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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?

alapah's picture
alapah
Posts: 256
Joined: Oct 2009
alapah's picture
alapah
Posts: 256
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

Hannah1
Posts: 62
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?

Bob48
Posts: 3
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.

Hannah1
Posts: 62
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.

Bob48
Posts: 3
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. 

Rav4
Posts: 3
Joined: Dec 2013

We are going through the same thing with my husband.

MONEL
Posts: 3
Joined: May 2013

My husband still is short of breath.  His tumors on his lung started to bleed.  His lung collapsed.

They went in and finally stopped the bleeding after they tried twice to drain the blood.  He had drains in his chest and lung.

Good luck

 

LorenaRN
Posts: 12
Joined: Jan 2014

What stage was your thyroid cancer, how long did you have it? Was it calcified nodules? They are usually encapulasted.

I have rarely hear of thyroid cancer going to the lungs, this must have been going on for some time.????

I certainly would demand treatment for the lung nodules.

My family physician has me take pharmaceutical grade antioxidants that can fight cancer. one is from grapes, one from broccoli.

I certainly would get another opinion, you cannot sit around letting your lungs be ignored.

LorenaRN
Posts: 12
Joined: Jan 2014

What stage was your thyroid cancer, how long did you have it? Was it calcified nodules? They are usually encapulasted.

I have rarely hear of thyroid cancer going to the lungs, this must have been going on for some time.????

I certainly would demand treatment for the lung nodules.

My family physician has me take pharmaceutical grade antioxidants that can fight cancer. one is from grapes, one from broccoli.

I certainly would get another opinion, you cannot sit around letting your lungs be ignored.

LorenaRN
Posts: 12
Joined: Jan 2014

What stage was your thyroid cancer, how long did you have it? Was it calcified nodules? They are usually encapulasted.

I have rarely hear of thyroid cancer going to the lungs, this must have been going on for some time.????

I certainly would demand treatment for the lung nodules.

My family physician has me take pharmaceutical grade antioxidants that can fight cancer. one is from grapes, one from broccoli.

I certainly would get another opinion, you cannot sit around letting your lungs be ignored.

cjb0623
Posts: 1
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.

Bob48
Posts: 3
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.

Hmolson
Posts: 3
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.  

alapah's picture
alapah
Posts: 256
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

Hmolson
Posts: 3
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.

LorenaRN
Posts: 12
Joined: Jan 2014

WTH are they waiting for???? I see many law suits here, people you have to be your own advocates!!!

LorenaRN
Posts: 12
Joined: Jan 2014

WTH are they waiting for???? I see many law suits here, people you have to be your own advocates!!!

MONEL
Posts: 3
Joined: May 2013

Your saying you could live with Thryroid lung cancer for a considerable time? 

uvrosbur
Posts: 1
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.

 

 

Rav4
Posts: 3
Joined: Dec 2013

Hi,

 

How are you doing.  My husband has lung nodules too that are from his thyroid cancer.

LorenaRN
Posts: 12
Joined: Jan 2014

You must PUSH, PUSH and no delays.. be your own advocate! Best of luck!!!

LorenaRN
Posts: 12
Joined: Jan 2014

You must PUSH, PUSH and no delays.. be your own advocate! Best of luck!!!

sophiadonald
Posts: 1
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.

Joey Atlas Reviews

LorenaRN
Posts: 12
Joined: Jan 2014

As an RN, I would run to get another opinion!!! Better be safe than sorry... Best of luck. Lorena

MONEL
Posts: 3
Joined: May 2013

Veronica,

My husband has Poorly Differeniated Thyroid Cancer.  We have been battling this since last July.  He had his Thyroid out, Vocal Cord and several lymph nodes.   They did not care about his lungs @ first until they got worse.  He is also on Nexavar.  Hopefully, it will keep the desease under control.

Keep up the fight.

 

miladyx
Posts: 85
Joined: May 2009

is your husband MONEL?

LorenaRN
Posts: 12
Joined: Jan 2014

Write down your concenrs, I was so nervois I forgot, left without getting a return to work note.

Keep asking until you get answers!!! I have a great group here in Fl, and they call me with answers.

I just for got a few questions today... ; )  Thinking positive!!!

Lorena.

LorenaRN
Posts: 12
Joined: Jan 2014

I was dosed this morning Jan 2,  at 10:30 with what they said was a low dose of Radioactive Iodine. My complete thyroid was removed Dec 5th.

My concern is my family. I have my little dog away, large dog fenced in house away from me.

I asked if I should use a mask and rubber gloves around house, workng on my lap top and was told no, it dies off in a day or two.

I sent my son to his girlfriends, he's in college.

My boyfriend is not staying here for the next couple of days.

When can I have any type of contact with my boyfriend? A single hug will do.

I requested a note to return to work on monday because I was originally told 3 days isolation, now they are telling me I need to continue to stay away from pregnant women and children , for how long??? And how long on staying away from my boyfriend?

Help, lorena

Williamryan
Posts: 27
Joined: Dec 2012

Lorena,

I initially had a high dose of RAI 30 days post surgery (removed thyroid and 24 lymph nodes - only 9 were cancerous).  According to my endo doc (he is listed as one of the best in the area (Dr. Wayne Evron) and told me to isolate myself in my own home for 10 days, drank a lot of water to flush out the RAI.  After 10 days, I was fine with being around people of all ages.

And you are correct...YOU MUST BE YOUR OWN ADVOCATE!  Be aggressive, assertive, pushy, ask questions and clarification for any response.  This is an unusual type of thyroid cancer and not many docs are aware of it's potential.  Very little treatment options.  There have been clinical trials, especially at MD Anderson (Houston, TX) and Memorial Sloan-Kettering - MSK (NYC).  I tried to get in to a clinical trial at MSK but they suspended the trial :(

You'll do fine with the RAI treatment. 

Bill

Sarah100's picture
Sarah100
Posts: 3
Joined: Jan 2014

I'd like to know how you are doing with this.

Sarah100's picture
Sarah100
Posts: 3
Joined: Jan 2014

I'm a 12+ year survivor (since 2001) of stage IV papillary thyroid cancer with lung metastases, first seen in 2005 wanting to be in touch with other thyroid cancer patients with lung metastasis. I feel an uncomfortable level of tightness in my chest with some shoulder and arm pain. My wonderful doctor thinks part of the pain is tension. This is a slow growing cancer, etc. etc. so my life is not at risk. But I would very much like to be in contact with others who have similar circumstances, since this is not a common part of thyroid cancer. I can be reached at oursacreduniverse at gmail dot com. Thank you!

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