Dumb Question

MitchellM
MitchellM Member Posts: 48
in Head and Neck Cancer #1

I know I have created several threads, with the last one mentioning that it would be my last thread, but I am just really confused and looking for help. As noted in previous threads, I have had multiple biopsy completed for a spot on my lip that I was concerned about. First biopsy was completed early August and just had a second biopsy that I am looking to have back in the next week or so. Also had a fine needle biopsy completed October 2nd for a lymph node that popped up and did not respond to antibiotics. The thing hasn't grown, but is hard and doesn't hurt. From the onset, I thought something was off and have done my own research as to different signs and symptoms and one of things that startled me was a presentation that I found that noted how buccal mucosa cancer travels via lymphatic system. It stated the following:

- Submandibular & upper deep cervical involved (that is where the one lymph node is, that I had FNA biopsied on October 2nd)

- Initially mobile - hard and nodular

- Later fixed to deeper structure

- Infiltrate into hypoglossal nerve

- Infiltrate into spinal accessory nerve (noticed about a week ago that my right side trap muscle has atrophied and now my whole neck feels like fat and no muscle at all, can tell something is wrong because I just got the chills across my body, except for the neck and back area on my right side)

- Cervical Sympathetic Chain - Horners Syndrome (began developing last week as well; small pupil, droopy eyelid, etc - also noted a pain in my back that is related to this last week)

- Compression on External carotid artery

 

So my question is, with all the tell-tale signs - including facial paralysis on the right side as well, how can this be missed? I honestly don't get it. In this time frame, I have had 2 CT Scans and an MRI. Wouldn't you think 2x CT scans, Incisional Biopsy, Lymph node Biopsy, and MRI would pick up something remotely funny? Additionally, does this seem like it is moving way too fast? Is 10 weeks after noticing the ulcer long enough for all these symptoms to occur, or do you think there is something else going on? The only weird thing that has been discovered at all is that my ENT did a scope and he noted that my Eustachian tube wasn't closing properly. Not sure if that is due to nerve involvement of the tumor, or what. Again, would think this would be picked up on the MRI, but what do I know.

I have an appointment scheduled with an oncologist and neurologist on Monday, but it seems like I am just deteriorating so quickly, those won't even matter. For what it is worth, my MRI which stated what I was experiencing had the following dictation:

"No acute abnormality is seen in the visualized portion of the brain. No abnormal marrow signal is seen in the visualized osseous structures in the neck. Mild mucosal thickening is seen in the ethmoid sinuses. Mastoid air cells are clear. No mass is seen in the orbits, cavernous sinuses, pterygopalatine fossae, retropharynx, parotid glands, palatine tonsils, tongue, submandibular glands, and thyroid. Epiglottis has normal thickness. Piriform sinuses are patent."

Also, "No mass, fluid collection, or adenopathy is seen in the Neck. No cystic or necrotic cervical lymph node is seen. No cellulitis or abscess is seen in the neck."

 

My whole theory is there is some sort of perineural invasion going on and being missed by the doctors, as I know this is hard to detect for radiologist and would explain several of my symptoms, but how would y'all go about confirming this or even getting someone to look for this? Doctors seem to be so put off the second you try to explain what you think is going on in your body. Again, I am in desperation mode. Sorry for the ramble.

Comments

  • MitchellM
    MitchellM Member Posts: 48
    #2
    Failed to mention that I also

    Failed to mention that I also have hearing loss in my right ear as well. Very sad and confused, feel like everything is happening so quick.

  • caregiver wife
    caregiver wife Member Posts: 234
    #3
    Putting on my "Grandma Hat"

    Mitchell,

    I am going to talk to you as if you were one of my own.  Firstly, cancer does not grow nearly as quickly as people would believe.  It has often been lingering for YEARS before it it discovered, hence the age of persons usually being older (over 50).  From reading your posts, you self diagnosed the worst possible cause.  You are only going to doctors looking for a cancer diagnosis.  You have obviously been searching the internet.  I did a quick search and found a list of 33 medical conditions that could be causing the symptoms you have described.

    I would suggest you see a good Internist (they have more traing than a general practitioner)  as what the internet tells me is there are SEVERAL different infections that could be causing all your symptoms.  It well may take some trial and error to find a good solution.  Cancer, at least for now has been ruled out.  You need to be looking elsewhere.  

    Most people here will tell you, "you don't have cancer until they tell you You Have Cancer".  Medicine is far from being the exact science we would like to believe.  Treating an individual is not about statistics.  Diagnosis is often more Art than Science.  We are not doctors here, only cancer survivors.  

    So, Very Sad and Confused, this is GRANDMA telling you what you need to do.  Let us know how it turns out.

    Truly wishing you the very best,

    Crystal

  • wmc
    wmc Member Posts: 1,804
    #4
    Not sure how to answer...........

    AS most everyone has said you need to see an ENT.   You say you have a sore or infection on your lip or just inside. When you have infections the lymph system will fight it and more often than not, a lymph gland will get larger and often hard. I had one removed at 14 because it was hard. It fought the infection and just stopped working right. They removed it and no one ever thought of cancer. It just stopped working right. Never had a thought or problem again. 

    Now I am no doctor or even medically trained. [ well I was trained by my surgeon so I could care for having my voice removed] My best advice is to stay off the internet searching for symptoms.  Also never believe the Odds for survival. Those are so far off it is scary. Going to surgery for the exact size and place my tumor was, They gave me 36%. Now I was only stage 3 after surgery so it went to 53%, but the year before it was 63% from the same site. When they took my larynx the cancer was removed, and everything even near it, yet they say 53% to live 5 years. Only 5 people believed I would survive the surgery even, as I was gray in color and coughing a lot or blood.  Now I did a lot of research and read many studies and talked with my surgeon. He and I both guess my true odds are better than 85% or higher. I will not die from my throat cancer. My lungs are bad and I have COPD, but I am breathing better even.  You don't have Cancer, until a doctor tells you that you do.

    Stop using any tobacco products. Now. You don't want to be like me and breath out my neck. I know way too many that have lost part of and several lost all of there tongue because of tobacco and cancer. The choice is yours.  Just live your life and you can gargle with salt water to help any infection in your mouth. If you have already been seen by an ENT and they said you were ok, then enjoy your life.   If you want to see what tobacco did to me? Click on my photo and go to Expressions. The ones in blue, many have photos showing what they had to do.  

     

  • swopoe
    swopoe Member Posts: 492
    #5
    if you don't have cancer, you

    if you don't have cancer, you don't have cancer. You are lucky.

    my husband did have perineural invasion with his cancer, but he had absolutely no symptoms of it. It was only discovered after surgery to remove his tumor when they were looking at slides for the final report. 

    He also had one very large, hard and swollen lymph node in his right side (same side as the cancer). It was not cancer. It was his immune system trying hard to fight off the cancer. The node was simply reactive- it was removed anyway during surgery and shown not to be cancerous.

    google is never your friend. I learned that from this board. listen to the wise people here. Best to you.

  • MitchellM
    MitchellM Member Posts: 48
    edited October 2017 #6
    I apologize everyone, my post

    I apologize everyone, my post were completely self-serving and not considerate of all those that use this board. I do not know the pain y'all are going through and am truly embarrassed by my frantic post. I will stay off the board from this point forward, good luck to all those that are fighting and god bless.

  • lorijeannj
    lorijeannj Member Posts: 56 Member
    #7
    Try getting an appointment

    Try getting an appointment with an infectious disease doctor.  Perhaps they can run some tests as well.  Keep us posted.

  • SuzJ
    SuzJ Member Posts: 446 Member
    edited October 2017 #8
    Mitchell

    Do NOT stay off this board

     

    This is the sanest place to be, on the other hand stay off Dr Google and Dr Bing!

     

    We all did it, all of us (its how we got her) I confess the first thing I did was google it.. followed by looking up the mortality rates, then crying my eyes out.

     

    Yet here I am, radiation, chemo and surgery later, and I'm ok!

     

    Again - STAY OFF THE INTERNET - you will drive yourself nuts.

  • Sinus2016
    Sinus2016 Member Posts: 36
    #9
    Consultatoin

    Maybe it’s time to seek advice from a phsycolgist.  You may find it helpful having someone that specializes in trauma/ cancer to discuss and they may have recommendations.  It’s nothing to be ashamed of and it will definitely help with the anxiety.

  • Curlyn
    Curlyn Member Posts: 189
    #10
    Hi Mitchel, I had many

    Hi Mitchel, I had many inconclusive biopsies, and it wasn't until the SA nerve was affected and I began to see changes, that it was felt more was going on. I, too, had node that antibiotics didn't help or change. CT showed nothing suspcious. So long story short, when I finally had surgery, the cancer had spread everywhere and many structures required removal. Ki wish I had insisted on taking the entire node out for excesion biopsy. My course of treatment would have been entirely different. I am not trying to scare you but you know your body best. I also went to gym every day and was muscled and healthy looking ( what I kept being told). Did I miss it or did they do complete excision biopsy?

  • MitchellM
    MitchellM Member Posts: 48
    #11
    Finally, after 3 months of

    Finally, after 3 months of trying to fiugre out what is going on, I believe I have my answer it is what I fear. I completed a PET/CT Scan this morning and my ENT called me late this evening asking for me to come in first thing tomorrow morning. Sadly, I know what this means, as the symptoms have continued to progress over the last few weeks and when asked for details, tehy told me they wanted to discuss in the office. I just hope it isn't too late for treatment.

  • MitchellM
    MitchellM Member Posts: 48
    #12
    Curlyn said:

    Hi Mitchel, I had many

    Hi Mitchel, I had many inconclusive biopsies, and it wasn't until the SA nerve was affected and I began to see changes, that it was felt more was going on. I, too, had node that antibiotics didn't help or change. CT showed nothing suspcious. So long story short, when I finally had surgery, the cancer had spread everywhere and many structures required removal. Ki wish I had insisted on taking the entire node out for excesion biopsy. My course of treatment would have been entirely different. I am not trying to scare you but you know your body best. I also went to gym every day and was muscled and healthy looking ( what I kept being told). Did I miss it or did they do complete excision biopsy?

    Hi Curlyn - 

    Hi Curlyn - 

    The original ulcer was completely removed and biopsied, then it was biopsied two more times. As for the lymphnode, this was just a fine needle biopsy, about a month ago (10/4).

  • swopoe
    swopoe Member Posts: 492
    edited November 2017 #13
    Sorry, Mitchell. Keep your

    Sorry, Mitchell. Keep your chin up, and let us know what the doc says. We are here for you!

  • Mom68
    Mom68 Member Posts: 108 Member
    #14
    ??

    Hi MitchellM! What did your doctor say? I've been reading your posts, and want to emphasize what others here have said...feel free to post here, no matter what the outcome. Dr Google and Dr Bing are not good doctors. I think we should all fire them. Smile

    Please keep us posted. Warmest Regards, Mary

  • BlacksuitDC
    BlacksuitDC Member Posts: 18
    #15
    DITTO

    Same thing happened with me.  All the doctors/lab techs 'missed it.  Misread the CT results, etc.  Mine was the 'perfect storm'. It took MD Anderson, Houston, TX  reading the same CT results to get it right. MDA cured me.  I would have died. My local ENT doctor called me his 'dizzy blonde' and said I must be more patient for my 'vertigo" to rebalance iitself...that it would take a year.  It wasn't vertigo, it was a cancer tumor carving out room to grow. Stay after them. Get a better doctor.  I also was talked down to for daring to tell them how to do their 'job'. These were doctors in Laguna Beach & Newport Beach, CA and the 'golden boys' of UCLA Medical Center. Best of luck. Stay on it. Good doctors are hard to find. Most are not good.  Just doing enought to pay their bills. 

  • MitchellM
    MitchellM Member Posts: 48
    #16
    swopoe said:

    Sorry, Mitchell. Keep your

    Sorry, Mitchell. Keep your chin up, and let us know what the doc says. We are here for you!

    Thanks guys. I have begun

    Thanks guys. I have begun gathering all of my test over the last couple of months and sending them down to MDAnderson. I am scheduled to meet with the doctor on November 28th. PET came back with some lighting up in the neck and head. The radiologist didn't think it was cancer, as the max SUV was like 2.5 or something, honestly having a hard time remembering everything at this point. The lymphnodes on my right side lit up more than the ones on my left, but again the doctor didn't seem too worried??? Condition continues to worse, as the Horner's syndrome is in full effect and I have a horrible right-sided head ache all the time. Also have blood-shot eyes 24/7. I had an MRA completed to determine whether I was having a Carotid Artery Dissection and that came back well. If I can make it to the 28th, I am really looking forward to getting in MDAnderson's hands. I finally saw the lymphnode result from last month and it read, "Negative for Malignant Cells. Specimen consist of a mixed lymphoid population with reactive features; correlate with physical exam and clinical findings."

    So, again, things are coming back fine and I am really appreciative of that. I just continue to feel like **** and it gets worse on a daily basis. Hoping MD can figure this out in a couple weeks.

    Also, I hope everyone is getting through their treatments well. Thanks again for the feedback provided. God Bless.

  • MitchellM
    MitchellM Member Posts: 48
    #17
    ulcer has returned and

    ulcer has returned and completely pushed through the scar tissue and returned. Hoping that I’ll be able to make it to MD Anderson in time. 

  • JBBW
    JBBW Member Posts: 30
    #18
    cancer

    I welcome your question here.  You were wondering if someone here had a similar experience.  If this isn't the place to ask a cancer patient a question about there sickness then where should it be asked?  Is there a forum for people who have been told they don't have cancer but need to ask a cancer patient a question? 

    I hope you get your answers.  I don't have any experience that would help.

  • MitchellM
    MitchellM Member Posts: 48
    #19
    Testing Results

    Hi Guys -

     

    It has been a whirlwind of a couple of weeks. I went down to MDAnderson on the 28th and they took one look at me, read through my scans, then sent me back home. They called me the next day to have me come back down and complete an MRI of the Base of Skull the following week. Those results came back good, but I was still feeling off. Many had suggested that it was anxiety, which I think played a factor into it, but I am finally headed down a path that I hope shows some promise. 

    Even with all the doctors telling me everything was ok, I decided to have another oral surgeon perform a biopsy. He took out the previous ulcer and 15 or so salivary glands. Turns out these glands showed something called sclerosing sialadenits. My oral surgeon believes that I have an autoimmune disease, centered around something called Ig4, and am now in the process of getting things set up with an immunologist. I beleive someone above mentioned that I should see an immunologist a while back and I should've heeded that advice.

    That's all for now, thanks again for everyone's feedback - it has been truly helpful.

     

    Hope you have a great holiday season.

  • caregiver wife
    caregiver wife Member Posts: 234
    #20
    That should get you written up in the medical journals!

    No wonder it took so long to get a diagnosis!  Glad you are finally on the road to recovery!

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #21
    MitchellM said:

    Testing Results

    Hi Guys -

     

    It has been a whirlwind of a couple of weeks. I went down to MDAnderson on the 28th and they took one look at me, read through my scans, then sent me back home. They called me the next day to have me come back down and complete an MRI of the Base of Skull the following week. Those results came back good, but I was still feeling off. Many had suggested that it was anxiety, which I think played a factor into it, but I am finally headed down a path that I hope shows some promise. 

    Even with all the doctors telling me everything was ok, I decided to have another oral surgeon perform a biopsy. He took out the previous ulcer and 15 or so salivary glands. Turns out these glands showed something called sclerosing sialadenits. My oral surgeon believes that I have an autoimmune disease, centered around something called Ig4, and am now in the process of getting things set up with an immunologist. I beleive someone above mentioned that I should see an immunologist a while back and I should've heeded that advice.

    That's all for now, thanks again for everyone's feedback - it has been truly helpful.

     

    Hope you have a great holiday season.

    Glad you finally have some answers!

    Laughing

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