Where to go for accurate diagnosis?

DaddyOf2

Hi everyone. I will start by saying that I have not been diagnosed with head and neck cancer or any type of cancer for that matter, so please forgive me for posting here. I'm just really concerned about some symptoms I've been having since January or February of this year (2020). I have a wife and two small children (1 and 5), and I am the sole provider for our family. I'm 38 years old, and due to a rare blood condition that caused me to have a stroke at age 28, I can't get any life insurance. So all I can do is try my very best to be around for them. All that being said, here are my symptoms:

For the past 4-5 months I have had intermitent sharp/stabbing pain in my right ear. During this time, I haven't always felt the pain, but there have frequently been days that I felt it all day and it was very painful. I initially wrote it off as an ear infection and didn't go to a doctor due to it being right around when COVID started. As time went by and the problem did not go away, I finally saw an ENT who did an endoscopy. Crazy side story....ever since I was a kid I have been able to reach my tongue all the way back behind my uvula and to the back of my nasal canal. I explained this to the doctor and told him that I had also been feeling a hard lump right there with my tongue. Upon doing the endoscopy, he said he could not tell what it was I felt, nor did he see anything "abnormal". Well, I wanted a second opinion and saw another, more experienced ENT. I told him the exact same thing and had him also perform an endoscopy. He saw where my tongue was touching claimed it was my torus tibarius, and that in all his 40 years, he had never seen anyone be able to do this.

Well, me being a hypochondriac ever since my stroke at 28, I still wasn't satisfied. I finally called my primary care physician and asked for him to schedule a scan or something....anything that would accurately find a diagnosis if there was anything to be found. Long story short, he put me on an antibiotic and said let's wait and see if it's because of a current sinus infection I had. Well, I'm almost done with the antibiotic and I'm still feeling the pain in my ear. The lump I'm feeling is also still there......so can someone here please tell me if you think I should go to a specialist who could either rule out or diagnosis any abnormalities? If so, WHERE? I'm in South Mississippi (Hattiesburg), but I would be willing to go anywhere at this point. I've lost sleep over this and just want to know that I'm doing everything I can.

Thanks in advance for any help provided, and I pray for the best possible outcomes for everyone here who is currently dealing with cancer. God bless you all.

wbcgaruss

Scan With Dye

Ask your primary care physician to get you scheduled for a CAT scan with dye for the head and neck area and if there is anything going on I think it will show it such as a tumor or growth. If so they will then do a biopsy. What your primary physician is doing is pretty standard I was on antibiotics for 10 days. My sore throat went away but came back shortly after. He put me on antibiotics another 10 days and the same thing happened the sore throat went away but came back shortly thereafter. He then figured something more serious was afoot so he sent me to an ENT. If you really think something is wrong don't stop pursuing it but you say you are a hypochondriac so you have to know where to draw the line.

Take Care-God Bless

DaddyOf2

wbcgaruss said:

Scan With Dye

Ask your primary care physician to get you scheduled for a CAT scan with dye for the head and neck area and if there is anything going on I think it will show it such as a tumor or growth. If so they will then do a biopsy. What your primary physician is doing is pretty standard I was on antibiotics for 10 days. My sore throat went away but came back shortly after. He put me on antibiotics another 10 days and the same thing happened the sore throat went away but came back shortly thereafter. He then figured something more serious was afoot so he sent me to an ENT. If you really think something is wrong don't stop pursuing it but you say you are a hypochondriac so you have to know where to draw the line.

Take Care-God Bless

wbcgaruss,

wbcgaruss,

Thank you for your response and for the advice based on your first hand experience. I think I may go for the scan you mentioned. And I completely agree with what you said about knowing when to draw the line on being a hypochondriac . I guess I'm only that way because of the no life insurance thing. I'm honestly not scared of death, whenever that day comes. I'm strictly concerned with being here for my wife and kids, or at least being responsible enough to do everything I can to be here for them. 

Thanks again and have a wonderful 4th!

 

Logan51

Do2

I see you have around 150,000 in your Metro area, so you're not in the boondocks like where I grew up (north-central Illinois). The ear ache is very real, but for it to come and go there must be some trigger. A nerve, perhaps? A good ENT, I should think, would address this with a CT. He/she should know the possible causes, and you might want to ask that very question- what could cause this if it's not an infection. A growth pressing against a nerve would be my unprofessional guess. MD Anderson might be an option. 

Duggie88

Dof2

I was in a similar boat. My throat wasn't feeling normal and my primary care doctor sent me to an ENT who did the scope routine and claimed I had acid reflux and a thorndat (spelling) cyst and put me on medication at my next visit to my doctor I told him nothing seemed to change and he sent me to another ENT who saw what the first ENT had seen and said it was an odd shaape and ordered a CT scan. He told me he was pretty sure it was cancer and wanted to do a biopsy. He told me it was cancer but wanted to send me to a doctor in Philadelphia at the University of Pennsylvania because of where it was located. The new doctor also did a biopsy on a Monday which confirmed it was cancer and that Friday morning I spent the day in surgery to remove it. I feel the same as the people above, find someone who will order a CT or PT scan or even a biopsy. Hopefully it is nothing and it will put your mind at ease.

 

Jeff

PipLily

Any update?

Hello.....wondering if you have any further news, and praying things have turned out okay for you. If you’re still in the “ figuring it out “ phase, I agree with Russ.....you need a CT Scan of your neck with contrast. That is what led to the ball rolling for my husband, and his eventual diagnosis. 

DaddyOf2

PipLily said:

Any update?

Hello.....wondering if you have any further news, and praying things have turned out okay for you. If you’re still in the “ figuring it out “ phase, I agree with Russ.....you need a CT Scan of your neck with contrast. That is what led to the ball rolling for my husband, and his eventual diagnosis. 

Thank You All

I really appreciate the feedback you all have given me. It has made me feel much better about being concerned the way I am. I personally wish I could just schedule a CT myself, because none of the doctors I've seen have taken me seriously. My primary care (who I am pretty good friends with) even seemed to somewhat laugh it off and give me an antibiotic. The thing is I feel a HARD, rock-like lump with my tongue right where the pain is coming from. 

I am not, nor will I ever be the suing type. But it baffles me that a doctor can have someone asking for a scan and not grant the request....knowing the many risks they are taking by potentially misdiagnosing. So is there a way I can just get the CT whether they like it or not? I would overpay just to be able to know the facts.

 

MarineE5

Agree on getting more information

Dad of 2, 

My apologies for responding late in this conversation, but agree with Russ, Dave, Duggie and Piplily. We tend to know our own body and sense when things are just not right. Short story on my part. I felt a hard bump under my chin many years ago, wife couldn't feel it and said it was probably nothing. I am not one to run to the Doctor for much, but had a gut feeling. I ended up at the University of Pennsylvania with Base of Tongue cancer. 

So, like the others stated, continue to press forward until you get a concrete answer to your questions. You may want to try a learning Hospital like the University of Pennsylvania. I am not sure which Hospital that is close to you that might be similar. My surgery was in 2004. 

My Best to You and Everyone Here.

DaddyOf2

Duggie88 said:

Dof2

I was in a similar boat. My throat wasn't feeling normal and my primary care doctor sent me to an ENT who did the scope routine and claimed I had acid reflux and a thorndat (spelling) cyst and put me on medication at my next visit to my doctor I told him nothing seemed to change and he sent me to another ENT who saw what the first ENT had seen and said it was an odd shaape and ordered a CT scan. He told me he was pretty sure it was cancer and wanted to do a biopsy. He told me it was cancer but wanted to send me to a doctor in Philadelphia at the University of Pennsylvania because of where it was located. The new doctor also did a biopsy on a Monday which confirmed it was cancer and that Friday morning I spent the day in surgery to remove it. I feel the same as the people above, find someone who will order a CT or PT scan or even a biopsy. Hopefully it is nothing and it will put your mind at ease.

 

Jeff

CT

Duggie, 

Thanks so much for the feedback. I posted last night asking about how to get a CT ordered regardless of whether or not the doctors are "recommending it". Do you have any advice on how I could get the CT scheduled on my own free will? Thanks.

 

wbcgaruss

Well I Think

That the docs taking into consideration you being a hypochondriac and admittingly you saying so because of a stroke at a young age which definitely would make me pay a bit of attention to health wondering if there are some flaws in my biological system that will give me other troubles down the road, well anyway I think the docs taking everything into account really feel there is no problem. But I am surprised that with a patient still complaining of constant pain and a lump they just wouldn't have you get a CT Scan with dye of the head and neck area. These are certainly not the most expensive as compared to a PET scan which is much more expensive. You need a doctors referral as I found some info on these-

 

Do I need a doctor’s referral?

Yes, you would need it as this exam includes exposure to damaging x-ray waves. You can get one through our partner service. If you don’t want to expose your body to radiation, in certain cases you might opt for an MRI scan instead, which does not use radiation.

 

Notice this info mentions an MRI instead which may not need a docs referral if you just want your own scan of some sort. You would still have to depend on the docs to read your scan anyway.

 

Not sure what to tell you except see another ENT or if the pain isn't constant and tolerable with or without pain medication and since you have seen at least 2 ENT's and your primary care physician and they all have said they see nothing to be alarmed about maybe you should consider a majority decision might be right and there really is no problem. If something was out of place here I would think one of the three doctors would be alarmed. You're sort of saying all 3 docs are wrong, are they, I don't know. This could happen although the odds are against it but with the serious possibilities of H&N cancer or some other malady in that area of your body, I know you don't want to take any chances that's for sure. You're options the way I see it is see yet another ENT, or just bear with it and see if your issue works out over time, or try to independently get some sort of scan. So I say Take Care-God Bless and wishing you the best and a resolution to your problem one way or the other, please keep us updated on your situation as I am sure I and other folks would like to know how your situation all worked out,  and below is a link to the page I found scan information on--Take care DaddyO-Russ

https://affordablescan.com/blog/ct-scan-cost-near-me/

 

DaddyOf2

wbcgaruss said:

Well I Think

That the docs taking into consideration you being a hypochondriac and admittingly you saying so because of a stroke at a young age which definitely would make me pay a bit of attention to health wondering if there are some flaws in my biological system that will give me other troubles down the road, well anyway I think the docs taking everything into account really feel there is no problem. But I am surprised that with a patient still complaining of constant pain and a lump they just wouldn't have you get a CT Scan with dye of the head and neck area. These are certainly not the most expensive as compared to a PET scan which is much more expensive. You need a doctors referral as I found some info on these-

 

Do I need a doctor’s referral?

Yes, you would need it as this exam includes exposure to damaging x-ray waves. You can get one through our partner service. If you don’t want to expose your body to radiation, in certain cases you might opt for an MRI scan instead, which does not use radiation.

 

Notice this info mentions an MRI instead which may not need a docs referral if you just want your own scan of some sort. You would still have to depend on the docs to read your scan anyway.

 

Not sure what to tell you except see another ENT or if the pain isn't constant and tolerable with or without pain medication and since you have seen at least 2 ENT's and your primary care physician and they all have said they see nothing to be alarmed about maybe you should consider a majority decision might be right and there really is no problem. If something was out of place here I would think one of the three doctors would be alarmed. You're sort of saying all 3 docs are wrong, are they, I don't know. This could happen although the odds are against it but with the serious possibilities of H&N cancer or some other malady in that area of your body, I know you don't want to take any chances that's for sure. You're options the way I see it is see yet another ENT, or just bear with it and see if your issue works out over time, or try to independently get some sort of scan. So I say Take Care-God Bless and wishing you the best and a resolution to your problem one way or the other, please keep us updated on your situation as I am sure I and other folks would like to know how your situation all worked out,  and below is a link to the page I found scan information on--Take care DaddyO-Russ

https://affordablescan.com/blog/ct-scan-cost-near-me/

 

Pain

How consistent is it with cancer? I know there are some types where you don't always have pain. But what I want to know is, does the pain come and go, generally? Or is it there to stay and only gets consistently worse?

 

 

wbcgaruss

DaddyOf2 said:

Pain

How consistent is it with cancer? I know there are some types where you don't always have pain. But what I want to know is, does the pain come and go, generally? Or is it there to stay and only gets consistently worse?

 

 

I Can Tell You

That the three times I had cancer I had pain or soreness each time that would not go away and it was constant-there all the time. Not unbearable pain and soreness but it was there and would not go away and there was no mistaking it. The first time was throat cancer and I had a sore throat that would not go away. The family doc gave me antibiotics for ten days and the soreness went away but came back shortly. He gave me another round of antibiotics and the same thing happened. So he sent me to ENT and the reason for my sore throat was easily evident when I was scoped-Throat Cancer. The second time was tongue cancer, a small spot on my tongue that stayed sore and given some to go away, it did not. ENT suggested we do a biopsy now so I had him do it right then and there and when the results came back it confirmed cancer again. The third time I had soreness on the left side of my neck. It was there and stayed sore. I went to ENT and he did not see anything alarming but ordered a CT Scan with Dye just to be on the safe side. Scan confirmed cancer but a biopsy was ordered to absolutely confirm cancer and what type. All my cancers once there and advanced enough were sore and painful all the time there was no let-up or come and go I knew something was wrong and my docs confirmed it in a step by step method and biopsies each time. I hope this helps answer your question-Take Care-God Bless-Russ

Duggie88

DaddyOf2 said:

CT

Duggie, 

Thanks so much for the feedback. I posted last night asking about how to get a CT ordered regardless of whether or not the doctors are "recommending it". Do you have any advice on how I could get the CT scheduled on my own free will? Thanks.

 

Not really I think an order

Not really I think an order has to come from a doctor or else your insurance will not cover it 

PipLily

DaddyOf2 said:

Pain

How consistent is it with cancer? I know there are some types where you don't always have pain. But what I want to know is, does the pain come and go, generally? Or is it there to stay and only gets consistently worse?

 

 

Hello!

My husband had zero pain, just a small bit of swelling in his neck. And you’ve probably figured this out, but as a couple others have said...you definitely will need a Doctors order for any type of CT Scan. Hope you’re doing well!

DaddyOf2

Update

My primary care dr has at least ordered labs. I'm not sure whether or not that would detect anything, but it's a start.

Logan51

So...

You are still having the ear aches? Anything else unusual?

DaddyOf2

Logan51 said:

So...

You are still having the ear aches? Anything else unusual?

Dave K

Yes I am, although lately they are not as bad as they have been at times. My biggest concern is the very solid lump I feel, however. I really hope its just some sort of swollen gland etc, but the fact that I've had the problem for 6 months is alarming for sure.

wbcgaruss

Why Won't

Won't your medical folks have a CT Scan with Dye done as I don't think they are that expensive? Did they give you any reasons for no scan? You say you have a lump you have no trouble feeling have they considered biopsies of this lump. Hope there's nothing serious going on here and it gets overlooked. Just so you have confidence in your medical team and feel they are doing the right thing.

DaddyOf2

wbcgaruss said:

Why Won't

Won't your medical folks have a CT Scan with Dye done as I don't think they are that expensive? Did they give you any reasons for no scan? You say you have a lump you have no trouble feeling have they considered biopsies of this lump. Hope there's nothing serious going on here and it gets overlooked. Just so you have confidence in your medical team and feel they are doing the right thing.

CT Scan

I've now been referred to a third ENT, and this time I'm going to nicely demand the CT. I will again describe all my symptoms, which also includes a "tickle" type cough that I get just from breathing for the past few months. Also trouble clearing that one side of my throat.

PipLily

DaddyOf2 said:

CT Scan

I've now been referred to a third ENT, and this time I'm going to nicely demand the CT. I will again describe all my symptoms, which also includes a "tickle" type cough that I get just from breathing for the past few months. Also trouble clearing that one side of my throat.

Be persistent!

And be your own advocate! CT scans are common, and done routinely every day for everything! Blood work isn’t going to tell you much...you need a scan. Very best wishes! Let us know how your appointment goes!

DaddyOf2

PipLily said:

Be persistent!

And be your own advocate! CT scans are common, and done routinely every day for everything! Blood work isn’t going to tell you much...you need a scan. Very best wishes! Let us know how your appointment goes!

CT Done Today

You were correct about the labs....they proved to be useless. I did, however get in with a third ENT who was very thorough. I appreciated him so much, as he understood why I want to be diligent with my health (I let him know about my medical history and how I can't get life insurance). He looked in my ears, in my throat really good, and finally did a CT. He said the CT did not show any abnormalities. However, the scan was not done with dye.....the reason being "it wouldn't show any more than a normal CT, because there is so much bone where we were looking". I have to admit, I don't understand that at all....a growth is obviously not bone, so it should show up with dye. Am I wrong?

 

Anyway, at this point I feel like all I can do is pray. I know something is not right, but I won't get the scan with dye I want. Thank you all for your advice, and more importantly, your prayers.