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New Member - Seeking Shared experiences - Many doctors, no diagnosis

Posts: 4
Joined: Jan 2019

Hi Everyone,


Edit: I am interested in any similar experience.  I am not seeking medical advice   Just wondering if anyone else has a story to tell that they can share.   



I am hoping you can help. I have had a left rear tongue pain and sore throat for 8 weeks.  I have seen a few ENT’s without a firm diagnosis. MRI states mild prominent lingual tonsils with the left larger.  I have no apparent lumps in my mouth, but when I use my finger, it is painful.  I have no lumps in my neck and a previous CT came back negative 2 months ago.  I’ve had various pain that has come and gone since September (which started me seeing doctors).  I have had a few flexible scopes with all normal visuals. 

My current ENT has no answers.  I questioned the MRI and the lingual enlargement.  He dismissed it.   He said we should take A wait and see approach? Which has me very nervous.  My grandfather had throat cancer.  Everyone is telling me you are fine, but my body tells me differently.   This sore throat and ear pain never resolve.  I have a thick feeling.  ENT has no answer for my throat pain and ear pain. 

My head tells me that I have a cancer that is in the early stages but still not significant enough for obvious diagnosis. What should I do? Doctors are not recommending anything else? I can tell you, this is not GERD, post nasal drip or the other suggested issues I have heard.  if I wait and see, then a possible cancer will grow until it is seen on an MRI or lump forms.

i have been reading comments here for a few weeks and decided to join.   I respect your thoughts and opinions.

Nervous and frustrated -

oh, I’m 55, former smoker (18 years ago) and drink more than I should . 

Thanks for your thoughts


phrannie51's picture
Posts: 4721
Joined: Mar 2012

wait and see more often than patients of other cancers.....the problem here is, you have to wait until the ENT’s are able to see something, and right now the CT doesn’t show anything, nor does a scope (and a scope can see a lot!). The last ENT, the wait and see guy....if you haven’t made an appointment to see him in two months, I’d make one tomorrow....no sense in doing the wait and see by yourself. If the pain goes away, well you can cancel the appointment....if the pain gets worse, you can bump the appointment up.


big G's picture
big G
Posts: 5
Joined: Sep 2018

I think Phrannie's advice is spot on since you have seen several Ent's. Make the app. and be ready from the sound of this if it is anything you should be able to catch it early which is almost always good.Be on the lookout for a lump on either side of the jawline or neck which could help with the diagnosis. Good luck

Mickey41's picture
Posts: 4
Joined: Jan 2019

I had a similar expperience.  It took 9 months from when I first had symptoms until the tumor fiinally appeared on CT and a subsequent biopsy disclosed it was a squamous cell cancer of the salivary glands.   I agree with Phrannie that you should make sure you have periodic tests - in my case it was at 3 month intervals.  If you have a good cancer center within a drive you might consider a second opinion.  I was referred to one by my local ENT and although they could not find anything at first, I felt reassured that there was nothing to be done until and unless something was found.  Good luck.  Stay positive.

Posts: 4
Joined: Jan 2018

I would highly recommend Mayo Clinic in Rochester if you can go there.  I was treated there for squamous cell carcinoma of my left tonsil which had spread to one of my lymph nodes.  I am at 15 months post surgery and chemo + radiation with NED so far.  The care was excellent and very patient centered.  I think that they would have a logical approach to your care.  I wish you all the best in getting a satisfactory answers to your problems.  

Posts: 4
Joined: Jan 2019

I have an appointment Jan 28 at Mayo.  I called them and waited to see if they would see me.   Thankfully, they accepted me and I am  eing told that I will be seeing a top ENT there.   I have scheduled a week to be there in case they find something. I assume they would move quickly. I feel better with the appointment but feeling I already know what i will be told.  Mickey, thanks for sharing. 

Thanks for the support everyone. 

William@Jr.'s picture
Posts: 2
Joined: Jan 2019

 Pay attention to your body.  I went to my ENT last January for a small lump in my neck ( right (r) side) the doctor scoped my throat and saw nothing so wasn't really concerned, thought it was an infected lymph node and gave me antbiotics.  3 weeks later he sent for a needle biopsy which showed  HPV Positive 16  .  A PET scan to see where it was located showed r- tonsil but after removing both tonsils without confirmation they found it in my r- lingual tonsil ( 1.3 CM ) and in 2 of the 61 lyph nodes removed by a r- neck disection. One thing about this type I was told is it stays on one side normally.  

     They used Tran Oral Robotics to do very precise surgery at NWM Chicago for which I'm thankful.  5 weeks to heal then 30 rounds of radiation that was no fun at all especially the last half of it.      I Finished last July and just had 2 clean follow ups 3 months apart since and I know I have a long road but anything good is reassuring .  

     One thing I'm concerned with at the moment is it feels like I have a fish bone in my throat since surgery and very little saliva after radiation but after reading some of the other comments I'm doing alright and happy it was caught early.   The Surgeons Nurse said no alcohol or caffene ever again any ideas why ??    I have a cup of Jo and a Guiness occasionally  (only beer that doesn't sting going down) and you have to live a little.    

     It's been a tough 2018  but I'm looking forward to 2019 and beyond without too many side effects of the radiation and continued clear scans.  Everyone has a story and by sharing these someone might pick up a little something they can relate to and find helpful. I know I have so thank you group. 

  all the best! 

wbcgaruss's picture
Posts: 242
Joined: May 2018

On the other side of treatment and your scans are coming back clear. Yes, this is a long road and the healing and changes are measured in months and years not days and weeks. But you are making good progress the way it sounds. As far as the fishbone in the throat feeling I don't know if it will ever go away but I would definitely talk to your ENT about it. Maybe throat dilations may help. I too have very little saliva and have to sip something most of the time or chew gum with a main ingredient of xylitol. Also at night, I have dry mouth and throat and sometimes use the xylimelt tablets. I don't see why they said no caffeine I sip coffee quite a bit because I always was a coffee drinker and have to keep my mouth wet somehow but do not drink alcohol any more but I don't see that an occasional drink will hurt as long as you can stand it and it is not stinging your mouth. I believe others on here have gotten back to the occasional wine or beer but have definitely noticed a difference in taste since treatment. We are all in the same boat with a lot of these after effects it just depends on where your new normal ends up.

God Bless-Take Care-Russ

Posts: 4
Joined: Jan 2019

Thanks for your post William. I too am in the Chicago area. Did you have any other throat symptoms prior to the lump? I too have been scoped several times and I have come to learn that scopes do not always see this type of cancer. I have read so many testimonials that describe doctors missing it. Did you have a CT or MRI prior to your lump?

Thanks again!

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