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Thyroid Cancer that spread into lungs

veronica57
Posts: 98
Joined: May 2010

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?

nasher
Posts: 507
Joined: Apr 2010

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

veronica57
Posts: 98
Joined: May 2010

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.

Sirboss
Posts: 3
Joined: Oct 2012

I had one side of my thyroid removed and the other side was killed by idione ration back in 1989. On August 7, I fell off the roof and rushed to the ER. The CT scan showed broken bones but also a node in the base of right lung. A PET scan on August 30 confirmed a high uptake in right lung base and also in Hila and subcarinal lymph, followed by bone and brain scan a week later which were clear. A CT scan guided biopsy was performed on September 30 showed a papillary thyroid cancer in right lung. Now I am scheduled for I-131 scan for October 24.
I am coughing a bit but I have severe indigestive, not sure if it is related?
Oh, for the biopsy, I did that last week, it was a CT scan guided biopsy, did not feel a thing and I was out of the hospital in a couple of hours.

SutterJosh2013
Posts: 3
Joined: Mar 2013

Hi, everyone I was diagnosed with Papillary Thyroid Caner a little more than a year ago. It was right before Christmas last year and I went in to get all of my thyroid removed. It was a 5 hour surgery and I stayed in the hospital for 3 days because of complications with my levels. But, they didn't look at the lymph nodes and the last two ultrasounds I have had revealed lymph nodes in my neck and one in my throat that have gotten bigger. I need some advice for thos who have had their thyroid cancer come back. My treatment of thyrogen shots, lab work, and scans start April 1st, 2013. I know this cancer is the easiest to treat but I'm wondering what happens if it has in fact spread to my lymph nodes and in my body? Does that change the prognosis or treatment or staging? Thanks for the help!

 

thanks,

josh sutter

Jane16131
Posts: 5
Joined: Mar 2013

Hi Josh!

Staging of papillary cancer depends on several factors.  If you are under 45 years old the staging is way different than if you are over 45 years old.  My husband had lymph node metastases already when they diagnosed him with his thyroid cancer and recently a CT showed nodules in his lungs, which we are not positive if they are cancer or not.  The PET scan wasn't accurate because my husband is a diabetic and a PET scan is sugar based.  The doctors don't seem to be as concerned if the cancer has just gone to the lymph nodes (regional metastasis) versus to the bone or lung etc.(distant metastasis).  Look under Hurthle Cell variant of papillary cancer on the discussion boards under thyroid cancer and you will find staging information that Baldy had sent.  Good luck to you. 

 

michelle beddy
Posts: 8
Joined: Mar 2013

hello josh    MY PARTNERS JUST WAITING FOR HIS 3RD OPERATION ON HIS  LYMPH NODES       THEY HAVE GOT TO CUT HIS CHEST THIS NEXT OPP   AND IS GOING TO BE A BIG OPERATION  THE THYROID CANCER HASNT COME BACK   JOSH   IT MAY HAVE BEEN THERE IN YOUR LYMPH NODES   BUT NOT DETECTED     IT IS A ESAY OPERATION    MY PARTNER WAS OUT AFTER 2 DAYS   BUT THIS ONE HE IS HAVING HEL BE IN 6 DAYS   FIRST 2 DAYS IN ICU      I HOPE ALL GOES WELL FOR YOU JOSH  

weberdns
Posts: 156
Joined: Mar 2010

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
Posts: 98
Joined: May 2010

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
Posts: 85
Joined: May 2009

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
Posts: 98
Joined: May 2010

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
Posts: 81
Joined: Jun 2010

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

veronica57
Posts: 98
Joined: May 2010

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
Posts: 41
Joined: Jan 2010

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
Posts: 98
Joined: May 2010

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's picture
alapah
Posts: 260
Joined: Oct 2009

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
Posts: 98
Joined: May 2010

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
Posts: 85
Joined: May 2009

Do you know how high your tg levels are?

veronica57
Posts: 98
Joined: May 2010

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
Posts: 85
Joined: May 2009

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.

veronica57
Posts: 98
Joined: May 2010

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
Posts: 85
Joined: May 2009

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!

galinbakersfield
Posts: 23
Joined: Apr 2013

I had thyroid removed in 2007, neg Tg levels until 6 months ago. It's not that high, around 1 but it's been slowly going up with each blood test no matter what levothyroxine I'm put on. Dr thinks this means that my thyroid is possibly growing back, (which isn't actually a good thing in this situation) Ever heard of this?

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

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
Posts: 98
Joined: May 2010

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
Posts: 7
Joined: May 2010

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

miladyx
Posts: 85
Joined: May 2009

Were u clear from 2003 to 2010?

tgreene1008
Posts: 7
Joined: May 2010

I was about 40 when I was diagnosed in 2003 and was considered clear between 2003 and 2010. If I remember right, it was me finding some suspicious lumps in my neck both times that lead to us finding it. My Tg between 1.5 to 5.5 from 2006 to 2009, which with the lump I felt gave doctors enough reason to do an MRI and find some canx lymph nodes.

I'm 47 next month.
Tom

miladyx
Posts: 85
Joined: May 2009

I am sorry you are doing through this the reason if i asked if you were clean for a period is because i awas wondering how long the lung nodules have been there? did you have chest cts or a whole body pet scan before 2010? there is a chance they have been there from the beginning?

also was there any spread in the begiining in 2003 that required multiple RaI? that may also explainwhy rai is not effective now. i heard the more it is used, it loses effectiveness.

would be interested in looking into either md anderson or memorial sloan?

on another note, i also have a friend whose lung nodules have been stable for 7 years so far and going strong.

tgreene1008
Posts: 7
Joined: May 2010

I really don't know how long the lung mets have been present, because the first time they did a CT scan beyond the neck was this year. So, they could have been there for a long time (or not). I did have RAI treatment in 2003 with no apparent uptake and then again in 2010 with no apparent uptake, but the fact that my Tg went down below 1.5 through 2006 tells me that maybe they weren't there then (or if so they were microscopic).

I am glad to hear of your friend's stable results. That's 2 good data points for me, plus I got an online doctor at MedHelp.com saying that 10-yr survival is probably 50% at my age.

I am in CA - where are MD Anderson and Memorial Sloan located?

Thanks for all the info.

miladyx
Posts: 85
Joined: May 2009

Memorial sloan is nyc, some of top thyroid cancer research facilities.

One important thing to know whether the lung nodules "lit up" on the pet scan as opposed to just showing up on ct. If they light up on pet, that also explains why they don't take up the radiation.

Did you many many lymph nodes involved initially? Also tg was lower than 1.5 or zero until 06?

tgreene1008
Posts: 7
Joined: May 2010

Then in 2010, had 50ish lymph niodes removed and 3 had canx. Lung mets do not show up yet on PET because they are too small, but I have two leasions about 6-8 mm in size under my clavicle that did light up in my first PET scan (2010).

My Tg was low until 2006 when it began trending up from 1.6 to current of 6.4. it's still relatively low but I want to be on top of it obviously.

alapah's picture
alapah
Posts: 260
Joined: Oct 2009

Houston, Texas. One of the thyroid docs/researchers I've heard referenced most for MD Anderson is Dr. Steven Sherman.

IndianaFarmBoy
Posts: 4
Joined: Sep 2010

The best thyroid cancer specialists on the West Coast are at UCSF (University of California - San Francisco). UCSF is a top 10 ranked hospital. They have a full set of specialists from head and neck, internal medicine, radiation / chemo, etc. who all have experience with the various forms of thyroid cancer. I have medullary, not papillary, and UCSF has kept me alive 17+years. For those with medullary 17+ years is on the right side of the survival bell curve. When I was diagnosed, people who had Medullary had a life expectancy of only 5 years. Though it is a bit higher now (btw 5 and 10). Bottom line for me is I have lymph system involvement, liver involvement, bone involvement and full lung involvement. My blood SO2 is down to an average of 94%. I am even moving to the SF area because I won't be able to fly much longer.

While I don't know much about them, UCLA also had a highly rated cancer center (the other CA top 10 ranked). I don't know their experience in thyroid cancer. For my money I would stick with UCSF. They are up to date on everything mentioned on these boards; radiation, iodine uptakes, ablation surgery (they were a clinical trial site for liver tumors and therefore I was the 36th person in the world to get liver ablation for my metastatic disease), Nexavar/Sorafenib and even some trials not mentioned such as the Zactima trial (going through FDA approval process right now). Cheaper than flying to Texas (Anderson), St. Louis (Barnes), or Baltimore (John Hopkins), etc.

Sorry this message is so late but I just joined the CSN.

tweety1234
Posts: 1
Joined: Nov 2011

hi Tom.....i'am a thyroid cancer patient diagnosed 2 months ago sept. and august this yaear i am 41 years old...i m need some advice from people who been there....
thanks

LorenaRN
Posts: 12
Joined: Jan 2014

Hi, I had thyroid nodules 15 yrs ago on my left side. They followed them for 1 1/2 yrs, then did a biopsy that was inconcluisive. So they took the left side out and said it was benign. Life went on.

I had a MRI of my neck after a car accident May 2013 and there was an incidental finding of multiple nodules on the right lobe. I did not panick, figured they were most likely benign like the left side.

WRONG, I had a untrasound in Aug. then Biopsy in Sept. and sure enough Papillary thyroid cancer two nodules.

I just had the completion of the thyroidectomy on Dec. 5th, I had to be on an Iodine free diet until my TSH level hit 30, which took 3 weeks. The doctor said he could not find any lymph nodes in the area so he did not remove any to biopsy. So, I though there were lymph nodes all over the neck naturally. I guess not until they pop up from something.

I took the Radioactive Iodine I-131 on Jan. 2nd, I am in isolation at home staying away from my pets and college age son, and my boyfriend.

I am able to retun to work on Monday the 6th, as long as I stay away from pregnent women and children which is fine as I work in my own office in a law firm.

My next step is a full body scan and the Dr. states that he expects the uptake of the iodine to be in my thyroid area. Everything he told me so far has been acurate. Sore glands under my jaws, sore around where the right thyroid was, and dry throat. I had a headache 24 hours and a little nausea yesterday but today I feel good. I still am tender in my salivary glands, so he said suck on a lot of hard candy and drink a ton of fluids to flush out the I-131.

He said I would be sore in the places where there was remaining thyroid tissue after surgery and he was correct. he said my salivary glands would be sore and he was correct.

So far everything they have told me has beeen right on target. I am in Orlando and feel I am in very capable hands.

I do the full body scan in 2 weeks, and pray that there is nothing that has spread. but if there had been thyroid cells that had spread  I would be feeling pain right now while the Radioactive Iodine was killing off the cells.

I had a chest x ray pre-op and that was OK.

Everything seems to be going OK.

I feel positive and I think this type of cancer can be beat, and with little chance of reoccurance when caught early.

I wish you the best, and I hope I could be of some help to you.

Are you scheduled for surgery?

Best of luck,

Lorena

veronica57
Posts: 98
Joined: May 2010

It seems we've had all the same experiences except, I'm already taking nexavar. I already had a lung biopsy also. My onco told me this cancer will never go away. He says the nexavar will hopefully stop the growth of new nodules that are growing in my lungs. I will be 53 on the 4th of Sept., and I want more than 5 years also. I have two grandchildren, 8 and 5 and I want to see them graduate high school. They also have to make me a great grandma and my daughter a grandma:)

tgreene1008
Posts: 7
Joined: May 2010

Let's see how many of those Sept 4th celebrations we can keep having!!!!

Can you tell me whether the biopsy provided any value for you (lookig back on it)>

Also, what was your Thyroglobulin level when you started Naxavar... I am trying to get a sense when that "on-ramp" onto drug therapy is for everyone. My onco wanted to start it 3 months ago, but other docs saying to wait since I am still at low Tg levels.

veronica57
Posts: 98
Joined: May 2010

That is wierd:)I hope we have many more Sept. 4th celebrations. The biopsy proved that the cancer in my lungs was still thyroid cancer. The doctors had begun to think that it was some other type of cancer because I had new nodules growing in my lungs and the existing ones were getting bigger. I don't know what my tg levels were. But I wasn't getting uptake from the iodine treatments except in my neck. My docs wanted to wait too. But I insisted on some type of treatment because I went to the ER not able to breathe, and after looking at my previous ER report, they said I had new nodules. They said my lungs were full of nodules. The surgeon that performed the biopsy confirmed that also. He told me that my onco needed to start treatment.

The nexavar is a pain though. The doctor reduced my dosage of the nexevar to one 200 mg. tablet. But it's still hurting my feet, making me barely able to walk. The Nurse Practitioner took me off of them again today until I go back on Tuesday.

fefa5
Posts: 4
Joined: Oct 2010

I was also diagnosed in 2003 (age 22 & during pregnancy) and now find myself with innumerable lung mets. I had my tt in 2003 along with a partial neck dissection. (6 of 7 involved) I did have uptake and was followed thereafter. Feb 2009 my tg level was up to 5.9. CT showed lung mets and a few in my old thyroid bed. I had a 2nd round of RAI and post scan did show uptake in all areas. However I am over a year post treatment and my tg level in Aug was 6.1 and as of this week is 6.6 (age 30...a fellow September birthday)

I saw on here that other patients were suggesting MD Anderson. That's actually where I just went this week. My guidance received has been the same as you. I'm not considered to be stage IV strictly because of my lower age level. I did however just find out that I have a slightly more aggressive form because mine if poorly differentiated. Not something I heard up until now after MD Anderson reviewed my original pathology slides from 2003. This is probably why, even though I show uptake, the RAI treatment didn't work. From what I can tell these cells don't typically respond as well. If anyone else out there has the same kind and knows more than me please fill me in.

Watchful waiting...how do you feel about that? Even after hearing all of their comforting words like "slow" "stable" "young" I still find myself questioning whether there is a more aggressive approach. I found a Dr. Kenneth Ain that seems to be researching higher doses needed of RAI for it to be effective for lung mets. For instance the standard highest dose would be around 200 and he says he's gone as high as 600. (saying there is no such thing as a lifetime limit of RAI) He also said there are meds you can take to help hold the RAI "in" longer for it to be more effective. Of course this is all research I did prior to hearing about the poorly differentiated info and may no longer be relevant in my case.

Back to what you were saying. My doctor doesn't want me back in for 6 months and I think I'd feel more comfortable with every 3 months like you are doing. I saw the same survival rate research you did and don't know what to make of it and try my best not to think of it. I just got married a month ago and I have a 7 year old son.

To share a good story. My new doctor at MD Anderson says she is currently monitoring a patient with lung mets that has been in the "watchful waiting" stage for 15 years.

I would love any research you've collected if you want to send a personal message. I'd be happy to swap with you.

Fey

veronica57
Posts: 98
Joined: May 2010

I'm glad that you are post treatment for over a year and your tg levels are doing good. I'm glad you made it through your pregnacy also.

I'm being treated with nexevar and waiting to see if it is working or not. The doctor had to take me off of it several times and now, I'm taking one pill every other day. I go every other week for blood work. I was suppose to go yesterday to see the onco. But I was so tired and basically feeling low. So I canceled.

I understand what you mean about the comforting words. Questions still remain in the back of your head. My doctor said to me the last time I was there, " You were so anxious to get on this medication. Now this is what you have to go through." Of course I was anxious. My mets nodules were getting bigger and multiplying. The doctors diagnose. They don't feel the anxiety and fear that we feel.

I'm in Va. and I don't have the finances to travel. So what ever you find out from MD Anderson and other research, please fill me in.
Best wishes,

Veronica

Paula64
Posts: 1
Joined: Apr 2013

I am so relieved to seet his string. I was dx with stage IV in 2001. I have undergone a thyroidectomy and 5 neck dissections for large recurring nodules and 3 rounds of radiated Iodine. It was found in my lungs in 2007. I have had numerous CT scans and PET scans and even a trip to Mayo where I was finally told my CA is resistant to radiation and to never have radiation again. My thyroglobulin levels is 80 and I'm still in the "watchful waiting" mode. I get lab work every 6 months and now (hopefully) get a CT scan every year since my lifetime radiation dose is sky high.

When my lung CA was found I was still told that this CA grows very slowly and I could live like I am for another 20 years, and 13 years later I'm still here working full time and raising 2 kids (though now they are college -age).

Don't give up hope. The waiting can be hard and my lung nodules are now just about big enough that they may consider starting the oral chemo; I will find out in July. I hope you are doing ok.

Keep the comments coming. It is nice to know I"m not the only one around with this; it is rare indeed.

Paula

miladyx
Posts: 85
Joined: May 2009

was it not in your lungs when diagnoased in 2001? did it spread after all the neck dissections and 3 doses of RAI?

Hannah1
Posts: 63
Joined: Jun 2012

 

Hi Paula, that's right don't give up and be strong. I also have lung metastasize and TG is also rising now 215 from 169  six months ago. How big are your nodule now and where are you getting your treatments. I have multiple nodules on both lungs and no treatments yet. I wonder how big will the nodules be to get treatments. Watchful waiting is really very hard to do so I keep myself busy but once in while it hits me. I will be going to MD Anderson in July for consults with Dr. Sherman. I willlet you know. Take care and god bless. 

grateful1
Posts: 81
Joined: Jun 2010

my integrative oncologist wants me to take sutent. i have a muscle disease--and muscle damage is a side effect so i am leery. do you know anyone who took it. i have a large tumor on my life side with constant pain. they can't remove it because it is too close to the aorta and vital structures. thanks and good luck

veronica57
Posts: 98
Joined: May 2010

I'm not familiar with sutent. But if it causes muscle damage, I don't think I would try it. The nexavar keeps causing extreme pain in my feet. I'm afraid it's damaging the nerves in my feet.

Did you ever try a thoracic surgeon? They do tedious surgeries such as with vital organs. I wish you the best.

jikino
Posts: 1
Joined: Apr 2012

Hi there. I too have thyroid cancer that has moved into my lymph nodes and possibly my lungs. The lungs show several masts but haven't changed in size in 9 months. I do not have any uptake from the Iodine. I have been feeling a constant pain in my right lung and am anxious to go back to Mayo for my next scan in 2 months to check it out.
I know there is a trial drug for growing masses right now and want to see how you are doing since your last post. It seems to be a while since you last logged on.
Can you please up date me on your progress. I hope you are doing great and are beating this thing.
Thank you for your time.

miladyx
Posts: 85
Joined: May 2009

How were the masses in the lungs found? How high is your tg?

rachela38
Posts: 1
Joined: Nov 2013

Did or do any of you experience symptoms from the lung mets?

RJS
Posts: 5
Joined: Aug 2014

I would love more info from youe med treatment center. I have stage 4 thy can. after the removal and taking levothyroxine, it has met to my lungs and now I am faced with yet more rad pill treatments. I have read tht the ad pills can also cause luekemia if treated too many times

PATIENTS_FRIEND
Posts: 1
Joined: Mar 2012

CAPITALS ONLY MEANT FOR NEED TO READ LARGE PRINT ..VISION PROBLEM....THANKS FOR UNDERSTANDING ..EXCUSE WORD ERRORS

MARCH 8TH 2012

I AM BRINGING MY FRIEND TO SLOAN KETTERING TODAY , SHE IS IN STAGE 4 PAPILLARY CANCER. SHE HAD THYROID SURGERY IN 2003 AND NOW IT SPREAD TO HER LUNGS.

SHE HAD A CAT SCAN ON MONDAY AND WE ARE GOING THIS MORNING TO GET THE UPDATE ON HER CONDITION .

SHE HAS BEEN TAKING "SYNTHROID " SINCE 2006 POST SURGERY, MABE THE DOCTOR WILL PRISCRIBE ADITIONAL TRAIL DRUG TODAY ?

MY FRIAND THE PATIENT IS 63 YRS OLD, RETIRED AND WANTS TO SPEND THE REST OF HER LIFE TRAVELING THE WORLD , BUT HAS FOUND OUT WHEN YOU ARE TAKEN THE NEW TRIAL DRUGS THAT IN STAGE 2/3 TRIALS THEY ARE NOTED YO CAUSE FATIGUE AND OTHER SIDE AFFECTS...(NO LOG TRIPS ?) IS THIS TRUE ?

NODULES ON HER LUNGS ARE A LITTLE MORE THAN A CENTIMTRE, AND SHE IS IN DENIAL OF REALIZTION ..AND DOES NOT WANT TO BE PART OF A BLOGG...SO I AM TAKING HER PLACE TO NETWORK WITH THYROID SURVIVORS SEEKING TO EXCHANGE INFO RE: QUALITY OF LIFE VS NOT TAKENING THE RECOMENDED TRAIL DRUG AT ALL..THAT WILL HOPFULLY STOP THE NODULE GROWTH ..

QUESTION :DOES ANYBODY KNOW OF A DRUG GOING THROUGH CLINICAL STUDY THAT DOES NOT CAUSE THE PATIENT TO BE TIRED..?
QUESTION :IS THERE A TRIAL DRUG THAT REVERSES NODULE GROWTH ?
QUESTION : IS THERE ANY INFORMATION YOU CAN RENDER TO ME REGARDING MY FRIENDS STAGE 4 CONDITION AND HOW TO OVER COME THE SIDE AFFECTS ONCE SHE IS ON A REGIMENTED TRIAL DRUG PROGRAM THAT CAUSES FATIGUE + OTHER SIDE AFFECTS..
DIET , ETC.

FINALLY , SHE DOES NOT WANT TO GO THROUGH THE REST OF HER LIFE IN FATIGUE...FROM THE TRAIL DRUG ..SO I NEED TRUE LIVING INPUT FROM ANYONE..

SHE IS CONSIDERING TO AVOID THE TRIAL DRUG PROGRAM ..AND I WANT TO COLLECT AS MUCH FEED BACK SO I CAN BE REALISTIC IN CONVEYING THE MESSAGE OF THE DRUG PROGAM VS HER DECISION...WHATS MORE... HER TRIAL DRUG CHOICES ARE BEING DISCLOSED TODAY WHILE IN THE DOCTORS OFFICE... PLEASE REPLY WITH INPUT FOR MY TO RENDER TO HER..

I KNOW I AM ASKING FOR A MIRACLE AT THIS POINT IN CANCER CLINICAL TRIALS AND RESEARCH STUDIES .. BUT I LEAVE NO STONE UNTURNED..

I THANK EVERYONE FOR READING THIS BLOGG AND WISH / PRAY FOR THE DAY WILL COME WHEN THAT MAJOR BREAK THOUGH IS ANNOUNCED THAT STAGE 4 PATIENTS CAN TAKE THE "NEW" MEDICATION AND GO THROUGH A NORMAL SENIOR CITIZEN LIFE CYCLE
HAVING NO OR MINIMAL LOSS OF ENERGY AND PAIN...I WAIT TO HEAR THE DOCTORS UPDATE TODAY ..MARCH 8TH 2012

PATIENTS FRIEND

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