Looking For Advice

MitchellM

Hi All -

I am at a point in my health scare issue that I could really use some advice. I am a 27-year old male, who for the most part would consider himself fairly healthy (used to work out 3-4 times a week, ate mostly greens, and would only occassionally drink on weekends), I was a smokeless tobacco user on and off for 7 years, however the last 3 months have been absolute hell and I feel that I am at a breaking point and could really use some advice. 

Around mid-December, I went to see my GP about a slightly nagging left ear ache that was lingering from one of the worst sinus infections I had ever had in my life in the early part of October. At this appointment, the GP gave me a 6-day steroid and sent me on my way. A week's time passes and it is now Friday, December 23rd and I have been studying all day and head over to my girlfriend's house to check on the place as she was out of town. When I go to use the restroom I noticed that my left eyelid is droopy and that the pupil in my left eye is much larger than the pupil in the right eye. At this point I am a bit freaked out, but try not to think too much into it and rationalize that it might be due to studying all day.  I head to my parent's house for the Christmas weekend and once I arrive, I look at myself in the mirror again and also notice that my tongue in the back, on the left side, sits higher in my mouth than my tongue on the right side. Additionally, it seems like my toungue is almost too big for my mouth. So my next instinct is to call my GP and get a reference list of ENTs so that I can go to them and get things squared away. 

I meet with the ENT on January 4th and he performs an oral cavity screening and trans-nasal endoscopy and doesn't see anything in the back of my throat, but sends me to get a CT scan of my sinuses. Everything comes back clear and I try to go back to work and life, after having the slight freak out. However, over the next month my tongue continues to feel like it is increasing in size - it is honestly a weird feeling but I can hardly get food through the oral cavity - and I also notice that my throat is producing a ton of excess saliva. I have what look to be bubbles of spit that form on the pillar and uvula and go down to my tongue. Additionally, the amount of mucus and white foam that coats my tongue at any one time is quite alarming. I have been in client meetings where I have to stop and ask for water because I cannot swallow the foamy mucus or clear my throat.

So I go back to my ENT on the 31st of January to get a second opinion and he now says that the tonsils, on both sides of the base of my tonuge, are swollen and gives me some amoxicillin to clear things up. After my 10-day prescription is over things had not improved, if anything they are getting worse. The ear pain on my left side is quite horrible, the foamy mucus is a constant issue, and my tongue feels like it is still quite fatty/too big for my mouth and throat. The droopy eye and enlarged pupil is still an issue, too. Furthermore, I have become quite distraught over all this and my work life is suffering and I know I am starting a scary downward spiral. I have a follow-up appointment with the ENT on Friday and at this point I am honestly looking for any advice on what questions I should be asking him, what test I should be having ran, etc. to rule out any sort of oral/base of tongue cancer. Does this even sound like throat cancer, as I now think non-stop that I dipped too many years and have caused too much harm to my body. I know it is quite deplorable to come to a cancer site and ask for advice when I haven't even been diagnosed, but I honestly am so broken at this point any source of direction would be greatly appreciated. If you made it to this point, thank you and I look forward to hearing from you.

corleone

That’s quite a conundrum.

Honestly, you should get a second opinion from an ENT specialist or neurologist. Doesn’t seem like cancer, but it’s serious.

The left droopy eyelid and enlarged pupil goes with left Oculomotor Nerve Palsy, and might be connected with the sinus infection you had and obviously still have. No idea why you also have hypersalivation, but oral infection might still be a cause. The tongue deviation, seems like a separate issue, but the two I think are connected (like in hypoglossal nerve palsy).

 

So a specialist (like the one I mentioned above) might be able to connect the dots. It seems like a bad infection that went rogue and affected multiple cranial nerves on the left side. Perhaps an abscess somewhere that pushes on different nerves. But if that’s the case, it should have been captured on the CT.

Sprint Car Dude

Certain does not fit the clinical cancer picture

I would get a second opinion. Possibley follow up with a Neurologist. An enlarged pupil is more of an opthalmic or neurologic condition. Some medication can cause a dilated pupil as well. Good Luck.

MitchellM

Thanks everyone for your

Thanks everyone for your response, definitely helps with the nerves. I think y'all are right, in the sense that it's slmething neurological as my left side swells up pretty good too, as I sit here my neck and shoulder are way more tense on my left side, compared to my right and I also get tingling in the left jaw area. I guess the dipping just had me worried this was all mouth cancer related. Again, i really appreciate the guidance. God bless. 

Tonita

Get a second opinion from and

Get a second opinion from and head and neck cancer specialist.

Drivingdaisy

Second Opinions

I would definitely get a couple Drs second opinions.   Either another ENT or Cancer Onologist. Make sure they test you for HPV 16+. Also a Neurolosist.  Lisa

MitchellM

Second Opinion

thanks everyone for the suggestions! I saw my ENT Friday and he performed another tras-nasal endoscopy and "saw nothing". I also had a CT Scan of my neck completed on Thursday and the radiologist said he didn't see anything. I had it sent off for second opinion, stressing my concerns and a second radiologist didn't see anything either. I'm scheduled to meet with a second ENT on Monday and have an MRI scheduled for Tuesday. Is there anything, test wise, I should request from the second ENT? Also, what are the chances that the MRI shows something that the CT scan would've overlooked? At this point, I feel like I'm going crazy and making all these symptoms up, but deep down inside I feel like something is wrong. I haven't really had the urge to eat in nearly 2 months. 

MitchellM

Additionally question

i know that the PET Scan are usually done after diagnosis, but would a doctor be able to order one to rule out cancer? I guess it's a matter of insurance wanting to cover it and I'm not sure if UHC would. 

CivilMatt

MitchellM said:

Additionally question

i know that the PET Scan are usually done after diagnosis, but would a doctor be able to order one to rule out cancer? I guess it's a matter of insurance wanting to cover it and I'm not sure if UHC would. 

questions???

MM,

You may feel crazy, but the symptoms are real. If you have cancer, they are just having a difficult time finding it and if you don’t have cancer, then great.

Usually, a PET is used during diagnosis, it often shows ALL areas of activity and is performed from the “eyes to the thighs” to cover all the bases.  Just because an area lights up does not mean cancer.

I believe the doctors are just going down the list and checking you out.  If you feel slighted, then get a 2^nd opinion soon.

I hope you are ok.

Matt

MitchellM

CivilMatt said:

questions???

MM,

You may feel crazy, but the symptoms are real. If you have cancer, they are just having a difficult time finding it and if you don’t have cancer, then great.

Usually, a PET is used during diagnosis, it often shows ALL areas of activity and is performed from the “eyes to the thighs” to cover all the bases.  Just because an area lights up does not mean cancer.

I believe the doctors are just going down the list and checking you out.  If you feel slighted, then get a 2^nd opinion soon.

I hope you are ok.

Matt

I really appreciate the

I really appreciate the feedback Matt! It is quite scary, especially cause I feel so young. I'm hoping if there is something there, they find it soon as it has only been two months since the symptoms seemed to have started and I hope it is still early enough to cure/manage. 

CherieLW

MitchellM said:

Additionally question

i know that the PET Scan are usually done after diagnosis, but would a doctor be able to order one to rule out cancer? I guess it's a matter of insurance wanting to cover it and I'm not sure if UHC would. 

I would wait for second

I would wait for second opinion. My dad's oncologist at the James started pet scans aren't trusted all the time. Wishing you the best!

corleone

MitchellM said:

Additionally question

i know that the PET Scan are usually done after diagnosis, but would a doctor be able to order one to rule out cancer? I guess it's a matter of insurance wanting to cover it and I'm not sure if UHC would. 

MRI

MRI is better because shows the soft tissue in greater detail and contrast. So in case of an infection, might be helpful.

PET-CT is in this situation a bit tricky, because it shows hiperactivity, that could be caused by cancer cells or inflamation. Tha's why (knowing there a lot of inflamation in that area) I think it might give false positives and make you worry even furhter.

candyshapiro

getting correct diagnosis

The ear pain and all you are saying sounds like what I went thru for the past year and a half to get help. Bottom line I have tonsillar cancer that runs down to the base of the tongue. I finally had surgery last Tuesday and am now waiting for the pathology results. I had to have a radical node disection of the neck. I know what you have been going thru. It may be located like mine in a very hard place to find anything to biopsy. THe one piece of advice is to go to a top throat neck cancer specialist not just ent. That was my mistake. I had a ct scan as well with nothing but it was not a contrast one. What area are you located in.

 

candyshapiro

MitchellM said:

Additionally question

i know that the PET Scan are usually done after diagnosis, but would a doctor be able to order one to rule out cancer? I guess it's a matter of insurance wanting to cover it and I'm not sure if UHC would. 

petscan

As soon as a biopsy is positive then they will order or should order a pet scan to identify any other areas of concern. I went robotic and a ct scan was done to help with the surgery. Sometimes they also do the MRI as well.

MitchellM

candyshapiro said:

getting correct diagnosis

The ear pain and all you are saying sounds like what I went thru for the past year and a half to get help. Bottom line I have tonsillar cancer that runs down to the base of the tongue. I finally had surgery last Tuesday and am now waiting for the pathology results. I had to have a radical node disection of the neck. I know what you have been going thru. It may be located like mine in a very hard place to find anything to biopsy. THe one piece of advice is to go to a top throat neck cancer specialist not just ent. That was my mistake. I had a ct scan as well with nothing but it was not a contrast one. What area are you located in.

 

Candy -

Candy -

Thank you for your response! I just had a second opinion from an ENT and completed a head and neck MRI. The results came back normal, except the report did mention "A few scattered small lymph nodes are noted but no enlarged lymph nodes are detected."

I am in the Dallas area and am hoping to get get a final opinion from a Cancer center over the next two weeks. What are some questions I should be asking?

MitchellM

Following up

Just in case this thread will serve anyone help in the future, with regards to having similar symptoms, I am in the process of waiting for a couple biopsy results. MRIs, CT Scans, dental velscopes have all come back negative, but still have some symptoms that worry me (loss of taste on left side of tongue, swollen left side of tongue, left ear pain / fullness, loss of appetite). Definitely nervous,  but am trusting the professionals at this point (9 of which have said no cancer). Will be back Thursday to let y'all know what the biopsy shows.

SuzJ

Always..

Always go with your gut feeling, it is something that Drs wish they had, and few people have. Knowing your own body is your number 1 defense.

MitchellM

Follow Up

Just got my results back and there wasn't any sign of cancer. The report reads "The foliate papillae have been extended by the underlying enlarged lymphoid follicles in the lamina propria. Germinal centers are noted in some areas. Minor salivary glands and skeletal musel also present. No neoplasm identified."

Diagnosis: Hyperplastic lymphoid follicle.

Not sure what my next steps are, but definitely relieved. 

MMDowns

Good! No sign of cancer!!

Good! No sign of cancer!! That's fantastic.  Plus, you have answers.  There's the positive.  Focus on it and breathe  Good luck to you in the future.  You will be OK.