Scared

At the end of February, I came down with a sore throat that never went away.  No fever. No Covid symptoms.  Mid-March we shut down here and my doctor went to telemedicine only. I had exchanges with my doctor every 3-4 weeks. We tried various antibiotics, allergy medication, nasal spray and I have minor Crohn's so I religiously took my medication in case that was causing problems in my throat.  I also felt run down, my breathing feels scratchy and painful and between March and May  I lost 17 lbs without trying.  I have since lost 6 more.  She did basic bloodwork (drawn in a parking garage) and said it looked ok.  I did a Covid antibody to be sure and it was negative. All telemedicine from March to july was email or by phone. No video or images. Eventually did a Covid antibody test, negative.  My throat continued to hurt.

In June she said I need to see a ENT. I got in there in July and saw the ENT NP. She said I had cobblestoning and she would scope me but couldn't due to Covid. She scheduled a Barrium Swallow and gave me a month of Nexium to try. I had the BS done and they called and canceled my in person follow up and she did a telehealth and said I should maybe see GI because barium swallow was normal. I told her Zi didn't want to wait months to get into another specialist I needed to get to the bottom of this. She scheduled me with the dr.

In the meantime I discovered the I have a swollen gland behind my right earlobe. Soon after this I started to run a fever one morning (a few days after the BS), my urine was tea colored.  I went to the ER since I had sepsis three years ago and they diagnosed me via bloodwork and urinalysis with early sepsis from UTI. IG antibiotics overnight and home. The 1st ER doc did a Comprehensive metabolic panel that showed my white Blood cells had one high and one low (can't remember which). The admitting doc never ran it again just did a basic blood count. I told him about the 6 mo long sore throat, scratchy painful breathing, 20+ lb weight loss without trying, and swollen gland... my voice is also scratchy.  (he wasn't certain about the UTI).  He said "I am not going to concern myself with that take it up with your ENT when you go back in a few weeks" (the swollen gland was new and alarming especially with a fever and high lactic and wbc). The doctor barely crossed into the room. He quickly pressed my abdomen and retreated back to the doorway. Never listened to my lungs, looked at the lymph nodes or anything. No exam. 

Back home the ENT calls and tries to cancel and reschedule to December. I tell her I have had this 6 mo I can not be without healthcare anymore I need help. I have begged for help from everyone. The secretary tells me she is sorry for the inconvenienc. I told her to tell my four kids that when I'm dead. At this point I didn't really think that.... maybe deep down I did. She called back five minutes later with an appointment with the other ENT for the following week (this past week). I have seen him before. A lot. He had been treating me all before Covid for the past year for severe TMJ. I couldnt open my jaw more than 20 mm for almost a year.  The right side TMJ.  

This week I went for my appointment.  My, Parotid Gland he tells me, it is now double  the size it was when I first noticed it three weeks ago.  i had a Covid test a few days before so he could scope me and he said my right vocal cord is paralyzed.  i have to go Tuesday for a CT.  Wednesday I go back to see him.  It all feels like an eternity away.  I know it's wrong to google but 6+ months with no healthcare options left me no choice and I sm pretty sure I have most of the signs of laryngeal cancer.  I have never smoked and drink maybe a glass a wine a few times a year.  

I'm terrified. I'm 40. I have four kids who need me And I'm not ready to leave them. my Boys are 14, 12, 8... my daughter is only 4. I waited so long for her. Half her life I've been sick. The sepsis took slot to recover from and now this the past 6 mo and now who knows if I'll even be here for her. I am so scared and so mad that no doctors would help when I asked so many tines. I understand Covid but she tested me she knew Icwas negative. She could have them seen me. I was quarantined the whole time, had groceries delicwred, wiped them down before they came in the house. I've been careful. My entire family has and continue to be. 

 

 

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Comments

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    edited September 2020 #2
    Dear Scared,

    I am very glad you're actively working to get the medical attention you need!

    It's always tough not to worry, but with Cancer - you really want to wait for the results of your CT scan (then potentially a biopsy).

    Until you get that, there are probably dozens of other possibilities, some of which are likely not too serious.

    Whatever it ends up being, you will be able to get through it - like everyone on this site has done!

    I wish you all the best, and hope you have the best possible outcome...

    Hang in there,

    MG

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    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

  • Logan51
    Logan51 Member Posts: 464 Member
    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.

  • AC1179
    AC1179 Member Posts: 30
    edited September 2020 #5
    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

    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. 

  • AC1179
    AC1179 Member Posts: 30
    edited September 2020 #6

    Dear Scared,

    I am very glad you're actively working to get the medical attention you need!

    It's always tough not to worry, but with Cancer - you really want to wait for the results of your CT scan (then potentially a biopsy).

    Until you get that, there are probably dozens of other possibilities, some of which are likely not too serious.

    Whatever it ends up being, you will be able to get through it - like everyone on this site has done!

    I wish you all the best, and hope you have the best possible outcome...

    Hang in there,

    MG

    Thank you. 

    Thank you. 

  • AC1179
    AC1179 Member Posts: 30
    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

    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.  

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited September 2020 #8
    AC1179 said:

    I don't know in NY things

    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.  

    In My Case

    I too had a lymph node problem. I had soreness on the side of my neck. My ENT ordered a CT scan. It came back showing I assume swollen Lymph node and most likely cancer. I had a biopsy done and cancer was confirmed. My local ENT did not want to operate here as it had left the lymph node and was not encapsulated anymore. He sent me to a teaching hospital. They operated and found out for sure that it was no longer encapsulated anymore and had spread out. I had cancer in ONE node but due to spreading they had a more extensive operation. It was wrapped around my carotid artery and I guess muscle somewhere because they told me they were lucky to be able to peel it off the carotid artery but had to take some muscle and other tissue. These days I can't lift my arm up to the side more than about halfway because of it. The chyle valve in the lymph system was also damaged.

    The reason I am saying all this is that if you have a lymph node that has doubled in size you need immediate attention before it becomes not capsulated anymore in the lymph node like mine and starts spreading to the surrounding area, muscles, etc.

    Again they need to do something ASAP as it is only going to get bigger and probably will start spreading to surrounding muscle, tissue, lymph nodes sooner or later.

    They found mine a little late as I think it was already out of the lymph node when I noticed a sore neck because treatment was prompt.

    Take Care-God Bless

  • PipLily
    PipLily Member Posts: 127 Member
    AC1179 said:

    I live in Central NY. We've

    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. 

    Deep breath AC.....

    My heart goes out to you as I know how horrible and dark it feels when the mind spins with every scary outcome we can imagine. And waiting on answers is so difficult. Your CT is tomorrow, and that is good. You will get a lot of information from that, and know what next step needs to be taken. So deep breaths until tomorrow, then reassess where you’re at. Not trying to instill any false hope, but truly, with elevated Neutrophils, maybe you have some type of infection. And if it’s something more, I would encourage you to find a Cancer Center that has a designated Head and Neck center, or whatever type......you want them to be very focused on that specialty for you with a high number of patients treated yearly. But first things first....CT Scan tomorrow, then.....

     I understand your husband’s fear. My husband was diagnosed this past January, and I felt as if the world had stopped. I felt a dark cloud over us, I couldn’t sleep or eat. But you know what? Here we are.....he completed treatment in June and is doing amazing!!! One thing at a time, one day at a time, one hour at a time if needed.......you both will get through this. Waiting on answers is the hardest, hardest part. Because our mind creates all sorts of scenarios. 

    Peace, as much as can be, to you tonight. Let us know how it goes. 

    Prayers, 

    elizabeth

  • AC1179
    AC1179 Member Posts: 30
    PipLily said:

    Deep breath AC.....

    My heart goes out to you as I know how horrible and dark it feels when the mind spins with every scary outcome we can imagine. And waiting on answers is so difficult. Your CT is tomorrow, and that is good. You will get a lot of information from that, and know what next step needs to be taken. So deep breaths until tomorrow, then reassess where you’re at. Not trying to instill any false hope, but truly, with elevated Neutrophils, maybe you have some type of infection. And if it’s something more, I would encourage you to find a Cancer Center that has a designated Head and Neck center, or whatever type......you want them to be very focused on that specialty for you with a high number of patients treated yearly. But first things first....CT Scan tomorrow, then.....

     I understand your husband’s fear. My husband was diagnosed this past January, and I felt as if the world had stopped. I felt a dark cloud over us, I couldn’t sleep or eat. But you know what? Here we are.....he completed treatment in June and is doing amazing!!! One thing at a time, one day at a time, one hour at a time if needed.......you both will get through this. Waiting on answers is the hardest, hardest part. Because our mind creates all sorts of scenarios. 

    Peace, as much as can be, to you tonight. Let us know how it goes. 

    Prayers, 

    elizabeth

    Thank you. I'm glad your

    Thank you. I'm glad your husband is doing well.  I has the CT scan and the tech seemed to know about all my symptoms ahead of time and asked if I had surgery scheduled. I told her no- just a follow up. I looked at the images on the disk but haven't a clue what I'm looking at.  Tomorrow I should have some new labwork back my regular dr had drawn (in a parking garage) and I meet back up with the ENT

  • AC1179
    AC1179 Member Posts: 30
    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

    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.  

  • Logan51
    Logan51 Member Posts: 464 Member
    Yep

    Matt is right about the PET scan, which is always followed by a CT. An ENT or Oncologist can order you having one. All a PET does is show what reacts to sugared water, basically, which C does; so, showing C is all a PET is for. Seeing an Oncologist just might be what you really need to do. Best of luck, AC.

  • erinmcmi
    erinmcmi Member Posts: 9 Member
    edited September 2020 #13
    AC...NCI designated cancer

    AC...NCI designated cancer centers have specialists in head and neck cancer. I was treated at Fox Chase in Philly. Penn is another one. 

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited September 2020 #14
    Keep pushing, No one knows

    Keep pushing, No one knows your body like you do.

     

    But, BREATHE - the panic is not good for you, Breathe

  • AC1179
    AC1179 Member Posts: 30
    Updating.  i went for the

    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. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    I Would Continue

    To bug them every day or every other day. Your family needs you but they need you well. it's not gonna happen doesn't sound like a good answer a better answer is we will find an opening and call you as soon as we have one. Unless I'm reading this wrong. You have a lump on your neck that tripled in size in a month and you are in unbearable pain. Maybe see a different doctor or an Emergency room check-in to get someone to be serious about it. Your condition doesn't seem like something to be taken lightly. Take Care-God Bless-Russ

  • AC1179
    AC1179 Member Posts: 30
    edited October 2020 #17
    Update

    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. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited October 2020 #18
    It Is Time

    I agree with ERoman0 it is time to get some action from someone sincere about your situation. You say "My GP is trying to get me seen but my ENT has roadblocks she keeps hitting. She should find a way to beat that and go around your ENT there should be no way a doctor (Your ENT) can interfere with someone (You) seeking treatment at another doctor. That is absolutely unethical. If your GP family doctor will not advocate for you check for a good rated ENT in the area and make your own appointment and when you see them they can get your health records if needed. Your lump continues to grow don't wait any longer-Take Care-God Bless-Russ

  • ERomanO
    ERomanO Member Posts: 317 Member
    I'm sorry to read about your

    I'm sorry to read about your healthcare struggles.  You say you're afraid of going into the city, but if you feel you aren't getting proper care then it may be time (maybe past time???) to go somewhere else.

  • AC1179
    AC1179 Member Posts: 30
    Ultrasound report

    I had my reports sent to the University of Rochester. Hopefully I can get in there but am doubtful because the ultrasound report that came in on the patient portal at the hospital seems to show things as small. 

    My left thyroid lobe is shorter than it should be - right is 4.1x1.1x1.3 cm.  Left is 2.5x1.1x1.3 cm. In looking it should be between 4-6 cm. 

    The CT had my lymph node with the parotid gland. Ultrasound showed 

    -right well defined reniform Hypoechoic periaurucular lymph node with normal flow 0.9x0.4x0.8 cm 

    -right cutaneous periauricular heterogenous complex solid Hypoechoic Lesion with peripheral vascular flow, posterior wall enhancement, and through transmission.  1.3x1.1x1.3 cm
    says may correlate clinically 

     

    -Nodule on right thyroid, solid, hyperechoic, with ill-defined margins. 0.8x0.3x0.4cm  (labeled. Tr3) 

     

    The ENT's nurse finally contacted me after I got to speak to someone other than scheduler. He wants to see me Monday.  

    According to the ultrasound report the node is small enough where no fine needle biopsy is indicated yet. But I feel awful. my throat has been hurting 8 months, my breathing is irritated like a resporatory infection feels, I've lost over 25 lbs, night sweats, low grade fevers, almost flu-like aching all over, itching all over that I have to take allergy meds at bed to take the edge off, and I have a paralyzed vocal cord. So even though the findings seem small in size, the symptoms I have have been having a tremendous effect on my daily life. I accomplish nothing because I feel unwell (understatement).  I am worried he is going to tell me to just wait it out and monitor the thyroid nodule and lymph nodes and I am going to go on feeling lousy til they grow more to a size they find worthy to look into.  I just want to stop feeling awful everyday and feel like I can do things with my children who are growing way too fast. Instead I have apparently tiny things causing me to feel like complete garbage.  

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    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?