Scared

Logan51 said:

AC

Could be half your voice box is disabled because of growth pressing against the main nerve. I've had a paralyzed half since 11/1968 due to a smashed/severed nerve caused by auto accident and dashboard. Hopefully when the neck issue is cleared the full function will return.

What State do you live in? Sounds like your Dr.s are being tooooooooooo cautious by the Covid. I got scoped about a month ago, and they only asked me about symptoms before- if I had any. I'm in Illinois. 

You might need to have a laryngoscopy, which is outpatient and they put you under. CT Scan w/dye would tell if you have a growth, but only a biopsy can confirm it is C. That's been a long known fact, here. Dr.s can give their opinions, based on the scan results, and could be right- especially if significant growth is involved. WHATEVER- you do need to get the wheels going forward on this ASAP. If they do not want to treat you- get a referral to the nearest major C Center. Please, for the sake of your kids, and you. Limiting the H&N damage is critical.

Prayers are with you.

I live in Central NY. We've had pretty strict guidelines since March- not that a majority follow unless they are required to. We have just over 4000 cases in my County with a 2% infection rate right now. NYC looks to be almost at 6% and the rest of the state 4.5%. I don't know why they keep saying we are still under 1% because our numbers locally yesterday were the highest since June. I thought when I went to the hospital I'd get answers but it was the strangest hospital experience. There is a local cancer center but they look to have all general cancer and not people focusing on one thing or another. I want to find someone who knows exactly what they are doing In the head and neck region. I imagine with Covid finding anyplace is going to be harder and I am not sure about going into the city.  I want more than anything to be here for my kids, husband, and mother. We just list my Grandma in April to Cancer- lung, leukemua, thyroid. lung And thyroid lit up on PET and she didn't want to biopsy. She had pre-leukemia that she was getting procrit shots for til Covid started. She also felt fine and her doctors chose to stop the shots and three weeks later. So my Mom will be devastated. She doesn't have much family left. I haven't called her in days because I'm afraid to let her know and worry her.  So my only goal is survival... if I have to remove every mirror from my view I will long as I can see my kids grow up. I go tomorrow for my CT scan. I also messaged my regular doctor and requested she rerun my CBC with differential the hospital did. Then my Neurophils were high (90.9% - normal 35-75) and my Lymphocytes were low (5.7- normal 16-52). I've been exhausted and got nothing done lately but figure if my body wants me to rest I should. Trying to hold it together for the kids but keep breaking down when I think of everything I'm going to miss and my husband is a wreck because he says he can't do it alone. It's terrifying. 

wbcgaruss said:

It Certainly

Doesn’t sound like you are getting proper attention here on your problems. I see you could not get scoped due to covid but that should have passed by now as far as scoping. Even if it did not someone here has to make an exception. I think you definitely need scoped so they are looking directly at the area where you are having problems. I would demand it or look till you find an ENT who will get serious about your problems and scope you.

I also don’t know why a CT scan with dye was not ordered earlier but you should have a CT Scan with dye of the head and neck area in my humble opinion.

I am surprised by the actions of the hospital doctor.

I have been through this stuff and they try antibiotics for infection then if that doesn’t work usually an ENT will scope you and whether they find anything for sure or sometimes not will get you a CT Scan with dye. If they find something definite they still want to see it on a ct scan as far as size etc. If they don’t find something with scoping a problem may show on scan.

Take Care-God Bless-Russ

I don't know in NY things have been pretty strict but the more people I talk to the more it seems other doctors figured it out. Just not my office. My doctors office decided to close shop and do telemedicine only. The ENT does tests to check for Covid prior to the scope so why she (ENT NP) had me wait over a month to see the ENT knowing it had been so long. Seems she could have had me get tested then schedule the scope right away It went right to a CT scan. Either would have been before the lymph node Popped out. If the ER doc listened and didn't blow me off afraid to come near me and ran a CT scan of my neck (how would it have hurt?) then I would be back four weeks ago with answers and on my way to hopefully some solutions. Instead I have a lymph node doubled in size that has me looking like Frankenstein.  Once I know more I plan to write the hospital a complaint letter. Not sure what good it will do but maybe they won't blow off the next patient who walks through the door.  

CivilMatt said:

Matt's 2 cents.

AC1179,

Welcome to the H&N forum, I am sorry that you find yourself here looking for answers. I wish you were out with the kids and your husband looking for a place to eat.  Eat safely that is, like we all used to do prior to this Covid-19 bomb dropped on all of us. Oh well,

I wanted to say that my cancer came a knocking with only one  swollen lymph node on my neck and no pain or sore throat whatsoever. I do not know what you have, but I hope it does not fit in here. You do not want to join this club, if you do not have to. BUT, if you do find the need to join and learn from our site and each of us then great and welcome aboard.

I would prefer that you have a PET scan, as it will show ALL areas of activity throughout your body, good and bad.  Remember, we have no secrets here.

See you around,

Matt

Added Saturday 10/10/20 (it is raining) They usedto say when getting a PET Scan  "eyes to the thighs" when they refered to the area of your body to be scanned. I don't know what they say today?

Thank you. I figured if it is Cancer if the head and neck region this is the place to give advice and to learn whether I am following along the correct path to answers.   I'm not confident in my ENT I saw. He read the radiology report which confirmed paralyzed vocal cord. it said there is a dilated right piriform sinus and that the right vocal cord is deviated medially. Also, an 8mm subcutaneous soft tissue density in the right retroauricular region abutting the parotid gland.  Radiology report says a sebascious cyst can have this appearance but suggested following up with ultrasound. He didn't tell me these specifics. I took a photo quick of the report on the chart as I walked out. he Said he doesn't think the cyst which he thinks is most likely benign has anything to do with the sore throat or paralyzed vocal cord. Says he has never seen a swollen gland from any cancers in the thyroid.  He said (after asking twice that he actually did do a nasal scope) that the nasal scope didn't show any masses.  He is going to do a CT of the chest because that is the other area to rule out with vocal cord paralysis. How quickly he scoped is it possible he missed seeing something?  The throat CT was without contrast. Could the lack of contrast allowed for something to be missed?  My doctor had the CT scan on the computer (disc) but he didn't seem to know how to actually look through the images.  I don't want to be sick. But I don't want to miss that I am and find out too late. There are just so many symptoms and I feel so run down and awful all the time.  I questioned how I can just have an unrelenting sore throat for 6 months and lose over twenty pounds (3 in the last week) and there be no reason on top of having a cyst form on my neck that is growing rapidly.  I asked about biopsying and he said it would be removing it because not knowing if it's in the node or not.   It's just too many symptoms to have no answers. He did say if he can't figure it out based on the Chest CT (seeing me back next week) he wants to refer me to the local Oncologists to review everything and make sure he isn't missing something. That gives me peace of mind knowing in the next couple weeks maybe a second set of eyes can figure it out. Thank you all for your advice and listening.  I cannot imagine the stress you have all been through and your strength amazes me. These past few days have been torture.  

Updating.  i went for the chest CT which my Dr/ENT said was fine but now wants to do a Thyroid study and when that comes back exporatory surgery at which point he will remove the node on my neck that is tripled in size in a month and a half and very painful. The ither side of my neck has become tender over the past week and my sore throat remains. I hurt all over my body and max out on daily Tylenol and Motrin with little to no relief. I could sleep all day if I didn't have four kids to care for. Which I am honestly doing a lousy job at. Thankfully they are pretty self sufficient and the older two can help their little sister. But we are supposed to be doing remote schooling and its a struggle to help my third grader navigate it all because I just don't have the energy and mentally can't follow all the in's and outs of it. The doctors offive hasn't called about the thyroid  study even though he wanted to see me back early next week. I called there and the scheduler says she sent a message to the dr because she isn't sure exactly what he wants ordered. I said well he wanted a thyroid study and to see me back early next week. She said it's not gonna happen. ?‍♀️  The plan prior to this appointment was once he had the chest ct to send me over to oncology to look over everything. Now he is doing this other test first when they get it scheduled. In the meantime I'm in horrible pain, exhausted, running low grade temps, having night sweats- which my husband got to witness when we were having a "pandemic date night" (at home, eat dinner alone in our room and watch a movie the older boys babysit their little sister). I fell asleep during the movie and woke up before the movie was over drenched in sweat. So I feel like I'm at a stand still. I feel horrible physically. Tired... I've thought about when my Grandma passed and she told me she was tired and ready. I feel like I get what she meant when she said tired. I am just never Rested and tired to my core.... but I'm not ready.  I jist want to know whu I feel so awful.  I did look at the CT scan report from my chest again. And this is the third time with this dr where he says it shows nothing then I read it did- it said : "Minimal posterior dependent atelectas and probable subpleural lymph node, right upper lobe. So another Lymph node to go with the one on my neck that is making me look like Frankenstein. It's all so frustrating. 

I can't find help. After waiting a couple weeks for the Thyroid study I go in today for it and they do the basic ultrasound then took me to Nuclear Medicine and say they can't do the Thyroid Study because two weeks ago I had Contrast in a CT.  I said well my ENT should have known that... they call my ENT'a office who tells them they had no idea I had a CT with Contrast. THEY ordered it!  I saw them weeks ago and the ENT half-assed read the results. Ignored the subpleural lyph node. now they just forgot they did one all together. I called my regular doctor who has been calling both Oncology places in the area and neither will see me without an official diagnosis. And the ENT appears to have blocked her from doing a referral. But I can't get a diagnosis from the ENT who can't remember things or Even me as a patient from appointment to appointment. ?. No one will follow all the way through to diagnose. They just space things weeks out and now I have no appointments about this what so ever. I feel awful, I have this growth by my ear that started weeks ago as a pea size lump and now it is olive size in the immediate area behind my ear but it extends around my ear front and back and into my neck deeper than I can feel. I have begged the ENT to biopsy and he wont and has blown me off.  So I think it's getting hopeless because there is no one to help. My GP is trying to get me seen but my ENT has roadblocks she keeps hitting.