ENT visit "not so good"

[eye2dry]

Hello All.

I felt that seeing the new ENT today for the lump in front of my left ear would go like this;

we walks me to the door after the visit and he says that with AI diseases you'l get these swellings frequently...not to worry.

My PCP told me weeks ago it was probaly just an enlarged lymph node, maybe from a allergy, sinus issue,etc..

After he examined me and talked to me..at which I told him of my fathers death from parotid cancer and recent excision for squamous skin cancer near my left ear (at that he pursed his lips and shook his head) and my AI diagnosis...he said--

1. whatever it is it has to come out

2. need a CT with contrast first to see what we're dealing with. he said it felt to be 1 cm but could be "just the tip of the iceberg"

3. he never used the term enlarged lymph node....he said "your parotid gland'

4. he told the office scheduler to set up the CT and she asked for diagnosis and he said:

lymph node cancer and the copy of the order says that as well.

ANYONE want to interpret this for me...?please?
why no needle biopsy?
my CT is for June 5th.


eye2dry

[MissyLouWho?]

I think this is definitely a case of no bedside manner.  I know it is scaring you to death, especially with your dad's history, but try to remain calm until it has been confirmed.  He may have no idea what he's talking about and is jumping the gun.  He may be having a cranky kind of day and not thinking about how he is handling a very sensitive situation. 

Take a deep breath.  Schedule a second opinion with someone else asap and explain that you are to have this surgery and don't want to if it's not necessary but given your dad's history, you are scared out of your mind.  Tell them it's an emergency visit and you need to be seen asap! 

Try to stay calm.  It could very well still be just what your PCP said.  But get that second opinion.

Many hugs and prayers and calming vibes coming your way 

[jazzlover]

EEK! I would be scared too!

My doctor once ordered a mammogram due to a strange lesion on my breast. He told me he was not that concerned about it but that he was going to write on the order "mass in breast" so that insurance would pay.

So maybe this dr just didn't tell you WHY he wrote "cancer" on the order. After all, he doesn't KNOW for sure.

Stay calm and hope for the best!!!

[4Kids]

Hi there

Please don't panic. The more help you get more quickly you will know for certain what you are raking with. I will keep you in my thoughts that it is nothing!

[irish]

I guess if it was me I would just go ahead and get the testing done that he wants. I am sort of a realistic person and I guess I would put your doc in that category also. He is assuming that the lump is cancer until he proves that it isn't.

I guess with your previous cancerous skin issue and the fact that there is a family history of cancer in the parotid gland I would want a doc who is realistic and stepping up to the plate. He is doing all the testing he needs to do. He will excise the gland if he needs to. The scans can tell a lot.

I would not panic at this point. If you went to a doc who wanted to do a biopsy and putz around the time will go by and you might not be diagnosed (for sure) as soon as you would with this guy.

By doing the testing he is checking out if there is more than the visible lump. This is only common sense. Stop and think about this. The worst it can be is a cancer and the best it can be in benign. That makes it a 50-50 proposition. The wise thing is to do what he orders, get the results and find out what plan B is.

What you decide is up to you. I would not panic at this point. I would get this stuff done and get on with whatever else needs to be done. The sooner the better. Any time there is a cancer close to another lump it should be assumed that the lump is cancer until proven otherwise. Good luck and let us know how this comes out.

Also, the insurance probably needs to have this diagnosis to justify the testing that is being done. Irish

[gurs]

Please try not to worry....have the test and go from there. YOur doc is just being cautious. They have to have a diagnoses on the order, and will often use a term that maybe scary, but they have to for insurance etc.
I had headaches all the time and my MRI said "Brain tumor" or something like that? it was nothing.

Autoimmune stuff often has these strange things-our bodies just going nuts. If something turns up on the test, then you can worry.
No sense in getting yourself all worked up. A friend had swollen parotid glands all the time and told her right away it was cancer..they did some surgery and found absolutely nothing..it was all some type of autoimmune inflammation.

hang in there!

Gursie

[Gayle]

HI!
Sending hugs!!!

Okay - does it actually say lymph node cancer or does it have R/O lymph node cancer. He can not know that is what it is without a biopsy. I would do the test and then go from there. Know you have a zillion prayers and positive thoughts on your shoulders and surrounding you now! It will all be good! Breath... deep breath now.... BREATH..... slowly take a deep breath and let it out slowly.. 5 times...

Head up! You need your wits about you so you will feel the strength of our thoughts.

More hugs,
Gayle

[Cheryl]

Eye2dry,
On the order for the CT, he probably wants the radiologist to look specificly for the possibility of parotid cancer, since you have a family history.  I'm glad he's checking that out for you, instead of blowing it off as nothing of importance.  It would have been nice if he'd explained it better to you.
Best wishes for good results on your CT.  Please keep us posted.   (By the way, it is common to have a scan before a biopsy.)
Hugs and prayers,
Cheryl

[loulou]

Hi eye2dry

If he can get the answers or have a better idea with a CT scan it would be not be invasive like a biospy, i will be thinking of you and hope you do get a good result from the scan on Tuesday, in the meantime try to plan something to take your mind off your concerns and worries, i know its only natural to be anxious, but your head will spin, i like walking when i can, that helps.

take care
xloulou

[Crymeariver]

If he mentioned lymphoma then it has to be an excisional biopsy.  CT scan then surgery seems like the right approach.  I've had two biopsies so far.  I had enlarged parotid glands in front of my ears which my eye oncologist described as suspect but the hemotologist said that it was chronic SJS enlargement.  Either way the Rituxan for the eye lymphoma knocked down the parotids as a side benefit. 

Right now your doc does not know what it is.  He will need to see the pathology results. He probably also mentioned lymphoma for the benefit of the CT techs and radiologist who will be reading the scans. 

Sorry you're going through this.  Not knowing and waiting is the worst.  Good luck next week.

[eye2dry]

Gayle- The doctor said lymph node carcinoma, did not say R/O.

At the bottom of my orders for the CT the diagnosis codes were

196.0 and 173.3

which I think 196.0 stands for undiagnosed malignancy

173.3  is for squamous cell carcinoma (thats what I had on my face by that ear)



Crymeariver- he said after reading the scans he  will make the surgical plans.

he went on to say it could be a incision in front of the ear and he indicated with his finger a line about 4 inches long.

or he may make a cut in front of my ear, then back along the angle of my jaw, then down the side of my neck. with his finger he showed me a length about 8 or so inches  long.

is he doing all this? or will it be a surgeon?

seemed like my dad was in the biopsy- surgery a long time as I was told via a phone call they were staging it while he was still under anesthesia...they took the lump out and lots of additional tissue and many nodes.

The ENT wanted to know what type of parotid cancer my dad had and I said I didn't remember but it had a real long name. And he said "they all do".

My husband is home and I can tell he is worried for me. he is not working tomorrow, he says he is needed at home! But I have plans of working my next scheduled day..which is monday.

Yes, I feel panic rising in my chest, palpitations and I can't eat.

To think I was just giving encouragement and help to someone here on this forum yesterday and now I am forgeting all the advice I gave them.


eye2dry

[Aquarius]

Please get a second opinion, maybe even a third.   Removal of a gland is permanent and not to be taken lightly based on one doctor's recommendation.   

It doesn't sound quite right that he responded "it has to come out" without more conclusive tests - a CT scan, a biopsy and whatever else they use to confirm a diagnosis.  I would not go for a CT scan alone if a biopsy would yield addtl critical information.   

I have heard too many stories of doctors, most particularly ENTs for some odd reason, that jump to a surgical approach. 

It is cause for even more suspicion if he is doing the surgery. 

Some doctors are motivated by surgical fees, and some because they simply like to perform surgical procedures - they enjoy it, that is why they went into medicine. 

This may not be the case with your ENT whatsoever but please proceed with extreme caution - eyes wide open.  It's your body and you must live with the result.

Sending many positive thoughts and best wishes your way that you will be guided to make the right decision based on the right diagnosis by a capable doctor.   Let us know how your are doing when you feel up to it. 

[Crymeariver]

So he thinks the squamous cell skin lesion has spread to the local node and/or the parotid?  I'm a bit surprised the derm who took care of the lesion didn't suspect anything at the time.  Perhaps you can call the derm and get his opinion?  He is familiar with your case and the stage of the lesion etc.  Surely, he's familiar with the risks of it spreading and would have mentioned it?

Get the CT scan and this ENT's take on it.  You can always take the results to another doctor. 

[irish]

You are just starting in this journey, and have yet to get the cat scan.. My next question is about the experience of the ENT that you see. Some ENT's are really awesome at their job and are very good in their surgical skills.

I would make sure to ask him how much surgery he has done like this and I would also ask him what makes him think that this cancer has spread. The testing that he is doing will be needed and it is good that he is proceeding. Someone mentioned your dermatologist and it would be good to call and talk to his nurse and ask him to call your. As mentioned previously, you could ask what he thinks about this whole situation.

I have to tell you that I have had my right submandibular gland removed and can't tell any difference.It had a lot of stones in it and was probably not functioning very well anyway. It would be hard to know what the impact of removing your parotid would have on you. If it isn't producing any saliva you would not miss it.

You have the right to ask all the questions and get the answers you need prior to making a decision. Also, you know your doctor and his experience so that should help you make a judgement call. Good luck. We are all waiting to hear on this. Irish

[AAACGRL]

I had my right Submandibular gland taken out too, Irish. Yeah I didn't notice any less saliva then before it was out. 

I had my pcp blow the acorn looking bump on the side of my face as a lymph node and that it was reacting to a canker sore.   Good grief.

I had to have a CT scan which showed no tumor or stones. So the ENT thought it was infected due to Sjogrens so months of antibiotics and then he said it has
to come out. I remember though on the CT scan thing there was something about a neoplasm on the order form. He wanted to make sure there were no cancerous growths going on. They usually will take the growth or gland out to send off to pathology. They did with mine anyway.

I am hoping the best for you.  Do you have any pain in that area??