Thyroid Cancer that spread into lungs

veronica57
veronica57 Member Posts: 98
edited March 2014 in Thyroid Cancer #1
I was diagnosed with papillary carcinoma(stage 4)in March,2009. It had mestastisized to lymph glands and my lungs. I had a thyroidectomy in April, and the lymph glands were removed as well. I was referred to an Endocrinologist that takes forever to get me scheduled for treatments. My first treatment wasn't until August. I thought I had a second treatment in March as I had gone for thyrogen injections for two days and I had a pill the next day, that I thought was an iodine treatment. The doctor told the receptionist to tell me that all the cancer was gone. But after persistently calling the doctor to find out if the cancer was gone in my lungs, he informed me that he had just realized that I never got the second treatment. The pill that they gave me was a test pill. He also say that I am soaking up the iodine. The cancer is still in my lungs and slowly growing. Yet, they say, it has to grow more before they can biopsy the nodules. I am so frustrated. I go for a kat scan tomorrow, and then I see the cancer doctor on Friday. But if the endocinologist tells the cancer doctor that the cancer is gone in my thyroid, they don't even try to do anything for the cancer in my lungs. I have shortness of breath, chest pains and a burning in my chest. They insist that the nodules is not causing these problems. They refuse to give me chemo, saying that it will make me sick. Does anyone have any advice?
«1345

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    from what i have learned
    from what i have learned about cancer if it mestastisizes and spreads to another organ it is still the same type of cancer.. IE thyroid cancer of the lungs so radioactive Iodine should be the treatment unless you have a resitance to radio-iodine cancer type.

    talk to your endo and find out what they plan on telling your cancer doctor... talk to your cancer doctor and find out what they need from your endo and what other info they can give you.

    also i recomend looking up http://www.thyca.org/ they will have a nice list of questions there to talk to your doctor about as well as a wonderfull support group.

    and yes chemo will make you sick.. it is how sick vs how much they can kill of the cancer that is what matters to the doctors.

    also if they are insistant that the nodules are not causing the problems have them get you to a specialist in lungs to figure out what the problem is.

    heck i was told a few times by some of the doctors i saw them that just cause i had problem with thyroid they wanted to make sure it was not somehting else just cause people assume all other problems are caused from the first one.

    keep talking to the doctors and good luck
  • weberdns
    weberdns Member Posts: 154
    #3
    Hugs!
    There isn't a lot of chemo that they can give to you to treat thyroid cancer. They will do spot radiation to treat metastasis. I'm confused how you could only get a test dose and not a treatment dose. I would also recommend that you see the oncologist first before the CT scan in case the oncologist wants to do Radioactive iodine. CT scans can sometimes cause your cells not to take up the Radioactive iodine.
  • veronica57
    veronica57 Member Posts: 98
    #4
    nasher said:

    from what i have learned
    from what i have learned about cancer if it mestastisizes and spreads to another organ it is still the same type of cancer.. IE thyroid cancer of the lungs so radioactive Iodine should be the treatment unless you have a resitance to radio-iodine cancer type.

    talk to your endo and find out what they plan on telling your cancer doctor... talk to your cancer doctor and find out what they need from your endo and what other info they can give you.

    also i recomend looking up http://www.thyca.org/ they will have a nice list of questions there to talk to your doctor about as well as a wonderfull support group.

    and yes chemo will make you sick.. it is how sick vs how much they can kill of the cancer that is what matters to the doctors.

    also if they are insistant that the nodules are not causing the problems have them get you to a specialist in lungs to figure out what the problem is.

    heck i was told a few times by some of the doctors i saw them that just cause i had problem with thyroid they wanted to make sure it was not somehting else just cause people assume all other problems are caused from the first one.

    keep talking to the doctors and good luck

    Hi Nasher
    Thank you and, you're right. The nodules are resistant to the iodine. I saw the cancer doctor on Friday. He told me that the nodules in my lungs are growing bigger and multiplying. He's referring me to a surgeon to do lung biopsy. I'm afraid, and unsure if I should go through with it. He says, they will cut a piece of my lung inorder to get one of the nodules off. The onco actually says he's never seen anything like it before. The endo says, he's not sure if it's another type of cancer. I'm waiting for the onco's office to call me with an appointment to see the surgeon.
  • veronica57
    veronica57 Member Posts: 98
    #5
    weberdns said:

    Hugs!
    There isn't a lot of chemo that they can give to you to treat thyroid cancer. They will do spot radiation to treat metastasis. I'm confused how you could only get a test dose and not a treatment dose. I would also recommend that you see the oncologist first before the CT scan in case the oncologist wants to do Radioactive iodine. CT scans can sometimes cause your cells not to take up the Radioactive iodine.

    Hugs
    You're right. The onco told me on Friday, that the only chemo to be somewhat beneficial would be the pills. He named a few and said they would only shrink the nodules a little and I would have side effects from it. I can't get radiation because it is in my lungs. A radiation oncologist says that radiation will burn my lungs. I had a CT scan on Wednesday before seeing the onco on Friday. As I told Nasher, they want to do a lung biopsy to see what type of cancer it is or are they cancerous at all.
  • miladyx
    miladyx Member Posts: 85
    #6
    veronica57 said:

    Hugs
    You're right. The onco told me on Friday, that the only chemo to be somewhat beneficial would be the pills. He named a few and said they would only shrink the nodules a little and I would have side effects from it. I can't get radiation because it is in my lungs. A radiation oncologist says that radiation will burn my lungs. I had a CT scan on Wednesday before seeing the onco on Friday. As I told Nasher, they want to do a lung biopsy to see what type of cancer it is or are they cancerous at all.

    hi veronica
    How did the nodules in your lungs initially absorb the rai?
    Also how high is your tg? That should give you a good idea of whether the lungs have thyroid cancer nodules?

    I am sorry you're dealinf with this.
  • veronica57
    veronica57 Member Posts: 98
    #7
    miladyx said:

    hi veronica
    How did the nodules in your lungs initially absorb the rai?
    Also how high is your tg? That should give you a good idea of whether the lungs have thyroid cancer nodules?

    I am sorry you're dealinf with this.

    Hi miladyx
    Thank you, and I'm sorry I'm just getting back to you. I ended up in the hospital last week, and I just came out today. I don't really know what's going on. My onco gives me bits and pieces of information and leave me hanging. I do know that the nodules are still in my lungs and growing. A few doctors have said, they have never seen anything like it before. They want to do a lung biopsy now, and I have an appointment to see the surgeon in the morning. I am so scared. I'm scared to go through with it, and I'm scared not to. I'm 52 years old and I must admit, I've been a smoker for 34 years. I've tried to kick the habit, and I can't. I lay in that hospital all week eating every meal that came along, and more besides:) I'm on steroids presently, and that makes me eat even more. I will let you know tommorrow what the surgeon says.
  • grateful1
    grateful1 Member Posts: 80 Member
    #8
    cancer-lung
    My mom had lung cancer--and the raditation treatment five days a week for six weeks shrunk it.
  • veronica57
    veronica57 Member Posts: 98
    #9
    grateful1 said:

    cancer-lung
    My mom had lung cancer--and the raditation treatment five days a week for six weeks shrunk it.

    grateful1
    Hi grateful. Sorry it took so long for me to reply. I've been sick and in the hospital twice since June 8th. I had a lung biopsy on the 21st of June, which confirmed that the cancer growing in my lungs is still the same cancer that spread from my thyroid over a year ago. The doctors are baffled because they have never seen it do this before. I will be starting a cancer pill that's used for kidney cancer soon. They're hoping this will shrink my nodules as well. It's called sarafin. I'm afraid of the side effects.
  • lynn2318
    lynn2318 Member Posts: 41
    #10
    veronica57 said:

    grateful1
    Hi grateful. Sorry it took so long for me to reply. I've been sick and in the hospital twice since June 8th. I had a lung biopsy on the 21st of June, which confirmed that the cancer growing in my lungs is still the same cancer that spread from my thyroid over a year ago. The doctors are baffled because they have never seen it do this before. I will be starting a cancer pill that's used for kidney cancer soon. They're hoping this will shrink my nodules as well. It's called sarafin. I'm afraid of the side effects.

    Hi, I just read your story
    Hi, I just read your story and I to had stage IV papillary thyroid cancer which had spread to my lymph nodes in my neck. My thyroglobulin levels are continually going lower but I have told myself and my family if they start going up again I am going to MD Anderson cancer center in Houston TX. I have had a CT scan, PET scan and several full body scans which have been ok, but the fear is always there. My prayers are with you and your doctors. I hope they will become more open with you and communicate better. Take care.
  • veronica57
    veronica57 Member Posts: 98
    #11
    lynn2318 said:

    Hi, I just read your story
    Hi, I just read your story and I to had stage IV papillary thyroid cancer which had spread to my lymph nodes in my neck. My thyroglobulin levels are continually going lower but I have told myself and my family if they start going up again I am going to MD Anderson cancer center in Houston TX. I have had a CT scan, PET scan and several full body scans which have been ok, but the fear is always there. My prayers are with you and your doctors. I hope they will become more open with you and communicate better. Take care.

    Thank you lynn
    Thank you lynn. I am glad your scans are showing well now. I understand your fears, and surely, follow your instincts. I recently had a lung biopsy which proved that the same cancer is still growing in my lungs. Now, I'm about to start a cancer pill soon. I'm nervous about it. But, I know I must. You take care too, and God bless you.
  • alapah
    alapah Member Posts: 287
    #12
    veronica57 said:

    Thank you lynn
    Thank you lynn. I am glad your scans are showing well now. I understand your fears, and surely, follow your instincts. I recently had a lung biopsy which proved that the same cancer is still growing in my lungs. Now, I'm about to start a cancer pill soon. I'm nervous about it. But, I know I must. You take care too, and God bless you.

    lung mets
    veronica, i just came across this thread - i have lung mets too, as it turns out. from what i have read it's difficult to treat but there are folks using chemo drugs for lung mets that are RAI resistant. I'm assuming that is what you are on? nexavar or sutent? i think a biopsy is the next step for me. it's pretty scary. there seem to be a number of clinical trials for chemo drugs for thyroid cancer mets. it's not that common to have lung mets but then again it's not unheard of. why were your docs so baffled/surprised? just curious.
    I do hope you are doing well and getting favorable response from the drugs.
  • veronica57
    veronica57 Member Posts: 98
    #13
    alapah said:

    lung mets
    veronica, i just came across this thread - i have lung mets too, as it turns out. from what i have read it's difficult to treat but there are folks using chemo drugs for lung mets that are RAI resistant. I'm assuming that is what you are on? nexavar or sutent? i think a biopsy is the next step for me. it's pretty scary. there seem to be a number of clinical trials for chemo drugs for thyroid cancer mets. it's not that common to have lung mets but then again it's not unheard of. why were your docs so baffled/surprised? just curious.
    I do hope you are doing well and getting favorable response from the drugs.

    alapah
    I don't know why the doctors were so baffled. I guess because, the mets nodules are growing new nodules. I just received the pills(nexavar)on Tuesday, the 27th, and so far I haven't had any major side effects. It actually made me start eating better. I will see the onco on Friday to check my blood levels, and I will get another CT scan in September. I was scared about the biopsy too. But it went well. I have a small scar at the top of my left side and it healed very well. I hope it goes well for you. Keep in touch.
  • miladyx
    miladyx Member Posts: 85
    #14
    veronica57 said:

    alapah
    I don't know why the doctors were so baffled. I guess because, the mets nodules are growing new nodules. I just received the pills(nexavar)on Tuesday, the 27th, and so far I haven't had any major side effects. It actually made me start eating better. I will see the onco on Friday to check my blood levels, and I will get another CT scan in September. I was scared about the biopsy too. But it went well. I have a small scar at the top of my left side and it healed very well. I hope it goes well for you. Keep in touch.

    veronica...
    Do you know how high your tg levels are?
  • veronica57
    veronica57 Member Posts: 98
    #15
    miladyx said:

    veronica...
    Do you know how high your tg levels are?

    miladyx
    No I don't. What are tg levels. By the way, are you familiar with a pet scan. I've noticed several people saying that they had a pet scan. I don't think I've had one. Does it show more than the ct scan?
  • miladyx
    miladyx Member Posts: 85
    #16
    veronica57 said:

    miladyx
    No I don't. What are tg levels. By the way, are you familiar with a pet scan. I've noticed several people saying that they had a pet scan. I don't think I've had one. Does it show more than the ct scan?

    tg=thyroglobulin
    Which is the cancer or tumor marker. It shows the presence of thyroid or thyroid cancer cells. Your doctors musy have this value.

    Pet scan shows something a little different than ct. Ct shows any nodules, nodes,etc and pet measures the metabolic activity of these nodes, nodules... Meaning how quickly they metabolize sugar to be exact.

    Cancer cells metabolize sugar fast so they stand out on a pet scan. However pet does not specifically show cancer. Any inflammation due to another reason may show as well. I hear that it is a great diagnostic tool especially when used in conjunction with other diagnostic tools and scans.
  • alapah
    alapah Member Posts: 287
    #17
    veronica57 said:

    miladyx
    No I don't. What are tg levels. By the way, are you familiar with a pet scan. I've noticed several people saying that they had a pet scan. I don't think I've had one. Does it show more than the ct scan?

    Tg
    Tg stands for thyroglobulin, which is produced by thyroid cells. It can be measured from blood tests and is used to tell if a patient has remaining thyroid cells in the body. The goal for thyroid cancer patients is to have a Tg reading that is undetectable. Often, patients go through more than one round of RAI to kill the remaining thyroid cells. The presence of Tg doesn't necessarily mean cancer remains, as it only measures thyroid cells, not just cancerous ones. If you have thyroglobulin antibodies (TgAB) this test is not very reliable because the antibodies skew the Tg number. It's important to have your blood work done at the same lab, using the same assay so they can be compared on the same base. There is a good summary of these labs and what they mean at http://www.thyca.org/thyroglobulin.htm

    A PET scan is used to detect cancer. I have had two done and each time the PET was done in conjunction with at CT, on the same machine. PET scans require an injection of an isotope in glucose. Really active cells, like cancer cells, take up the glucose and light up on the scan. CTs usually use some sort of contrast. For my first two I had iodine contrast but for the last one it was diluted barium taken orally. I don't think one is better than the other. Just depends on what your docs determine will best help diagnose the situation.
  • veronica57
    veronica57 Member Posts: 98
    #18
    miladyx said:

    tg=thyroglobulin
    Which is the cancer or tumor marker. It shows the presence of thyroid or thyroid cancer cells. Your doctors musy have this value.

    Pet scan shows something a little different than ct. Ct shows any nodules, nodes,etc and pet measures the metabolic activity of these nodes, nodules... Meaning how quickly they metabolize sugar to be exact.

    Cancer cells metabolize sugar fast so they stand out on a pet scan. However pet does not specifically show cancer. Any inflammation due to another reason may show as well. I hear that it is a great diagnostic tool especially when used in conjunction with other diagnostic tools and scans.

    Thanks miladyx.
    The endo told me that all thyroid activity is gone in my neck. I have a flow chart from the onco. It doesn't show any measurement of tg. But it shows that my tsh level in June was 7.0. It doesn't show what it was in July. I am diabetic also. So, I guess that is why they don't do the pet scan.
  • miladyx
    miladyx Member Posts: 85
    #19
    veronica57 said:

    Thanks miladyx.
    The endo told me that all thyroid activity is gone in my neck. I have a flow chart from the onco. It doesn't show any measurement of tg. But it shows that my tsh level in June was 7.0. It doesn't show what it was in July. I am diabetic also. So, I guess that is why they don't do the pet scan.

    interesting..
    They normally do flow charts of tg because the trend is important. Why dony u ask your doc about it?
    What did they say or do about your tsh of 7 in july because that is too high for a thyroid cancer patient!
  • veronica57
    veronica57 Member Posts: 98
    #20
    alapah said:

    Tg
    Tg stands for thyroglobulin, which is produced by thyroid cells. It can be measured from blood tests and is used to tell if a patient has remaining thyroid cells in the body. The goal for thyroid cancer patients is to have a Tg reading that is undetectable. Often, patients go through more than one round of RAI to kill the remaining thyroid cells. The presence of Tg doesn't necessarily mean cancer remains, as it only measures thyroid cells, not just cancerous ones. If you have thyroglobulin antibodies (TgAB) this test is not very reliable because the antibodies skew the Tg number. It's important to have your blood work done at the same lab, using the same assay so they can be compared on the same base. There is a good summary of these labs and what they mean at http://www.thyca.org/thyroglobulin.htm

    A PET scan is used to detect cancer. I have had two done and each time the PET was done in conjunction with at CT, on the same machine. PET scans require an injection of an isotope in glucose. Really active cells, like cancer cells, take up the glucose and light up on the scan. CTs usually use some sort of contrast. For my first two I had iodine contrast but for the last one it was diluted barium taken orally. I don't think one is better than the other. Just depends on what your docs determine will best help diagnose the situation.

    Thanks alapah.
    You and miladyx gave great explanations. The last time, I went to the endo, which was about april or may, he said there was no more thyroid activity in my neck. So I assume my tg reading was undetectable. He hasn't scheduled me for any other appointments. I drank the barium once. But I've never had any other contrast before a CT scan. Thanks for the website. I'm certainly going to visit it. Thanks again.
  • tgreene1008
    tgreene1008 Member Posts: 8
    #21
    veronica57 said:

    Thanks alapah.
    You and miladyx gave great explanations. The last time, I went to the endo, which was about april or may, he said there was no more thyroid activity in my neck. So I assume my tg reading was undetectable. He hasn't scheduled me for any other appointments. I drank the barium once. But I've never had any other contrast before a CT scan. Thanks for the website. I'm certainly going to visit it. Thanks again.

    My similar experience with Stage IV PTC and lung nodules
    It is so encouraging to find a discussion thread that touched on situations like mine. I have a great nuclear medicine guy who is acting as my primary physician for this cancer even though I no longer get any results from raI131. I have talked with chest surgeon, oncologist, Nuc Med doc and head-neck surgeon. Let me tell you what I have learned in case it helps. My situation is Tg level at 6, up from 5 at start of the year. I had thyroidectomy in 2003 and radical neck dissection in early 2010 to take a lot of canx lymph nodes. No uptake on raI131 treatment in April, but I had a PET/CT scan in May when my Thyroglobulin had only gone down to 5.4. PET/CT scan confirmed 2 nodes under my clavicle and numerous nodes in my lungs (under 6mm in size). Re-scan (CT) in Aug shows lung nodules more clearly and Tg at 6.2. I have normal lifestyle today.

    Guidance I have gotten:
    - Oncologist in April wanted to start trial Nexavar right away (promising clinical trials so far with positive results delaying tumor growth for 60%ish of people, currently in Phase IV trial). Chemo is not an option as it rarely works. External beam radiation can't be used on lungs. Nexavar (and other trial drugs) only work for a period of time in many people tested, so I am holding off on that until things worsen).
    - Surgeon said he could operate on neck cancer and could do biopsy, but he clearly felt that neither was worth the risk/inconvenience. Biopsy recovery would be longer than thyroidectomy was... plus lung nodes trump the neck ones as the bigger issue.
    - Nuc Med guy says I131 no longer making a difference so that's not adviced. He's acting as objective 3rd party right now (which helps).

    NOTE: I have learned that every doctor tends toward what they know how to do (meds or chemo, surgery, I131, etc).

    So, I am doing what the doctor calls "watchful waiting". While Tg levels stay low, I will just take life 3 months at a time (interval between CT scans). When Tg shows s increase beginning then I will start taking Nexavar to extend my time as long as I can. My Nuc Med doctor is advising another patient (60 yr old woman with same lung met situation as me). She has been taking quarterly CT scans for 12 years and without nodules growing at all! I want her outcome I think...

    My question to the group is what kind of timeline can we expect to have when we're at Stage IV PTC. I saw one old study from 2002 saying 5 yr survival for Stage IV was 46% and 10 yr survival was 40%. I am really hoping not to be facing a 5 year horizon here because my youngest daughter won't graduate high school for another 7 years...

    Keep sharing. I could send research I've gathered if anyone wants it.

    Tom

Discussion Boards