Last Question / Advice

MitchellM

I apologize in advance for creating a new thread, but I wanted to write out one long post, to both vent my frustration and how scared I am and to look for advice.

For starters, I have had been a user of smokeless tobacco for roughly 8 years. On and off, there would be times that I had quite, earlier this year I had quit for nearly 6 months, only to dip a couple times here or there. I was also a very social drinker in college, I'm only 27, but have stopped that as well as I have been focusing on several professional designations and I am just getting older.

Well back in August, I noticed an ulcer on the inside part of my right lip where I used to dip. What drew my attention to this was two things, first my lip had begun to tingle on and off and secondarily, I had a pretty good bruise on the outside portion of my lip that coincided with the ulcer on the inside (think labial mucosa). I maticuloulsy watched this thing for about a week and didn't think it was healing. I visited a dentist and he ran the Velscope and said it was showing up as the color that could indicate something nefarious, but still thought it was an ulcer. That was it, I told him that I am the type of person (Investment Analyst) that would dwell on the numbers and statistics and would not be able to focus until I had a definitive answer. I was visiting two different dentist at this time and he said that he could refer me to an oral surgeon, while the other dentist could perform the biopsy in his office. I had the biopsy performed on August 12th and had the good news by the end of the week. 

Everything should've ended there, but in the back of my mind I still believed something was wrong, possibly that the biopsy missed the cancer cells? He took out the entire ulcer, which he also told me was a lot deeper than expected (red flag in my mind). Over the next two months, I noticed several things that have scared me and basically put me to where I am today: down-right frightened....

First, this was all done on the right side of my mouth and while the doctors don't say they notice it, I can definitely tell that the right side of my face looks different that the left, in the sense that it seems either swollen, or like the muscle has disappeared. Especially where the upper and lower lip meet one another.

Secondarily, I have been getting tingling sensations for two months now on that right side, in the same area that is swollen. It is pins and needles. I have also begun developing the tingling on my chin on the right side as well. The tingling goes from my right chin, all the way up into the tear duct area on my right side, including portions of my nose. I have also noticed scabbing in these areas on the outside portion of my mouth. One above the lip and a second one in the area between my chin and cheek. These look like scabs, but they just won't heal. I also now get occasional tingling throughout my entire body. 

Third, I have noticed that the gums of the teeth closest to the ulcer on the bottom have begun to recede quite a bit. The dentist said they looked fine and it wasn't until I showed them a mold I had made from a previous dentist that they actually believed me. This I think is the most frustrating part, as I feel like they think I am just a loony, but I know this stuff isn't being made up. I also noticed that my bottom teeth have shifted quite a bit.

Fourth, about three weeks ago I noticed a lymph node in my neck (right side) that was hard, immoveable, and didn't hurt - granted my right side of my throat does hurt from time to time. I was traveling during the week, actually noticed this on my flight to work, and had the ENT check this out as soon as I got back. He performed a scope did a fine needle biopsy and everything came back fine. Again, I would have to be the unluckiest person in the world to have two separate biopsies (one incisional and one fine needle) come back as negative, only to be wrong. I will say this, while the node is still slightly hard, I can definitely move it around now. I also had a CT scan of my head and neck and the radiologist didn't see any sort of questionable lymph nodes.

So, from there I started doubting myself, but the thing that has thrown me off the most is the nausea I have constantly had for the last two months and the fact that the tingling and persistent swelling/loss of muscle has continued.

Finally, last week, I noticed the intense tingling of my lower lip again, close to the original biopsy site (which still tingles on its own and has loss of color/hard knot the dentist are calling scare tissue), but extending to where my upper and lower lip meet, and resulted in a burning sensation for a day and has now left a rough area with a solid bump under the skin. Furthermore, I notice like 4-5 different ulcers, if you can call them that. They are indentions into the mucosa themselves but don't have any sort of white filling or anything. Sometimes when I drink water or eat they will turn hard white, with a scab, but then resort back to not having a scab later. Hell the only way I even noticed them was because the mucosa was really rough (can feel it with my tongue) and I can only see them when looking at it a particular way in the light. It is frightening, because like everything else over the last two months, nothing seems to heal or improve.

I am to a point where I want to break down, because I feel like I have driven myself mad. But at the same time, I keep thinking to myself, "you know your body better than anyone else, these symptoms aren't phantom, as you can see the changes (like the teeth shifting and the gums receding)". I guess I am looking for advice, and just wanted a place to vent. I'm pissed at myself for working myself up, for dipping, for doing this to my family and girlfriend, etc. 

I'm traveling for work once again this week, but have called the original dentist who performed the biopsy and scheduled a second one next Monday. I just can't take it anymore, I am going to have the rough area biopsied and also the original ulcer spot, as the top portion is still extremely red and I know this is the portion that should be biopsied anyways as the center of what used to be the ulcer could just have necrotic cells that wouldn't show up on the biopsy anyways.

So, if you read this long, I really appreciate the fact you stuck through my rant and would also appreciate some advice and feedback. I feel like if everything does come back ok next week, I really need to consider some sort of health anxiety therapy.

 

To me, what I am most scared about is that I feel like the doctors are missing something and by the time things get discovered, it'll be too late. I have met with both dentist at least 3-4 times over the last two months for them to look at the biopsy healing and they have never seemed concerned, but it still hasn't put me at ease.

OKCnative

Sorry you are going through

Sorry you are going through this. Honestly, the last person I'd have do a biopsy and give me cancer advice is a dentist. It's just not their field. I'd immediately make an appointment with a ENT. They can biopsy the spot in your mouth and the node on your neck. I go to the ddentist regularly and he never noticed anything wrong. My ENT (2nd one, I had to fire my 1st one) recognised it as cancer immediately and did a biopsy right then and had me results the next day.

MitchellM

OKCnative said:

Sorry you are going through

Sorry you are going through this. Honestly, the last person I'd have do a biopsy and give me cancer advice is a dentist. It's just not their field. I'd immediately make an appointment with a ENT. They can biopsy the spot in your mouth and the node on your neck. I go to the ddentist regularly and he never noticed anything wrong. My ENT (2nd one, I had to fire my 1st one) recognised it as cancer immediately and did a biopsy right then and had me results the next day.

Thanks OKC

Thanks OKC, in fairness my ENT did biopsy the lymph node, just not the spot / ulcer in my mouth.

I also called and spoke with the pathologist who conducted my report and she mentioned that the dentist/peridontist who conducted the biopsy is very good at what he does. I also think that the pathologist is good, as she leads the TAMU / Baylor School of Dentistry here in Dallas. I'll look to make an appointment with an ENT though, however my ENT didn't think the ulcer looked bad the first time he saw it.

OKCnative

MitchellM said:

Thanks OKC

Thanks OKC, in fairness my ENT did biopsy the lymph node, just not the spot / ulcer in my mouth.

I also called and spoke with the pathologist who conducted my report and she mentioned that the dentist/peridontist who conducted the biopsy is very good at what he does. I also think that the pathologist is good, as she leads the TAMU / Baylor School of Dentistry here in Dallas. I'll look to make an appointment with an ENT though, however my ENT didn't think the ulcer looked bad the first time he saw it.

I had to go to a second ENT

I had to go to a second ENT before my concerns weretaken seriously.

MitchellM

OKCnative said:

I had to go to a second ENT

I had to go to a second ENT before my concerns weretaken seriously.

I completely understand. I'll

I completely understand. I'll follow up with a second ENT if my biopsy on Monday doesn't go according to plan. Heck, I might even follow up with my original ENT. He has done a pretty good job of feelign for me and in fairness, I asked for the lymph node biopsy and he did it. I asked for the scope and he did that. I haven't necessarily focused on the ulcer on my lip with him and maybe I should. 

CivilMatt

An ENT or Dentist?

M,

New threads are better than piling on (in my opinion).

You need a qualified ENT to do a complete work up on you.  Dentist have gotten their share of  credit for discovering cancer, but you need an ENT.  Biopsies are sometime wrong; you need to confirm your real condition.

My cancer was discovered by a lump on my neck, no pain.  While chew isn’t good, it does not guarantee cancer.

Matt

MitchellM

CivilMatt said:

An ENT or Dentist?

M,

New threads are better than piling on (in my opinion).

You need a qualified ENT to do a complete work up on you.  Dentist have gotten their share of  credit for discovering cancer, but you need an ENT.  Biopsies are sometime wrong; you need to confirm your real condition.

My cancer was discovered by a lump on my neck, no pain.  While chew isn’t good, it does not guarantee cancer.

Matt

Thanks Matt. Will be

Thanks Matt. Will be following up with an ENT when I get back to Dallas. Most recent issue I’ve been facing now is a complete feeling of pinched nerve from face to neck to back of shoulder, with little to no tightness of the muscle. Also have a rubber band sound in the opposite ear any time I open my mouth or move my head and neck to the right 

MitchellM

Just got off the phone with

Just got off the phone with my ENT and I will be getting a biopsy and MRI completed on Monday. It at least puts my nerves to rest a bit, that I can finallly figure out what is going on.

Mom68

Just throwing this out there

Hi MitchellM! I agree with what folks have posted here, and am glad you are getting a biopsy done on Monday. Please keep us up to date on the results.

I'm just throwing this out there...and I feel like a wrench in the wheel about this...apologies...but have you considered getting a stomach scope and a colonoscopy? You could have something in your stomach, or esophagus or colon that COULD be driving the growth in your mouth or a node issue. I hate throwing the wrench in the plan there, but having everything checked out couldn't hurt. Best Wishes...Mary

abuchmeyer

Try to find another ENT

I'm gonna go and state what the rest are saying.  Try to find another ENT.  I just had a fine needle biopsy done earlier this week on a parotid mass by Mass Eye and Ear (high up there on the the best ranking teaching hopitals for ENT stuff) and was told that there were higher chances of getting false negatives or inconclusive results in the head and neck regions. I would also probably suggest getting and MRI/CT scan of your head.  

It sounds like you have some facial nerve palsy going on ...just like me.  Tingling and numbness and sharp pains on half my face going on right now with me.  Not useful or helpful information, but I too use to live in Texas (San Antonio) and just moved to Massachusetts due to healthcare reasons.  I feel your pain and frustration as I first discovered my problem back in December and I AM JUST NOW GETTING A BIOPSY DONE! I went to several doctors in different cities in Texas (San Antonio, Austin, Waco) and it seemed no one was getting anywhere with me due to the rarity of my situation (congenital hemangioma + cystic parotid mass). So please the best advice I can give you is try different doctors out and get a different opinion!!!  Don't lose hope with this.  I KNOW...I KNOW how frustrating this is. 

 

Useful advice: Since you are in Dallas try to go to an ENT in at a teaching hospital if you can... I believe there is a  UT Health Science center in Dallas?  I had poor insurance in San Antonio, so it was difficult to see anyone in my network at the UTHSC in San Antonio. Wish you the best man!  

MitchellM

abuchmeyer said:

Try to find another ENT

I'm gonna go and state what the rest are saying.  Try to find another ENT.  I just had a fine needle biopsy done earlier this week on a parotid mass by Mass Eye and Ear (high up there on the the best ranking teaching hopitals for ENT stuff) and was told that there were higher chances of getting false negatives or inconclusive results in the head and neck regions. I would also probably suggest getting and MRI/CT scan of your head.  

It sounds like you have some facial nerve palsy going on ...just like me.  Tingling and numbness and sharp pains on half my face going on right now with me.  Not useful or helpful information, but I too use to live in Texas (San Antonio) and just moved to Massachusetts due to healthcare reasons.  I feel your pain and frustration as I first discovered my problem back in December and I AM JUST NOW GETTING A BIOPSY DONE! I went to several doctors in different cities in Texas (San Antonio, Austin, Waco) and it seemed no one was getting anywhere with me due to the rarity of my situation (congenital hemangioma + cystic parotid mass). So please the best advice I can give you is try different doctors out and get a different opinion!!!  Don't lose hope with this.  I KNOW...I KNOW how frustrating this is. 

 

Useful advice: Since you are in Dallas try to go to an ENT in at a teaching hospital if you can... I believe there is a  UT Health Science center in Dallas?  I had poor insurance in San Antonio, so it was difficult to see anyone in my network at the UTHSC in San Antonio. Wish you the best man!  

Thank you!

Thank you so much for your response! I really, really appreciate it. I was actually able to get into an oral surgeon that I trust in Dallas first thing Monday morning. He already said he will complete the biopsy, have my buddy going with me to drive me home. I am then going to go over to the ENT and request an MRI. If he doesn't give it to me, I'll switch ENTs until I can find one. Hopefully will have more information by Monday afternoon and I know seeing these doctors will help put my mind at ease. I'll look into the teaching hospital as well, I think that is a fantastic idea.

MitchellM

Mom68 said:

Just throwing this out there

Hi MitchellM! I agree with what folks have posted here, and am glad you are getting a biopsy done on Monday. Please keep us up to date on the results.

I'm just throwing this out there...and I feel like a wrench in the wheel about this...apologies...but have you considered getting a stomach scope and a colonoscopy? You could have something in your stomach, or esophagus or colon that COULD be driving the growth in your mouth or a node issue. I hate throwing the wrench in the plan there, but having everything checked out couldn't hurt. Best Wishes...Mary

Thanks Mary for the response!

Thanks Mary for the response! I really appreciate it! I had a colonoscopy completed earlier this year, as I was having weird symptoms then too and everything came back ok. It might be time for me to regroup with a general practioner again, although I don't necessarily like them because they are so quick to just prescribe medicine versus taking a holistic approach. I hope to have more news after my biopsy on Monday with the oral surgeon, who I really really trust, and the MRI ordered from the ENT.

MitchellM

abuchmeyer said:

Try to find another ENT

I'm gonna go and state what the rest are saying.  Try to find another ENT.  I just had a fine needle biopsy done earlier this week on a parotid mass by Mass Eye and Ear (high up there on the the best ranking teaching hopitals for ENT stuff) and was told that there were higher chances of getting false negatives or inconclusive results in the head and neck regions. I would also probably suggest getting and MRI/CT scan of your head.  

It sounds like you have some facial nerve palsy going on ...just like me.  Tingling and numbness and sharp pains on half my face going on right now with me.  Not useful or helpful information, but I too use to live in Texas (San Antonio) and just moved to Massachusetts due to healthcare reasons.  I feel your pain and frustration as I first discovered my problem back in December and I AM JUST NOW GETTING A BIOPSY DONE! I went to several doctors in different cities in Texas (San Antonio, Austin, Waco) and it seemed no one was getting anywhere with me due to the rarity of my situation (congenital hemangioma + cystic parotid mass). So please the best advice I can give you is try different doctors out and get a different opinion!!!  Don't lose hope with this.  I KNOW...I KNOW how frustrating this is. 

 

Useful advice: Since you are in Dallas try to go to an ENT in at a teaching hospital if you can... I believe there is a  UT Health Science center in Dallas?  I had poor insurance in San Antonio, so it was difficult to see anyone in my network at the UTHSC in San Antonio. Wish you the best man!  

I also forgot to mention that

I also forgot to mention that I had a CT scan completed earlier this month and there was nothing seen on the film. I even sent it to a second opinion website and mentioned specifically what I was worried about and they said looked it over and said they saw no lymphnodes that looked suspicious. Obviously, I know that they can't see to the microscopic level, but I am just so tired of running around thinking something is wrong and would just like some answers. I think Monday will be a huge step in the right direction, as I am not taking no for an answer from anywhere.

MitchellM

abuchmeyer said:

Try to find another ENT

I'm gonna go and state what the rest are saying.  Try to find another ENT.  I just had a fine needle biopsy done earlier this week on a parotid mass by Mass Eye and Ear (high up there on the the best ranking teaching hopitals for ENT stuff) and was told that there were higher chances of getting false negatives or inconclusive results in the head and neck regions. I would also probably suggest getting and MRI/CT scan of your head.  

It sounds like you have some facial nerve palsy going on ...just like me.  Tingling and numbness and sharp pains on half my face going on right now with me.  Not useful or helpful information, but I too use to live in Texas (San Antonio) and just moved to Massachusetts due to healthcare reasons.  I feel your pain and frustration as I first discovered my problem back in December and I AM JUST NOW GETTING A BIOPSY DONE! I went to several doctors in different cities in Texas (San Antonio, Austin, Waco) and it seemed no one was getting anywhere with me due to the rarity of my situation (congenital hemangioma + cystic parotid mass). So please the best advice I can give you is try different doctors out and get a different opinion!!!  Don't lose hope with this.  I KNOW...I KNOW how frustrating this is. 

 

Useful advice: Since you are in Dallas try to go to an ENT in at a teaching hospital if you can... I believe there is a  UT Health Science center in Dallas?  I had poor insurance in San Antonio, so it was difficult to see anyone in my network at the UTHSC in San Antonio. Wish you the best man!  

Also, I was so self-absorbed

Also, I was so self-absorbed that I forgot to wish you luck on your biopsy. I hope everything turns out well!!!

MitchellM

Well I have the biopsy

Well I have the biopsy tomorrow but know it’s cancer. In the last 5 days, I’ve developed numbness / symptoms of infiltration into the spinal accessory nerve and Horner’s syndrome. Fast moving and very scared, just a formality at this point. Hoping to be able to somewhat treat this. 

caregiver wife

MitchellM said:

Well I have the biopsy

Well I have the biopsy tomorrow but know it’s cancer. In the last 5 days, I’ve developed numbness / symptoms of infiltration into the spinal accessory nerve and Horner’s syndrome. Fast moving and very scared, just a formality at this point. Hoping to be able to somewhat treat this. 

Trusting yourself

Husband's only symptom was earache.  I still kick myself for not getting it checked out sooner.

We have had better luck with Internest as primary care doc.

Keep us posted,

Crystal

MitchellM

Completely devistated. None

Completely devistated. None of my doctors seemed to really help. I am trying to figure out the next steps, how do you go about getting with an ENT that specializes in H&N cancer?

swopoe

MitchellM said:

Completely devistated. None

Completely devistated. None of my doctors seemed to really help. I am trying to figure out the next steps, how do you go about getting with an ENT that specializes in H&N cancer?

What happened yesterday? 

What happened yesterday? 

Where do you live again? Maybe someone has a rec in that area for a good doc, or we can help you find one. Sorry you are not happy with the care you are getting.

OKCnative

MitchellM said:

Completely devistated. None

Completely devistated. None of my doctors seemed to really help. I am trying to figure out the next steps, how do you go about getting with an ENT that specializes in H&N cancer?

I made an appointment with an

I made an appointment with an oncologist and he recommended a ENT that was well versed in head and neck cancer - best decision I made.

MitchellM

swopoe said:

What happened yesterday? 

What happened yesterday? 

Where do you live again? Maybe someone has a rec in that area for a good doc, or we can help you find one. Sorry you are not happy with the care you are getting.

Im in Dallas! Was looking to

Im in Dallas! Was looking to get the original spot biopsied again, as they don’t seem to believe me when I say there is already nerve involvement as my right Side of my face shows tell-tale signs of PNS (droopy mouth, nose, no food, etc.). Not to mention the lymphnode in my neck and now have accessory nerve symptoms (shoulder rollling forward / loss of trapezius muscle control). i had this damn thing figured out first eeek of August, if only a freaking doctor would listen. 

Have a neck MRI scheduled and finally got a meeting with an oncologist. Not till next Monday. Also waiting on results from a brush biopsy. I’m willing to bet i know how those shape up. 

 

Taking any recommendations in Dallas. please help 

MitchellM

OKCnative said:

I made an appointment with an

I made an appointment with an oncologist and he recommended a ENT that was well versed in head and neck cancer - best decision I made.

Have scheduled an appointment

Have scheduled an appointment with an oncologist for Monday, currently waiting to get an MRI. Hoping to have more news by the end of next week.