Thyroid Cancer Community
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1894899 tn?1322528073

Anyone Living w untreated thyroid cancer

I have two nodules, both large pushing 3cm I read at that stage of 3cm it has likely spread if cancer. I had FNA done and it was inconclusive, I had no idea that could even happen, inconclusive?? So they want me to have surgery and I said no. I have gone to three Dr.s and they all say have surgery. I want to keep my thyroid as I see it has great value. I do not believe in radiation or chemo. Just a personal thing with me and I don't want to argue that point with anyone. I just want to know what life is like with untreated thyroid cancer. I don't seem to get much conclusive answers from Dr.s, just bills! I have insurance, though huge deductible so I have come here for help. Why would I remove my thyroid because it "might" be cancer, it is like removing your breast because you might get cancer, far to extreme for me. If this cancer is so slow and you can live with it for years, so I hear?? Why spend all that time in surgery and in and out of Dr. office adjusting thyroid meds! I have heard so many people say they are never quite right after, depression and so forth?? I really just want to live until I die. I certainly would go see a Dr. if I broke an arm or needed stitches but I just don't feel like I want to spend my life in Dr. offices. BACKGROUND, 50% of family has died, two before age 40, one later and they spent so much time in hospital and Dr. offices, I just don't want that. I just want to know what it is like to live without treatment. I do eat well and exercise, I am trying, just not with a surgeon. Thank you for your help!
12 Responses
Avatar universal
You may ask to perform molecular testing of the specimen, such testing can provide yeas or no answer
Avatar universal
The thyroid is notoriously hard to diagnose.  For me, I had them remove 1/2 when I got the inconclusive diagnosis, they did find cancer, and I subsequently had a full thyroidectomy where they found a big tumor.  You can live just fine without a thyroid, some people are born without one.  If you don't remove it and it is cancerous, it could spread to your lymph nodes or to your lungs.  Live without a thyroid? Sure...Live without your lungs?  No way. The longer you wait, the more likely you will have complications when they do remove it.  There is a nerve that runs through the thyroid that controls your vocal function and breathing.  If the tumor wraps itself around that nerve, you could come away from a routine surgery with a permanent breathing tube.  As the nodule gets bigger, it could also swallow up your parathyroid glands, if they cannot preserve them, you will be subject to constant three times daily blood testing for the rest of your life to check your calcium levels. The dangers of leaving it there are many and life-changing.  Please reconsider or get more information.  Mine was not an easy decision, I felt much the same as you...but I am now glad I had it done.  My mind is much more at ease, I feel pretty normal.
Avatar universal
What MANmom said I did have this happen where she had to cut the nerve to the vocal chord to get my throid out, she did reattach it, but I woke up the next morning in icu intubated they had kept me sedated and intubated overnight because they had done so much work and yes I can breathe and talk but my voice will never quite be 100 percent. My surgery was supposed to be 3 to 4 hours it was 7hours because it was soo much larger than she thought ultrasound had biggest measurement as about 5cm and the biopsy said 9cm.  My fna results were negative for cancer but the biopsy found 1/2 cm on the smaller side
Avatar universal
I was told that my FNA said I had no cancer. I pushed for the surgery due to new nodules showing up, had a total of 5 at time of surgery, and several spots of my nodules and thyroid were calcifying. At my 2wk post op they told me they had found a 2cm cancer on my thyroid. I had so many AWFUL symptoms from going untreated and my dr is positive that the cancer was there for the FNA. I am very glad that I pushed for this surgery and I'm now 4 wks out and so glad I don't have it anymore. The day of the surgery I felt a million times better then I had before they removed it. The problem with letting it go untreated is that it could spread to other areas and that will be more problems that you'll want to deal with later on down the road. Just my opinion.
1894899 tn?1322528073
Thank you so much for your support and help! There are days I am so confident and days I just don't know.

898_1, molecular testing ?? I never heard of that, why wouldn't they do that in the first place?? UGHHH I mean really I had six needles in my throat, and my nodules are calcified, so it was rather hard to find a way in. I was sore for days and weeks after! I had no idea when it was being done that I might still not know??  

MANmom, thank you for your kind words and encouragement to study more! I am all the time, well sometimes I take a break from it all. I have 5 kids and an AMAZING husband I want to be around I just feel so strongly about things sometimes, like going holistic or natural or whatever you want to call it. I SO APPRECIATE no one calling me an *** or something hurtful, I am an intelligent woman and really trying to make the right decision here. I know I don't know it all and am always open to encouragement. There is just a very large part of me that simply wants to live until I die. I don't want to be having all these surgeries or taking all this medicine just to gain 3 painful months more. I would rather have three less months (just figure of speech on time frame of corse) and live without surgery n meds if at all possible. I am not trying to be foolish and have done MUCH study on this whole cancer thing for many, many years, as I have dealt with it so much in my family. I know of too many that have surgery and then chemo and still don't make it a year. And yet three months of that short 12 months was spent so ill from chemo and surgery! ??? I hope I am making some sort of sense.

CHloe65, I can't imagine what you must have gone through. I worry about that because mine are so large, and I am so rural and have gone to two surgeons and didn't want to trust my throat to either one! I know I would have to go to the city and that would be a pain in the butt. How can an ultra sound be so far off, telling you 5cm and having it be 9cm, good grief! That really concerns me that mine too could be much bigger, personally it feels HUGE. they say at 4cm they call is stage 3 or 4, and that it has likely spread. Why don't they let us see if it spread first, not after surgery?? If mine is cancer and it spread, I would just leave it all alone and go in peace.

mullinmama, what were your symptoms, sometimes at night I feel like my breathing is so difficult and then most nights I am fine??

Thank you all as I continue to try and figure this all out!

Avatar universal
I agree with mullinmama, ALL my symptoms/problems went away after they took the thyroid out.  Hoarseness, night sweats, joint pain...my thyoid was causing my body to go haywire.  

I don't think you have the right idea on the radioactive iodine.  Chemo is totally different from RAI. My RAI treatment was BARELY NOTICEABLE...you take a pill, then drink lots of water for a few days, no pain, no hair loss, no sickness.  If it is cancer and it spreads, then you will have to be treated for ANOTHER kind of cancer.  I stress that thyroid cancer is EASILY CURABLE.  I have a friend whose mother had it 30 years ago and is still fine...I think you need to look at this as surgery now, rid yourself of your thyroid and possible cancer, have a minor annoyance of taking a medication the rest of your life, OR possible cancer spreading to the lungs or elsewhere, sickening chemo treatment, ultimately a painful death...really, you must not believe that leaving it alone and dying a painful death in a few years is better than seeing your kids in 30 years or more.  I really don't understand that. Please reconsider surgery, get more information!  If you knew it was cancer for sure, would you take it out?  There is no holistic way to treat thyroid cancer. The nodule will not go away, and with calcifications and your size, you are at pretty good odds of having cancer. If it were me and I knew what I know now, I would not hesitate to have it removed.
1894899 tn?1322528073
I have read and heard by others that at this size it has likely already spread,............... I mean I would want to know before I had my thyroid removed, if I am going to die I would not want to spend my last year dealing with surgery. But they all want to cut first and do scan later?? I have talked with SO MANY that are dealing with some real tough issues since surgery! pains that no one can explain, medicine still not right after five and more years. If mine is calcified does that mean it is more likely cancer?? Joint pain?? from thyroid nodule, how does that relate? Understand I don't have a Dr. that I talk to, he just did biopsy and said have surgery, I felt like,..WHAT??? I need to talk more i have questions, I never saw him after biopsy just a phone call and letter in the mail?? What the heck! My insurance has a 10K deductible so running to Dr. for every question is not an option for me. I hate this, really I do! I just want it to go away! but I know it is not! I have so much joint pain it is embarrassing for me to get up in front of my kids or anyone because I don't want them to see me struggle to walk after I have been sitting a while. I try not to sit much when they are around or not have to get up in front of them. I have no clue what that is about. If I started seeing a Dr. for all the symptoms I deal with I would have thousands in medical bills. But sometimes I think perhaps they would conclude I am disabled and my insurance would be cover LOL, I must say I feel disabled at most times. But I want nothing to do with drugs. My WHOLE family has been addicted to pain medicine, I would rather die then put my children through that! OK I am rambling I am so sorry! tough morning and though I have ignored this for much of the last year, it is all of the sudden a constant on my mind again! This all started with a routine exam last October, my first Dr. apt in 8 years. How I wish I had never gone. Then the waiting to hear if biopsy was cancer, OH MY GOODNESS I thought it was going to kill me! Then they tell me, they don't know, What the heck! So I decide to forget it, but you can see it and I feel like crap and my neck is too big and I look like crap. So anyone know of good Dr. on the Dallas, Little Rock, Tulsa, or OKC area?? I am three hours from all those but haven't found anyone closer??
Avatar universal
Your joint pain probably is thyroid related, do you have Hashimoto's disease? The body will see your thyroid as a foreign body, then try to destroy it. I had terrible joint pain, I had hip and knee pain, my elbows hurt for several years, so much that I could not lift a gallon of milk. Sometimes there is problems with getting medication right, but in my opinion, it is an easier problem than having cancer...dying is not an option! My surgeries (2) were very easy...no pain, or at least minor pain.  I only used one tablet of the Vicodan he prescribed, the second surgery I only used ibuprofin.  You can get through this surgery without narcotics if everything goes OK. I, too, had my appointment 8 years after they found my nodules.  My body was going haywire. I knew something was wrong. Your nodules could be mostly benign and a few small tumors.  Just because they see the nodule is a certain size does not mean that is all cancer.  I had four nodules, three on the right, one on the left.  The three on the right were between 2.1 cm and 1 cm, they only found three tiny tumors (1-2mm, smaller than a pin head) in these three large solid masses. The left side had a complex structure that they were not too worried about, it ended up being the biggest tumor...1.5 cm (small cherry), almost the whole nodule.  THEY JUST DON'T KNOW UNTIL THEY GET IT OUT. Don't assume that the whole thing is cancer and that you are doomed.  You will probably eventually lose all thyroid function anyway, eventually your thyroid will probably stop working, so don't assume it will still work if you leave it in. I know, it is the NOT knowing that makes you crazy, that was the same for me.  I mulled over it for more than 6 months, but as my symptoms got worse, I took the chance that I would feel better with it out.  I did. Good luck.
1894899 tn?1322528073
Thank you SO MUCH!
Avatar universal
I had hoarseness, difficulty breathing and swallowing and excessive weight gain and exhaustion. I had severe pain in my throat ALL the time but some days it was not as bad. It took me over 2mos to recover from the FNA biopsy. When I went for my post op 2wks after the surgery I felt like I was completely healed minus the scar. The remaining joint pain that I have is from either injuries to those areas or like my hips is from having 3 kids in less than 4 years. The back to back pg's is what made my hips out of what bad. I will never regret my decision for my surgery because if it hadn't been for the surgery I wouldn't have known I had cancer. I actually think that will all the needles I had (I got stuck over 60 times) during the FNA it actually made the pain worse over the course of the following months up until my surgery.
Avatar universal
I, too, had hoarseness, being a singer that was the last straw. I was exhausted, I also had swallowing difficulties...hot/cold spells, night sweats, weight loss. I also, have never regretted surgery, and they didn't find my cancer until after the first 1/2 was taken out.
168348 tn?1379360675
Although I am very lucky, I actually feel better with 1/2 my thyroid out sustaining on Synthroid.  We did not do RAI and did not take out the other half in my case.  It's a long story, but please please please look at all the info to make a decision. I am 5yrs free of worries.

partial 1/07
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