Thyroid Cancer that spread into lungs

jikino said:

How are you now?
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.

veronica57 said:

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.

cjb0623 said:

Lung nodules
I was just diagnosed with thyroid cancer a year ago. It was found after having a ct scan for neck pain. Like almost everyone I was told it was the "best" cancer to have???? Really! Three months after the surgery, I got pneumonia, first time in my life, five days in the hospital. During a routine ct scan to check on the pneumonia I was told that there was nodules in the other lung. They are very small. I was told not it was not unusual to see nodules show up on a ct scan. Three months later they repeated the scan. They were some minor changes noted in the size. They said they will just watch them to see if the become any larger. Really nothing they can do right now because of the size. I am so surprised to see how many people have also experience lung nodules. Not sure if I should be concerned or not.

The biggest problem I'm having is that they keep changing my thyroid medicine, mainly because the mfg. stopped making what I was taking. They changed the brand, then my levels of TSH elevated, they have now increased the dosage and changed the mjg again. I feel terrible, have experienced unexplained wieht gain even though I eat right and exercise daily.

Bob48 said:

Lung Metastasis
There is no way to predict how long before you have shortness of breath. It may be many years before it occurs. Do not let your diagnosis get in the way of your lifestyle. If you exercise hard, continue. Maintain a positive attitude and let's hope for the best.

Bob48 said:

Lung Nodules
I always found the phrase."The best cancer to have" offensive. The word best and cancer do not belong together.Yes, you should be concerned about your lung nodules. Not necessarily worried but concerned. Both the number and size of your lung nodules are important. There is no way to predict how fast these nodules will grow or whether they will increase in number. There are people with lung mets. who are still alive 20 years later and others that are not. Your Dr. will watch your Tg levels and probably do a CT scan every 6 months. This will let him know how you are doing. If the nodules stay small they will do nothing as there is nothing to be done.They call it "watchful waiting" If they do start to interfere with lung function or become more aggressive they will then treat you.

It is important to find the correct dosage for your thyroid medication and also to use the same MFG. Even the same dosage but made by different MFG'S will effect both how you feel and your TSH levels. What medication are you taking, dosage and who makes it? Good luck and keep in touch.

Are there any symptoms associated with lung metastasis? I had a thyroidectomy on 12/10/12 (small PTC) and am scheduled for RAI and body scan in a few weeks.  Have been "sick" with terrible cold/hacking cough for most of the last year...Seriously, 9 months of the last year.  Sometimes coughing fits until I choke or throw up (no blood).  Might just have low resistance, but have been worried about lung mets since diagnosis.  GP says "probably an allergy".  Never had allergies in my life.  

alapah said:

Symptoms

My impression in dealing with lung mets myself is that they are often asymptomatic, at least in early stages. I have them, they're growing, and yet I still don't seem to have symptoms as yet. You just had your TT in Dec or was that in 2011? If your tumor was small and encapsulated I think it's pretty unlikely you have lung mets, but of course I am no expert and every case is different. Still, it seems unlikely from what I know about the general behavior of this disease. That said, you should always be your own advocate and trust your senses. If you feel something is off or needs attention, I recommend pursuing it. Get a second opinion if you can. See a specialist if you can. If after all of that the diagnosis is nothing much, you will have achieved peace of mind which is pretty valuable. And if something is found requiring further action, you're on your way to improving the situation.

Seems like one of the best ways to check for lung mets is via a CT scan with contrast. I typically am given two types of contrast for those - a liquid "shake" of some barium type of solution along with an injection of iodine. I am no longer avid for iodine so there is no fear of the mega dose of iodine I am given for that scan interfering with any potential RAI treatments but in your case this would be an issue at this time since you are about to receive a dose of RAI - they're not going to order a CT with contrast prior to your upcoming RAI and WBS. Don't let anyone send you for any sort of scan with iodine contrast before RAI!

If you do happen to have mets in the lungs they likely would show up in the WBS but then again what you are experiencing may have nothing at all to do with thyca. I'm sure you still want a real answer besides "probably an allergy" and I can understand that. Is it your lungs or throat that are at issue? Do you think an ENT might be of help? They could scope your throat at least.

Are you under the care of an endocrinologist and/or someone with particularly good knowledge of thyroid cancer and how to track and treat patients with thyca? That's pretty important. You want someone who really knows how to do follow up treatment properly. 

Best to you and wishing you well with RAI. 

eileen

Thank you for the reply and kind advice.  Very glad it's probably not lung mets.  I do have a good Endo, but might need a new GP who can help me get to the bottom of this.  Very best of luck to you with your own treatments.

Sirboss said:

thyroid cancer in lung
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.

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

SutterJosh2013 said:

cancer

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

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  

tgreene1008 said:

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

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

Paula64 said:

Metastatic Thyroid CA

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

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.