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Thyroid Cancer that spread into lungs
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Jun 01, 2010 - 3:19 pm
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? |
Joined: Oct 2009
i realize i made a presumption and should clarify one thing. the most commonly used treatment for thyroid cancer, no matter where in the body, is radioactive iodine. I myself am no longer avid for iodine which means that my remaining thyroid cells will not suck it up so, for me, radioactive iodine is no longer a treatment option. your friend may likely be sent to get an RAI treatment to see if it is absorbed by the cells in the lungs. my understanding is that RAI is not always effective in reaching nodules in the lungs but it does seem to work for some. so there is hope there. i tend to forget RAI for lung mets because i am no longer able to use it.
eileen
Joined: Jun 2012
I also just found out my thyroid has metastasize to both my lungs. Just finished RAI 6/13/12 and post full body
scan 6/21/12. Don't know yet if the RAI worked or not. Will see my Dr. This Thursday. Does anybody know
How long does it takes to have symptoms of shortness of breath after diagnosis?
Joined: Nov 2012
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.
Joined: Jun 2012
Hi Bob48, thank you for responding. I am taking one day at a time enjoying each day.
Its just too frustrating when you see your labs again elevated. TG now 215 three months
ago was 168. I don't have symptoms yet. I will have repeat Pet/ Ct sometime in January
at stanford and hoping it didn't grow. Thank you again and god bless. Keep in touch.
Joined: Nov 2012
Hannah1,
Good luck next month with your Pet/Ct scan. G_D should watch over all of us and give us many more years of quality living.
Joined: Nov 2012
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.
Joined: Nov 2012
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.
Joined: Jan 2013
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.
Joined: Oct 2009
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
Joined: Jan 2013
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.
Joined: Mar 2013
I have thyroid cancer that has spread to my lungs. It took a lung surgery to get a piece of it to figure out what kind of cancer I have. First, let me describe what is in my lungs. I have 2 golf ball size tumors in my left lung, with roughly 15 marble size tumors scattered through my lungs. We discussed the partial removal of my left lung, but went with I-131 first. So below are my Thyroglobulan measurements.
This was in August 2011. In Sept 2011 I had my thyroid removed. In November 2011 I had my first 200 MC dose of I-131. Then in June 2012 I has a second 200 MC dose of I-131. My Thyroglobulan levels were as such. In Oct 2011, my level was 186, in April 2012, my level was 110, in November 2012 my level was 53. This all sounds good and I was looking forward to a last dose with the hope that it would kill the cancer off.
So, in February 2013, my Thyroglobulan level was 159. I figured that there was a mistake in the lab, and that it really was 59. Today I got the results of yesterdays test, and I am now at 223.5. Naturally this isn't what I was hoping for. We are now looking at targeted clinical trial therapies. Over the past few months, I have had a lot of aching in my arms that hasn't made sense. I have heard that there are rare cases that the thyroid cancer would spread to the bones. My current prayers is that this isn't the case, but for my thyroglobulan levels to go up so drastically tells me that the cancer has spread somewhere else.
Oh, I forgot to note, that back in May 2012, I had a radio frequency ablation done to the two golf ball sized tumors in my left lung. This is where they stick probes through your back into the tumors (while in a CAT Scan machine) and basically cook to kill the tumors.
I read where others have Thyroglobulan levels of 5 or 7, or some other number that is low, and wonder what level of cancer I have. I am currently researching clinical trials trying to find out what trial would have a TKI type of therapy that could help my situation.
Final note, I am a 52 year old male, non smoker, non drinker.
Joined: Apr 2013
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.
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