Possible 3rd recurrence

taffinang
taffinang Member Posts: 18
edited March 2014 in Thyroid Cancer #1
Hi, I am posting here as this seems like my best place to go for advice. I had my first go round with thyroid cancer (pappillary) in 2001, at that time 2.2cm of the thyroid was cancerous and also all 7 lymphnodes they took out of my neck were too. Then in 2008 I went thru alot of crap to get diagnosed. I live in Wyo where they are not familiar with this type of cancer and there is only 1 endo in this whole state sigh. Anyways after the Dr. giving me a cat scan with dye instead of a nuc med test it took me till April of 2009 to get treated. The 1st time I had RA131 it was 100microcuries (unsure of spelling lol) and the second time it was 150 microcuries. In May of 2008 and Nov of 2008 there was an enlarged lymphnode under my collar bone, well I just had another cat scan last week and now that lymphnode has grown to 2.4cm and they saw what they called "another mass that was 13mm in size and rounded and susupicious". I went on Thur to see an ENT and he seems to be at a loss how to possibly even treat me. He is unsure if he can give me RA131 again so soon and he said I am almost at the dosage that tops the safe area after the last go round. I have alot of pain in the left side of my chest where those are, my levels of blood calcium, Vit D, and thyroid are all over the map, somehow I am managing to stay out of the seriously dangerous, send you to the hospital levels but I am feeling it. And now to top it all off I am scared and stuck with waiting, not even knowing if they can treat me or with what, sigh. Though I will say that the ENT is really concerned about the size of the enlarged lymphnode he just didn't seem to know what to do and wanted to consult some other docs. I hate this waiting and not knowing, and I am really scared this time. I mean I didn't even really get a year in remission this time and it seems like that lymphnode doesn't want to respond to treatment as it didn't seem to respond this last time I was radioactive. I guess what I am asking in the rambling message is does anyone have any advice for me? Should I be really scared this time? Usually I am pretty blase about it but this time I can't seem to get that mind set. And not having access to good Dr.s here worries me too, the first time I had cancer I was living in MI. I guess I will apologize for rambling but also say thank you for reading it and for any advice or help or support that you give.

Taffi

Comments

  • Marcy19
    Marcy19 Member Posts: 8
    #2
    3rd Recurrence
    Taffi,
    I can only say to you, if you are not feeling right about your medical treatment, then you should listen to your body and go somewhere else, if possible. None of us knows when or if cancer will come back. That's just what we live day to day with. Bit if something doesn't feel right then you need to do whatever you can in your power to get the best care that you can for you. Stay strong and remember not to give anything the POWER to take over you and your body. Believe and trust. Prayers are with you, Marcy
  • veronica57
    veronica57 Member Posts: 98
    #3
    Thyroid Cancer
    Taffi. I am feeling the same way you are. I was diagnosed in March, 2009 with papillary carcinoma. It had spread to my lymph nodes and into my lungs. I had surgery to remove my thyroid and the lymph nodes in April. I didn't get my first iodine treatment until July or August. They tell me that there is no more thyroid activity. But no-one is doing anything about the cancer that spread into my lungs. ER doctors tell me the nodules in my lungs are growing, and from records I've read, it shows that I have a nodule in my upper right lobe that has grown from 7mm to 13mm. But the doctors say, it has to grow more inorder to biopsy it. This worries me. I feel like I'm getting the run around. The doctors say, iodine is the only treatment for me. They don't want to give me chemo because they say it will make me sick. I've tried to get second opinions and realized I was still dealing with doctors within the same group. Sometimes, I feel like I'm getting tossed aside because of my insurance. I just don't know what to do anymore.
  • miladyx
    miladyx Member Posts: 85
    #4
    veronica57 said:

    Thyroid Cancer
    Taffi. I am feeling the same way you are. I was diagnosed in March, 2009 with papillary carcinoma. It had spread to my lymph nodes and into my lungs. I had surgery to remove my thyroid and the lymph nodes in April. I didn't get my first iodine treatment until July or August. They tell me that there is no more thyroid activity. But no-one is doing anything about the cancer that spread into my lungs. ER doctors tell me the nodules in my lungs are growing, and from records I've read, it shows that I have a nodule in my upper right lobe that has grown from 7mm to 13mm. But the doctors say, it has to grow more inorder to biopsy it. This worries me. I feel like I'm getting the run around. The doctors say, iodine is the only treatment for me. They don't want to give me chemo because they say it will make me sick. I've tried to get second opinions and realized I was still dealing with doctors within the same group. Sometimes, I feel like I'm getting tossed aside because of my insurance. I just don't know what to do anymore.

    veronica
    How old were u when diagnosed?
  • veronica57
    veronica57 Member Posts: 98
    #5
    miladyx said:

    veronica
    How old were u when diagnosed?

    miladyx
    I was 51 years old. I'm 52 now.
  • taffinang
    taffinang Member Posts: 18
    #6
    Marcy19 said:

    3rd Recurrence
    Taffi,
    I can only say to you, if you are not feeling right about your medical treatment, then you should listen to your body and go somewhere else, if possible. None of us knows when or if cancer will come back. That's just what we live day to day with. Bit if something doesn't feel right then you need to do whatever you can in your power to get the best care that you can for you. Stay strong and remember not to give anything the POWER to take over you and your body. Believe and trust. Prayers are with you, Marcy

    Here in Wyoming my options for both treatment and different Dr's is extremely limited. We only have on Endocrine in the whole state if that gives you an idea of how limited options are. I talked to the ENT's office today and I am scheduled for an uptake in July, I have to wait till then due to a cat scan with dye. I am sure its back as the lymphnode that was enlarged a wee bit over a year ago has gotten bigger and another mass has grown. And I do realize that reccurrences are something we have to live with day to day, I am guessing my message kinda rambled lol, basically I was just looking for someone who has been here before to chat with and yeah this time scares me, maybe its just cuz it would be my 3rd time going around with cancer and that I have only been in remission for a year now and the odds are really high its back. I thank you for your prayers and kind words and do apologize for my delay in response, been working and been really tired lol.

    Taffi
  • taffinang
    taffinang Member Posts: 18
    #7
    veronica57 said:

    Thyroid Cancer
    Taffi. I am feeling the same way you are. I was diagnosed in March, 2009 with papillary carcinoma. It had spread to my lymph nodes and into my lungs. I had surgery to remove my thyroid and the lymph nodes in April. I didn't get my first iodine treatment until July or August. They tell me that there is no more thyroid activity. But no-one is doing anything about the cancer that spread into my lungs. ER doctors tell me the nodules in my lungs are growing, and from records I've read, it shows that I have a nodule in my upper right lobe that has grown from 7mm to 13mm. But the doctors say, it has to grow more inorder to biopsy it. This worries me. I feel like I'm getting the run around. The doctors say, iodine is the only treatment for me. They don't want to give me chemo because they say it will make me sick. I've tried to get second opinions and realized I was still dealing with doctors within the same group. Sometimes, I feel like I'm getting tossed aside because of my insurance. I just don't know what to do anymore.

    I hope that you can find someone to help you, have you talked to anyone at a Cancer Treatment Center of America? I talked with them briefly and they seemed to be pretty familiar with this type of cancer, maybe that could be an option for you for a second opinion or treatment? I know how you are feeling about the run around, it is so frustrating. I have to wait till July for my nuc med scan to see what is going, I am just glad to at least finally get that far, lol. I just wish I could get on with treatment and get it over, I really wanted to be in remission for more than a year lol, but the odds are pretty high it is back again. This time they are having me go off my meds for a month before my nuc med scan, so loopyville here I come. I really am dreading the fog that I have coming, I hate the forgetfullness, all of it sigh. I know its necessary but it really sucks for the person going thru it lol. I hope you can figure out what is going on and find some sort of treatment. Take care and you are in my thoughts and I do apologize for the delay in responding but been working and been so tired.

    Taffi
  • grateful1
    grateful1 Member Posts: 80 Member
    #8
    taffinang said:

    I hope that you can find someone to help you, have you talked to anyone at a Cancer Treatment Center of America? I talked with them briefly and they seemed to be pretty familiar with this type of cancer, maybe that could be an option for you for a second opinion or treatment? I know how you are feeling about the run around, it is so frustrating. I have to wait till July for my nuc med scan to see what is going, I am just glad to at least finally get that far, lol. I just wish I could get on with treatment and get it over, I really wanted to be in remission for more than a year lol, but the odds are pretty high it is back again. This time they are having me go off my meds for a month before my nuc med scan, so loopyville here I come. I really am dreading the fog that I have coming, I hate the forgetfullness, all of it sigh. I know its necessary but it really sucks for the person going thru it lol. I hope you can figure out what is going on and find some sort of treatment. Take care and you are in my thoughts and I do apologize for the delay in responding but been working and been so tired.

    Taffi

    I HAVEN'T HAD A RECURRENCE--BUT I CAN'T GET RID OF THE FIRST TUMOR AND I FEEL AS THO I AM PLAYING A WAITING GAME. I WOULD GO FOR ANOTHER OPINION IF I WERE YOU EVEN IN ANOTHER STATE.YOU OWE THIS TO YOURSELF.
    I HAD A BIOSY IN FEB--NEEDLE-THAT CAME BACK MALIGNANT. I STARTED TAKING POLYMVA TO HELP MYSELF--A SUPPLEMENT IN SUZANNE SOMERS BOOK KNOCK OUT.
    MY DIAGNOSIS WAS POORLY DIFFERENTIATED-VERY AGRESSIVE-SOME THOUGHT IT COULD EVEN BE ANAPLASTIC. UGH.
    IN APRIL I UNDERWENT SURGERY FOR HOURS--THEY COULD NOT REMOVE THE TUMOR WITHUT HARMING ME-IT WAS TOO CLOSE TO THE AORTA, ETC. BUT THEN THEY DID A BIOPSY AT THE SAME TIME AND IT CAME BACK BENIGN TO THEIR SHCOK.
    I JUST FINISHED A STRICT IODINE FREE DIET FOR TWO WEEKS TO GO FOR IODINE TREATMENT--AND THE DOCTOR AT LOOKING AT MY RECORDS SAID HE NEEDED DISCS OF MY PET SCANS--I'VE HAD TWO. SO I WENT HOME WITH NO TREATMENT AND AM HAVING HIM SENT WHAT HE WANTS. SO NOW I AM JUST WAITING. IT HAS BEEN SIXMONTHS SINCE THE PAIN BEGAN AND I AM AM EAGER TO GET IT OVER WITH AS THEY SAY IT IS AGGRESSIVE AND COULD SPREAD..
  • nasher
    nasher Member Posts: 505 Member
    #9
    if you havent thyca.org is
    if you havent thyca.org is another good place to get info mabey they can find you a local support group as well.. worse case they can have someone you can call and talk to a human
  • butterfly123
    butterfly123 Member Posts: 52
    #10
    veronica57 said:

    Thyroid Cancer
    Taffi. I am feeling the same way you are. I was diagnosed in March, 2009 with papillary carcinoma. It had spread to my lymph nodes and into my lungs. I had surgery to remove my thyroid and the lymph nodes in April. I didn't get my first iodine treatment until July or August. They tell me that there is no more thyroid activity. But no-one is doing anything about the cancer that spread into my lungs. ER doctors tell me the nodules in my lungs are growing, and from records I've read, it shows that I have a nodule in my upper right lobe that has grown from 7mm to 13mm. But the doctors say, it has to grow more inorder to biopsy it. This worries me. I feel like I'm getting the run around. The doctors say, iodine is the only treatment for me. They don't want to give me chemo because they say it will make me sick. I've tried to get second opinions and realized I was still dealing with doctors within the same group. Sometimes, I feel like I'm getting tossed aside because of my insurance. I just don't know what to do anymore.

    RAI treatment???
    Veronica-
    Curious on why you are not having another RAI treatment? Maybe because it is in your lungs? Do you already know from previous RAI treatments that your lung nodule does not take up the RAI? Is your thyroglobulin rising? Sorry for all the questions.
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #11
    veronica57 said:

    Thyroid Cancer
    Taffi. I am feeling the same way you are. I was diagnosed in March, 2009 with papillary carcinoma. It had spread to my lymph nodes and into my lungs. I had surgery to remove my thyroid and the lymph nodes in April. I didn't get my first iodine treatment until July or August. They tell me that there is no more thyroid activity. But no-one is doing anything about the cancer that spread into my lungs. ER doctors tell me the nodules in my lungs are growing, and from records I've read, it shows that I have a nodule in my upper right lobe that has grown from 7mm to 13mm. But the doctors say, it has to grow more inorder to biopsy it. This worries me. I feel like I'm getting the run around. The doctors say, iodine is the only treatment for me. They don't want to give me chemo because they say it will make me sick. I've tried to get second opinions and realized I was still dealing with doctors within the same group. Sometimes, I feel like I'm getting tossed aside because of my insurance. I just don't know what to do anymore.

    DR may be waiting for nodule
    DR may be waiting for nodule to grow to 20mm (2cm or little less than an inch) but now that it is 13mm, they or another Dr can perform biopsy by fine needle aspiration, bronchoscopy or thoracoscopy.


    Patients with positive screening CT scans and/or x-rays were recommended to have standard-dose diagnostic CT scans for better delineation of the lesions. If the non-calcified nodules seen on screening were confirmed and were non-calcified on the diagnostic CT, further work-up was recommended, depending on the size (average of length and width) of the nodule:

    nodules 5 mm or less: follow up with high resolution CT scans at 3 mos, 6 mos, 12 mos and 24 mos as long as there was no growth.

    nodules 6-10 mm: if possible, CT guided fine needle aspiration biopsy or thoracoscopic biopsy; if not biopsied, CT follow up as for the smaller nodules.

    nodules greater than 10 mm: biopsy by fine needle aspiration, bronchoscopy or thoracoscopy.

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