were the results? I developed a white, hairy tongue after my partial glossectomy. It is common in those who are on soft/liquid diets for extended periods of time and the cells on the surface of the tongue proliferate due to lack of roughage, which normally kind of "exfoliates" the tongue. I never had it before and I have never been a smoker or a drinker. When I was in the hospital recovering from my surgery, the doctors thought I had a wound infection at my neck dissection site, so they had an infectious disease specialist come in to evaluate me. She asked to look inside my mouth and saw that I had a white tongue and immediately said that I had thrush. I replied, no it's not thrush, I just have been drinking vanilla ensure and it was hard to clear my secretions, so my tongue was white. So, my point is in MANY situations you cannot just "look" at something and make a diagnosis. To me that is not thorough and it's dismissive on the practitioner's part. It is extremely important that the doctor get a FULL, accurate history from you. Things that you may not consider relevant in your medical history may be key to the doctor. The history will help lead the doctor to the next reasonable step in the diagnostic process.

I would suggest the following steps to get yourself organized for a second opinion from an ENT. Of course, this can all be done in the days leading up the your appointment. Don't wait until you have all of the records before you make an appointment. Time is prescious when it comes to making an early diagnosis if it is oral cancer. You should not have to wait more than a week or two for a consultation. If you can't get in sooner, see if your PCP can call and influence them to squeeze you in sooner. If that doesn't work, go somewhere else.

Get ALL of your medical records from each practitioner that you saw. Tell them you want every test report, lab work, consultation notes, progress notes/follow up notes. Often if you ask for copies of your medical records, you will only get office notes. You have a legal right to all of the information as long as you sign a medical release form. You might need to give them a week or so to provide these materials and there may be a charge for them. It depends on the facility. They really shouldn't be charging you for your records if you are seeking another opinion. BTW, any practitioner that balks at your getting a second or third opinion should be red-flagged in your book. A good medical professional should enocourage and welcome the notion of you seeking another opinion.

Once you have all of your records, try to organize them as best you can both chronologically and by practitioner. Ask the office if they would like you to forward your records ahead of time so they can be reviewed. As always, be sure to keep copies for yourself.

Next and most importantly, get yourself a notebook and write down every single question and concern that you have. When you see the doctor, things tend to just fly right out of your head and you forget things that are important that you wanted to ask. I advise all of my patients to do this when visiting a doctor. Doctors are faced with the challenge of seeing patients every 5-10 minutes, so some are rushing out the door before you can get your questions in. If you go in armed with questions, the doctor is much less likely to leave until they have all been answered. Just tell the doctor up front that you have some questions/concerns written down and anything that doesn't come up during his interview/exam, you'd like to have a chance to ask after he/she is finished. My advice is to prioritize them in case you can't get through all of them in one visit, but in most cases, you should be able to get through them all or a nurse/resident/fellow can answer them for you as well.

I wish you the best of luck in this scary process. Of course, all of us here hope that it is nothing serious and that you can get an accurate diagnosis and effective, appropriate treatment. Please keep us posted and feel free to ask any and all questions you may have. We may not have all the answers, but all of us have been through so much and can share our experience, strength, and hope.

With care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Hi Trese,

My dad also had loss of appetite but it could be also due to his lesion on his tongue. Otherwise, he was pretty asymptomatic.

While you have had opinion from others, I am sharing my sister-in-law's experience who is old as you (does not smoke). She also had a swollen painful lymph-node 2 years back and she had several blood work and finally the doctor decided to go for FNAC (twice, Ultrasound guided second time), which also came out inconclusive. She also had pain while moving head. She had to go for an excisional biopsy and that came out negative (for cancer). The biopsy was a quick procedure and she did had a discomfort for few weeks but it gave her peace of mind. Doctor also identified the cause (rare disease in this part of world) and was able to treat her and she was back to normal in few weeks.

As with her, you may also come out clear.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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