what's next after 3 surgeries and 4 RAI treatments and still have cancer

virjinia
virjinia Member Posts: 2
edited March 2014 in Thyroid Cancer #1
Hi, I'm 26 and was diagnosed with papillary thyroid cancer when I was 17. I had a TT then 2 more surgeries followed to remove tumors that kept coming back. I have also had 4 RAI iodine treatments and I still have cancer. Doctors are not really telling me whats next but they are telling me I've had my max of radiation and I just have to wait. Wait for what I don't know. They said that if I get more radiation I have a good chance of possibly developing leukemia or another type of cancer. I'm wondering if there's anyone out there who has gone through the same situation who can tell me what they have done.

Comments

  • miladyx
    miladyx Member Posts: 85
    #2
    i am sorry you are going through this...
    Hello -

    How is it determined that you have more cancer? Is it showing on the scans or just through elevated thyroglobulin?

    If something is showing on scans they might remove it via surgery and if not they might wait for it to grow a bit so they can remove it.
    Has your cancer been only in your neck?
  • mainstreet39154
    mainstreet39154 Member Posts: 8
    #3
    where are you being treated?
    where are you being treated? I'm sorry you are dealing with this and so many unanswered questions. I strongly believe in 2nd opinions. You may want to consider a cancer hospital if you have not already done so. They treat it everyday and can give you much more information because they understand it and talk the language daily. Other endos just see it from time to time and it is not their daily focus. Just my 2 cents worth. Best wishes!
  • LaGrange56
    LaGrange56 Member Posts: 2
    #4
    4 surgeries, 4 RAI's
    Hi, I'm very sorry you're going through this and am new to site so just saw your old post. What's the latest? I've also had 2 surgeries, 2 large doses or RAI (422 Mci, I think all together) and now have a recurrence somewhere, possibly in lungs. Did your doctors tell you what the max is for radiation? I'm trying to get that from my dr., but I've read that 500-600 is max for most. Hope you're doing better since October. I feel like I'm always waiting for the next shoe to drop, so sympathize. I'm also looking for next steps and wonder the path I should take once I have clear idea of what's going on. Anyone with advice? My Tg is 7.2 but going up slowly but steadly over last year or so. My lungs are full of pulmonary nodules that they thought were from an old infection but now taking a second look since Ultrasound and MRI of neck have excluded recurrence there. Do you know where your Mets is? Take care.
  • miladyx
    miladyx Member Posts: 85
    #5
    LaGrange56 said:

    4 surgeries, 4 RAI's
    Hi, I'm very sorry you're going through this and am new to site so just saw your old post. What's the latest? I've also had 2 surgeries, 2 large doses or RAI (422 Mci, I think all together) and now have a recurrence somewhere, possibly in lungs. Did your doctors tell you what the max is for radiation? I'm trying to get that from my dr., but I've read that 500-600 is max for most. Hope you're doing better since October. I feel like I'm always waiting for the next shoe to drop, so sympathize. I'm also looking for next steps and wonder the path I should take once I have clear idea of what's going on. Anyone with advice? My Tg is 7.2 but going up slowly but steadly over last year or so. My lungs are full of pulmonary nodules that they thought were from an old infection but now taking a second look since Ultrasound and MRI of neck have excluded recurrence there. Do you know where your Mets is? Take care.

    hello lagrange
    i am sorry you are going thru this...
    How long ago were you diagnosed? depending on your age, tumor size, spread, etc, did doctors tell you what stage were you at diagnosis???
  • LaGrange56
    LaGrange56 Member Posts: 2
    #6
    miladyx said:

    hello lagrange
    i am sorry you are going thru this...
    How long ago were you diagnosed? depending on your age, tumor size, spread, etc, did doctors tell you what stage were you at diagnosis???

    Long haul
    It's been 7 years since diagnosed when I was 49. Tumor was 1.7 cm. Not sure of stage because not told and it's not in records. Just waiting for dr. to get back to me about whether or not doing a PET/CT....Great doctor but very bad about getting back to me promptly. Ready to give up on him, but I've been with him for 5 years so he knows my case, which is complicated.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #7
    Hi virjinia and LaGrange
    I can totally empathsize and sympathize. I had a total TT six years ago, and am on my second reocurrence. I have hurthle cell. After three years of being fine, it metastisized to my hip bone. I had a small piece scooped out, and I thought I was fine. Now my thryroglobulin has steadily risen since that surgery in 2008. I had a PET scan last May and nothing showed, but next blood tests my thyroglobulin had quadrupled. After a PET and RAI total body scan a spot showed in what they thought was my stomach. A CT scan and endoscopy later, nothing in my stomach, that's clear, but now they "think" it's on my liver. However, the CT scan isn't definitive, so next is an MRI, then a liver biopsy. I had two RAI treatments, but being hurthle cell, it didn't respond well.

    I am now seeking the care of Dr. Douglass Ball at Johns Hopkins. I strongly suggest you seek a hospital that specializes in treating cancer. The have the latest technology and research, and will difinitely help you. I can't wait to meet my new doctor.

    PLEASE PLEASE PLEASE do the same. You need to be your own best advocate. I've had to recently chase down my endocrinologist for test results and keep getting this, it's still not clear. I need answers and a course of action and have faith that Johns Hopkins will help me!

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