So I am back with updates and what I have been going through.

cricketskid
cricketskid Member Posts: 25
in Head and Neck Cancer #1

SO I think my last post was talking about some of the symptoms I was having and the surgery that followed. But in case I didn't I will give a little breakdown.

 

In Feb I had mt tonsiles removed and my adnoys. My ENT (who I hate, and that is the nice way of saying that) said he got everything and all margins were clear.

Shortly after my "recovery" I started having trouble swallowing and choking. Followed by now months of salty foul tasting drainage from the "mass" I feel on the left side of my throat. ENT says all in my head.

I have a headache that will not go away, so I went back to my GP and he put me on antibiotics and nasil spray. Nothing worked. I went to the ER for the headache and she did a cbc and felt around on my neck and other lymp nodes she put me on more antibiotics. The ER doctor called me a week later and said she was worried about me. Which is strange I think. She said I need to see an ENT asap. I told her I would not go back to the local one but would try to see one that is 3 hours away. She said she would help and that she was going to call my GP and discuss some of my test results with him but I needed to sign a release. I did.

Two nights ago the roof of my mouth and my nose start peeling and bleeding so I head to my GP. Gp did another blood draw and stopped all antibiotics. Said my WBC count was not getting better with them.

GP then does an exam and says he now feels the mass and that he is sending me for a CT with and without contrast and a chest xray. Does a breast exam and orders a mamagram says I have suspisious lumps there as well.

I feel so tired all the time, but can't sleep due to the headache so he said he would give me something for sleep. Klonipin, I looked it up and it is for anxity so I called him and asked about that. He said it will help me sleep and will help me through the test to come.

He and the ER doctor called the ENT 3 hours away and told them it is urgent I get in to see him. So after the scans next week I will be scheduled with him.

He says that this is not all in my head and that he is sorry for me having to go through all of this. He said that the CT is expensive but if the results are as he and the ER doctor susspect then I will be able to apply for state help.

BTW the ER doctor did not do a CT when I went because I was worried about the bill and she saaid she understood, she did offer and almost insist but I refused. Hard headed I am.

OK so there is no spell check on this that I can find so PLEASE don't grade my paper. LOL

 

Comments

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #2
    The Bottom Line

    Hi Cricketskid,

    Wow, you've been through some "stuff" for sure! Some things weren't clear from your post. You had your tonsils andnoids removed and the ENT said the margins were clear. Were you diagnosed with oral cancer? They don't typically talk about "margins" with a tonsillectomy. What was the reason they were removed? I ask because, if it were to find cancer and they didn't (as in my case after biopsies were performed), the protocol would be radiation following surgery and possibly (and more often than not) concurrent chemo. 

    After reading your post,the bottom line is they have to get to find out what's going on!. I'm also reading between the lines that insurance may be an issue as $$$ is a concern. Getting a CAT scan or PET scan is part of the diagnostic tools used. Also, if you haven't done so already, being seen or getting a 2nd opinion at a CCC is important. CCC's see more cancer cases and are better equipped and staffed to handle difficult cases. They also have access to trials and techniques unavailable on a local level in many cases.

    Now, concerning the $$$. I speak from experience. If the hospital is public or a community hospital, they can't refuse treatment due to lack of insurance or money. The worst thing that can happen is you're unable to pay and have to file a bankruptcy. Having a bad credit rating is nothing compared to being 6 feet under so don't let the cost dissuade you from seeking the proper help. 

    Best wishes, positive thoughts and prayers

    "T"

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    staying positive

    cricketskid,

    I hope you can get this diagnosed soon so that treatments can be tailored to the problem(s).  It is unfortunate your former ENT was a downer, but it sounds like you made some headway with the emergency room doctor.

    I hope all remaining tests show that this is something minor.

    Matt

  • cricketskid
    cricketskid Member Posts: 25
    #4
    fishmanpa said:

    The Bottom Line

    Hi Cricketskid,

    Wow, you've been through some "stuff" for sure! Some things weren't clear from your post. You had your tonsils andnoids removed and the ENT said the margins were clear. Were you diagnosed with oral cancer? They don't typically talk about "margins" with a tonsillectomy. What was the reason they were removed? I ask because, if it were to find cancer and they didn't (as in my case after biopsies were performed), the protocol would be radiation following surgery and possibly (and more often than not) concurrent chemo. 

    After reading your post,the bottom line is they have to get to find out what's going on!. I'm also reading between the lines that insurance may be an issue as $$$ is a concern. Getting a CAT scan or PET scan is part of the diagnostic tools used. Also, if you haven't done so already, being seen or getting a 2nd opinion at a CCC is important. CCC's see more cancer cases and are better equipped and staffed to handle difficult cases. They also have access to trials and techniques unavailable on a local level in many cases.

    Now, concerning the $$$. I speak from experience. If the hospital is public or a community hospital, they can't refuse treatment due to lack of insurance or money. The worst thing that can happen is you're unable to pay and have to file a bankruptcy. Having a bad credit rating is nothing compared to being 6 feet under so don't let the cost dissuade you from seeking the proper help. 

    Best wishes, positive thoughts and prayers

    "T"

    Yes

    from what I understaand the tonsils were removed due to spots of concern. But as I said that ENT is horrible. His bedside manner was so bad, he once told me while doing a scope that if I did not stop gaging and chocking he would not be able to help me.

    I was scheduled to go back but did not due to his additude. That is why I am trying to get into another ENT three hours away. I have an appointment with him a month from now but my GP seems to think I can get in sooner after the CT results come back.

    Yes money is an issue, but my GP has said point blank " we took an oath, you will be cared for. If the CT comes back the way we expect you will be able to apply for medicade."

    What is a CCC?

    Thanks for the reply

  • cricketskid
    cricketskid Member Posts: 25
    #5
    CivilMatt said:

    staying positive

    cricketskid,

    I hope you can get this diagnosed soon so that treatments can be tailored to the problem(s).  It is unfortunate your former ENT was a downer, but it sounds like you made some headway with the emergency room doctor.

    I hope all remaining tests show that this is something minor.

    Matt

    Thank you

    I am hoping for something minor as well.

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #6
    cricketskid said:

    Yes

    from what I understaand the tonsils were removed due to spots of concern. But as I said that ENT is horrible. His bedside manner was so bad, he once told me while doing a scope that if I did not stop gaging and chocking he would not be able to help me.

    I was scheduled to go back but did not due to his additude. That is why I am trying to get into another ENT three hours away. I have an appointment with him a month from now but my GP seems to think I can get in sooner after the CT results come back.

    Yes money is an issue, but my GP has said point blank " we took an oath, you will be cared for. If the CT comes back the way we expect you will be able to apply for medicade."

    What is a CCC?

    Thanks for the reply

    CCC

    Comprehensive Cancer Center.  Usually tied to a teaching hospital, University.

  • cricketskid
    cricketskid Member Posts: 25
    #7
    KTeacher said:

    CCC

    Comprehensive Cancer Center.  Usually tied to a teaching hospital, University.

    Thanks

    for the info

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
    Hospitals

    Here is a list of the top rated hospitals specializing in cancer. If it comes down to it, at the very least seek a 2nd opinion before you make any final decisions.

    http://health.usnews.com/best-hospitals/rankings/cancer

    "T"

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    cricketskid said:

    Yes

    from what I understaand the tonsils were removed due to spots of concern. But as I said that ENT is horrible. His bedside manner was so bad, he once told me while doing a scope that if I did not stop gaging and chocking he would not be able to help me.

    I was scheduled to go back but did not due to his additude. That is why I am trying to get into another ENT three hours away. I have an appointment with him a month from now but my GP seems to think I can get in sooner after the CT results come back.

    Yes money is an issue, but my GP has said point blank " we took an oath, you will be cared for. If the CT comes back the way we expect you will be able to apply for medicade."

    What is a CCC?

    Thanks for the reply

    Now that I know where you're located...

    I KNOW you didn't see the same ENT as I did, even tho it's in the same office....I'm wondering if you saw the new guy (who has just come in the last few months.....or the other guy that StaceyE was going to...Dr. (can't spell his name).  Tho I've been in that office every month for the past year and a half, I have never laid eyes on either of them.....

    I'm here wishing I'd known we were in the same town when you first started posting, so we could make sure you got in to see Dr. O....he's a total sweetheart.

    I'm shocked that your Dr. was talking about "margins" without doing any scans whatsoever....you'd think he'd want to know what he's cutting into, wouldn't ya?

    p

  • cricketskid
    cricketskid Member Posts: 25
    #10
    phrannie51 said:

    Now that I know where you're located...

    I KNOW you didn't see the same ENT as I did, even tho it's in the same office....I'm wondering if you saw the new guy (who has just come in the last few months.....or the other guy that StaceyE was going to...Dr. (can't spell his name).  Tho I've been in that office every month for the past year and a half, I have never laid eyes on either of them.....

    I'm here wishing I'd known we were in the same town when you first started posting, so we could make sure you got in to see Dr. O....he's a total sweetheart.

    I'm shocked that your Dr. was talking about "margins" without doing any scans whatsoever....you'd think he'd want to know what he's cutting into, wouldn't ya?

    p

    from what I understand due to

    from what I understand due to my really bad gag reflex he did a scope while I was under. Not sure what else he did. Like I said I didn't like the guy from the get go. But in our area choice is limited. And I saw Dr O a little over a year ago for jaw pain and sore throat and due to his interaction with my mother I was not impressed. But maybe I am just picky. LOL

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #11
    cricketskid said:

    Yes

    from what I understaand the tonsils were removed due to spots of concern. But as I said that ENT is horrible. His bedside manner was so bad, he once told me while doing a scope that if I did not stop gaging and chocking he would not be able to help me.

    I was scheduled to go back but did not due to his additude. That is why I am trying to get into another ENT three hours away. I have an appointment with him a month from now but my GP seems to think I can get in sooner after the CT results come back.

    Yes money is an issue, but my GP has said point blank " we took an oath, you will be cared for. If the CT comes back the way we expect you will be able to apply for medicade."

    What is a CCC?

    Thanks for the reply

    Money

    was a huge issue for us as we have ZERO insurance.  Don't let that deter you from finding the absolute best care you can.  No one can put a price on your life :)  Our bills totaled about $165K and we had to apply for emergency Medicaid.  After battling with them, they are now paying everything but $18.5k  That's still a lot but we'll handle it one day. I was upfront with everyone about my financial situation and no one has harrassed me once.  I hope for the best results for you!!  Your ENT sounds a lot like my Rad Onc. !!  :(

  • robswife87
    robswife87 Member Posts: 209
    #12
    fishmanpa said:

    Hospitals

    Here is a list of the top rated hospitals specializing in cancer. If it comes down to it, at the very least seek a 2nd opinion before you make any final decisions.

    http://health.usnews.com/best-hospitals/rankings/cancer

    "T"

     

    PCIP Insurance

    Not sure what state you live in but here in Michigan we have a Pre-existing insurance and it just swtiched over to the Federally run PCIP. 

    It runs us about $300 a month for my husband. It will give you the list of pre-exisiting conditions to qualify. $300 a month is really not in the budget but neither was $200,000 and they say we do not qualify for Medicaid. Although my husband is not working, his employer "laid him off" so he is collecting unemployment. Between that and the piddly amount I make we make to much money.

  • jim and i
    jim and i Member Posts: 1,788 Member
    #13
    Get over that stubborness,

    Get over that stubborness, unless you use it to fight for your health. If this turns out to be C get a lawyer  and sue the pants off him. I don't believe in suing willy nilly but this man needs to learn a lesson. Praying for you,

    Debbie

  • hwt
    hwt Member Posts: 2,328 Member
    #14
    jim and i said:

    Get over that stubborness,

    Get over that stubborness, unless you use it to fight for your health. If this turns out to be C get a lawyer  and sue the pants off him. I don't believe in suing willy nilly but this man needs to learn a lesson. Praying for you,

    Debbie

    Financial Help

    I was at Mayo Clinic the other day and something prompted me to pick up a brochure titled "Financial Burden of Cancer", I am fortunate in that respect but have also read from others on this site about thier financial issues brought on by cancer. I picked up the brochure in hopes of sharing it to help others. It saddens me to know others have financial concerns to deal with as if cancer wasn't hard enough. Try calling 1-800-813-HOPE (4673). It is non-profit and says certain types of cancer even offer greater assistance with transportation and medications. For perscription help 1-888-477-2669 or another at 732-507-7400. For legal resources 1-866-the-clrc or 1-800-532-5274.

    Hopefully, this information will be helpful to you or someone else.  Prayers that your situation is not cancer and easily treatable.

    Candi 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Hi Cricketskid

    Wow girl sounds like you been on a roller coaster ride, but not to worry we all know where you are coming from.  I was very glad to see the ER doctor jump on this and help get you the appointment you need. I had found that not all doctors are the same; there are some who are still real doctors and are there to help people and not just for the money. I been through 5 ENT’s before I found the right one who cares about my problem and about helping me. I hope and pray that everything will be as good as it can be when you do the test. I know about the headaches I take Tramadol HCL 50Mg and aleve everyday for pain everywhere in my body mostly in the head. I hope your doctors get you the help you need for now it sounds like you have a good team who wants to get you the help you need.

     

    God Bless

    Hondo

  • cricketskid
    cricketskid Member Posts: 25
    #16
    Hondo said:

    Hi Cricketskid

    Wow girl sounds like you been on a roller coaster ride, but not to worry we all know where you are coming from.  I was very glad to see the ER doctor jump on this and help get you the appointment you need. I had found that not all doctors are the same; there are some who are still real doctors and are there to help people and not just for the money. I been through 5 ENT’s before I found the right one who cares about my problem and about helping me. I hope and pray that everything will be as good as it can be when you do the test. I know about the headaches I take Tramadol HCL 50Mg and aleve everyday for pain everywhere in my body mostly in the head. I hope your doctors get you the help you need for now it sounds like you have a good team who wants to get you the help you need.

     

    God Bless

    Hondo

    Thank you

    I thought he was putting me on Tramadol until I picked up my RX. This Kolonipin does help with the headache but it knocks me out and I am so groggy all day. After the CT tomorrow I think I will ask for something less doppy feeling.

    I spent most of the day yesterday in bed with a low grade fever. Fever gone now but my body is beat. You know if it is not the C word than I hope they can figure this out soon.

    Somethimes I choke so bad it scares me and my family.

    I just want to be healthy again.

  • cricketskid
    cricketskid Member Posts: 25
    #17
    So I got my call to confirm

    So I got my call to confirm my CT scans and x rays and mamagram. No biggy til she said please bring your tax forms from last year so I can sign up for WINGS and any other assistance I may need.

    I said I have NOT been diagnosed yet with cancer and I know WINGS is for cancer, my mother was going to sign up for it. She said my doctor put notes in the order that I will need it.

    So now, as if I wasn't already, I am scared.  This is my GP ordering the CT's and such and I will not see him again until a week after the scans. I am trying to get an appointment sooner but so far no good.

    Oh man am I so worried.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #18
    cricketskid said:

    So I got my call to confirm

    So I got my call to confirm my CT scans and x rays and mamagram. No biggy til she said please bring your tax forms from last year so I can sign up for WINGS and any other assistance I may need.

    I said I have NOT been diagnosed yet with cancer and I know WINGS is for cancer, my mother was going to sign up for it. She said my doctor put notes in the order that I will need it.

    So now, as if I wasn't already, I am scared.  This is my GP ordering the CT's and such and I will not see him again until a week after the scans. I am trying to get an appointment sooner but so far no good.

    Oh man am I so worried.

    Worry

    I know this is going to be a little hard but try not to worry, find something to keep your focus on beside this stuff. I know for me I find peace in praying, not for myself but for others. Just knowing that Jesus is watching over me gives me a feeling of calm within myself and the strength I need to make another day.

    I will be praying for you

    Hondo

     

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