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wondering if anyone had symptoms prior to diagnosis

grinny555
Posts: 3
Joined: Oct 2009

Hi, I am wondering if anyone felt any symptoms prior to their diagnosis of thyroid cancer? I was diagnosed with papillary cancer in aug/09, and had a TT on 9/2/09. I had pain in the front of my neck for a few months, which eventually pain went into my ears, and then constant ringing. Because of the pain I would feel my neck trying to figure out where the pain was originated from, found a lump, and from there onwards to the tests, resulting in my TT. Pathology should papillary cancer in the right and left lobes. My doctors believed that my symptoms were non related to the cancer, but right after my surgery, all my symptoms were gone. I understand it is uncommon for symptoms of thyroid cancer, but not unheard of. I am just wondering if anyone else experienced anything like this? I am 1 month post surgery, and have had none of the pain I was experiencing before the surgery, until a few days ago. Not sure what to think now. 2 senerio's - one its not related and coincidental, or two, they didnt get it all. I am not doing RAI, my doctors doesnt believe we need to. I am having my first thyroglubin test the end of the month.

LBelle
Posts: 42
Joined: Oct 2009

Even though I don't have neck pain but I do have ongoing ringing in both ears. I hope my ringing will be gone after surgery... We'll see...

grinny555
Posts: 3
Joined: Oct 2009

Lbelle, did you ask your doc about the ringing ears? I am just curious how long you have had it and what he had to say about it? I started going to the doctor in April with symptoms that lead us to where I am today. The ringing in the ears and pain started probably in june. right after my surgery, I woke and no pain (other than the surgery!) and quiet! I was sooo happy! Now that it has started again in the last few days, I dont know what to think...

LBelle
Posts: 42
Joined: Oct 2009

this is my second attempt to send this since the ghost machine ate my first comment.

I did ask the Dr about my 11 years ongoing tinnitus and she said that it's very common for deaf people (I'm deaf) to have tinnitus for many years. There's no cure for it and if you're hearing, you can use music to "mask" it. I use iPod sometimes with the volumes way up to distract and "mask" very loud ringing. Sometimes my ears would feel like burning for some reasons.

Honestly I'd rather to live with tinnitus than cancer....

cboo1974's picture
cboo1974
Posts: 57
Joined: Oct 2008

Hi grinny,

I was diagnosed with pappilary thyroid cancer on 10/9/08. I never had any symtoms. Ihad goe to the ent for sleep apnea testing to be done. His assistant found the lump in my throat which led to an ultrasound that showed I had a 4" nodule on my right lobe. I was told that many people get these nodules and very rarely are they cancerous. since the nodule I had was too large to do a medication treatment that they would normally start with I had the choice of leaving it and possibly suffocating eventually or have the right lobe removed. I also had the option to have a needle biopsy done before the surgery but the way I saw it why go through that and surgery when it's going to be removed anyways. So 10/7/09 I went in and had the right lobe removed. 2 days later I got the call that the biopsy came back positive for cancer. Never did I have any clue that I had cancer. Had no idea how long I had it. Whenever my doc. did blood tests on my thyroid they came back ok. The scary thing I learned is that they can not tell by blood testing if you have thyroid cancer. A year later I am cancer free. Still continue to have fatigue, I can lay down and sleep anytime. Though all my thyroid levels come back where they should be with the replacement. Anyways I'm rambling on. Hope this was of some help to you.
Cindy :)

LML266
Posts: 1
Joined: Oct 2009

Hi Grinny!
I was just diagnosed with papillary thyroid cancer. I had no symptoms what so ever. I was having tests done for a "spot" found on my liver, which turned out to be a clump of vessels, but during a CT Scan & an MRI for that is when they discovered pollups on my thyroid, 5 in total. I had a fine needle aspiration & that is when I found out. This is all so new & scary to me, but that was a question I had. IF I didn't have these tests for my liver, how would I have known about the cancer? My blood work always came back normal, which makes me wonder more. Good luck to you!

Rainbow2110
Posts: 6
Joined: Jun 2009

Hi

Yes I had symptons of extreme tiredness with no energy.

Doctors here in UK kept fobbing me off saying, as I'd had a baby a year before they kept blaming that, but I knew I felt different.

Then lump appeared on neck after a virus which then was followed up further with scans & biopsys, eventually taken out begining of this year to be advised it was papillary cancer

Hope this helps & goodluck

ibeatcanser
Posts: 47
Joined: Aug 2009

wow, I'm deeply amazed how many people (including myself) had absolutely no symptoms that lead to my diagnosis. Like some others, I went for an MRI that was completely unrelated and the technician saw the two nodules. Consequently I had an ultrasound, that led to the fine needle aspiration and then papillary thyroid cancer.

I've always had the mindset that things happen for a reason. If I didn't have that MRI, how long would it have taken before my cancer was diagnosed? I never even knew Thyroid Cancer existed.

Niecee
Posts: 2
Joined: Dec 2009

Just had an ultrasound on thyroid last Friday to check for nodules as I have a sizeable goiter. Even on thyroid meds for low thyroid I have constant fatigue and now have symptoms of bone cancer...got me really worried! Won't know test results till Tuesday at earliest (Dec. 15, 2009).

lori d
Posts: 6
Joined: Dec 2009

i have had ringing in my ears for years! sadly - it didnt remedy since my completion thyroidectomy 11-10-09.
wild that so many of us have that! is anyone paying attention to this info?

also wanted to ask - why so long for 1st thyroglobulin test? i havent had one yet either - dr. say wait... just wondering if you know what the reasoning is.??

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

Hi,

I experienced ringing in my ears as well. Occasional pain behind my ears sometimes too. Like sharp shooting pains from time to time back there. Other than that most of my symptoms were all over the place. For almost a year before my Papillary Carcinoma diagnosis I had noticed my energy level had depleted. My sex drive was diminishing, my overall feelings from day to day were off and it was getting pretty bad. I was experiencing intolerable hot flashes and bouts of being very cold accompanied by sleepless nights, weight gain, puffiness in the face and I just really felt bad all the time. I was finding myself isolated more and more and wanting to stay in instead of going out and enjoying the things I used to take pleasure in, like spending the day at the beach with my wonderful husband and just going and visiting friends and family. These reason's prompted my primary care dr. to test my TSH levels, came back Hypothyroid so they just stuck me on some Synthroid. Obviously that didnt do the trick and they ended up overmedicating me and turning me into Hyperthyroidism. Never feeling better I wized up and went to an Endocrinologist. Thank God for Endocrinologists! She found the cancer right away!!! I had such a bad reaction to all the med's after my Total Thyroidectomy, only when I started recovering from all the med's did I feel so much better. I am not experiencing the ringing in my ears or the pain behind my ears anymore, now it's more like stabbing pains, here and there in the actual surgical site and I know that's only because I am starting to get feeling back in that area due to healing!

Good luck!

BellsAngel69
Posts: 102
Joined: Dec 2009

I have absolutely no symptoms either before I was diagnosed with thyroid cancer. I had just done a new class at my gym using a large exercise ball. My neck and shoulders were very tight and sore, so I was massaging my neck. By chance, I hit a lump under my collar bone, about 1 1/2 inches long. I knew it wasn't normal.

The only thing that happened to me, was about two weeks before I found the lump, I was walking and felt very light headed and fait. That had never happened to me before. I just dismissed it. After I found the lump and went to the doctor my blood pressure was 200/100. My bp was very high, probably because my thyroid wasn't working. Besides that, nothing. When I had an ultrsound of my neck, it showed I had nodules, but when you felt my neck, you couldn't feel amything out of the ordinary. None of the doctors could feel anyting abnomral.

That's what's so bad about Thyroid cancer. Most times you have no symptoms and don't know anything is wrong until you find a lump or are diagnosed by chance.

Monijo
Posts: 6
Joined: Dec 2009

I didn't know my symptoms were because I had cancer, I thought it was just Hashimotos. I was extremely fatigued. I was always swallowing because it felt like I had something stuck in my throat. The biopsies never detected cancer. I was high risk, so I went to a surgeon to ask him to remove it. It was after surgery that I found out my thyroid and lymph nodes were covered in it. I must have had it a long time, but unforunately it was diagnosed as low-thyroid and Hashimotos.

BellsAngel69
Posts: 102
Joined: Dec 2009

It's funny how the let it go, huh, tell you it's just symptoms of your condition. But your body told you different and you did something about it. Otherwise, you still might not know.

bribeauty25's picture
bribeauty25
Posts: 10
Joined: Jan 2010

I was recently diagnosed with follicular thyroid cancer. Prior to being diagnosed I had an overwhelming feeling of fatigue and just overall did not feel like myself. I would occasionally get a tingling tongue, it felt like my tongue was falling asleep, mostly when I was eating or talking a lot. At first the doctors told me I was depressed and that I was having panic attacks! I had to switch doctors for someone to listen to me!!!!!!!!!!!! Thank God I did or I would still have cancer growing inside me! I think sometimes the symptoms can be blamed on other more common ailments that doctors typically don't look for the "rare" cancer..
Did any one else have a tingling tongue?

leslieroberts35
Posts: 1
Joined: Jun 2010

I am setting here alone and scared. Just got diagnosed and waiting for date for surgery. I have been down a very long path to get to this point and feel like I have had to fight my way here. My tongue is tingling as we speak and that is how I found this post on google. Neck and jaw hurts. Tinnitus and an ear infection is how I started this journey. I have now lost 30 percent of the hearing in my right ear.
I have seen so many doctors and it is insane that it took me 6 months to get help. Why do they not recognize these other symtoms? So many are effected by them but even when I talk to the Endo that diagnosed me about these symtoms he dosnt seem to think they are related or not important. I really hope the ringing and the tingling goes away!!

grateful1
Posts: 81
Joined: Jun 2010

YES, I HAD PAIN IN THE LEFT SIDE OF MY NECK AND EAR AND SHOULDER FROM DEC., 09 ON. AFTER SEEING MY DENTIST TO RULE OUT TMJ AND GETTING A SLEEP NO BED, I WENT TO THE THYROID DR. WHO DID ANOTHER SCAN. HE HAD DONE ONE IN 2006 AS I WAS IRRADIATED AS AN INFANT FOR ENLARGED THYMUS BUT HE DIDN'T TELL ME A NEW NODULE WAS ON THE LEFT SIDE. I HAD A GOITER ON THE RIGHT SIDE FOR YEARS. I GOT A NEEDLE BIOPSY IN 2010-FEB-AND THEY FOUND IT TO BE MALIGNANT. I WENT TO SEVERAL SURGEONS--IT WAS DIAGNOSED AS POORLY DIFFERIENTED THYROID CANCER -VERY AGRESSIVE. THEY TRIED TO REMOVE THE TUMOR IN APRIL 2010. THEY COULDN'T. BUT THE BIOPSY THEN SHOCKINGLY CAME BACK BENIGN. THE PAIN HAD DECREASED. I HAD BEEN TAKING SUPPLEMENTS. I AM NOW GOING TO TRY IODINE TREATMENT--THE TUMOR STILL HURTS. GOOD LUCK

inGodItrust
Posts: 1
Joined: Aug 2009

I didn't realize anything was wrong. It started out with me one night finding a lump behind my right ear. Naturally I became concern and the following day I showed the school nurse. She immediately was concerned and pointed out that I had a swelling in my neck as well. I had not noticed. She had me schedule a doctor's appointment immediately. (She later told me that she feared I might have lymphoma). The doctor ordered blood work and an ultra sound of my neck which showed nodules on my thyroid. The swelling behind my ear he said was totally unrelated - some type of viral infection for which he gave me antibiotics. The way I look at it God caused the swelling behind my ear knowing I would notice that. The other symptom I had came shortly after the swelling behind the ear. My scalp itched and burned fiercely. It was a weird sensation. I was so concerned that I had the school nurse to check and see if I had lice. I did not. She told me it was probably because of my thyroid. I asked my ENT. He said no, but it completely disappeared after my second surgery removing the rest of my thyroid.

weberdns
Posts: 156
Joined: Mar 2010

I had no symptoms at all. My thyroid hormone studies were normal. My doctor noticed a slight swelling on side of my neck...so slight that you couldn't really even notice it. Because of the tumor location you couldn't even palpate a nodule. His observations saved my life. After my RAI I am now having itchy skin, visual problems, but have been assured that these will clear up after I get my thyroid levels to where they want them to be.l

reddyvaribabu
Posts: 3
Joined: Jul 2009

I was diagnosed with papillary cancer on jul 10 2009, I didnt have any symptoms other than small swelling on the left part of my neck.

Pdotk
Posts: 2
Joined: Dec 2010

In 2007, I had an MRI for a spinal issue. It stated there was a 3*mm lump on my left thyroid gland. They said it must be imaged to figure out what it was. The doctors did nothing. In 2010, I began having issues, coughing, hoarseness, trouble swallowing, and a visible growth. It got so bad that when I turned my neck, I would get very dizzy and actually passed out once. I finally showed the doctors my records and convinced them to give me a scan. A month later, I had a 2 staged TT and they removed an 8.5 CM. cancerous growth. Now I am waiting to undergo RAI after the first of the year. If you think something is wrong with YOUR body, Don't stop until you find out what's going on!!!!
Thanks,
Karen

swt_reyes
Posts: 28
Joined: Nov 2010

I do not know if I have thyroid cancer yet but I have to have a complete thyroidectomy b/c the nodule is so large I am having problems breathing as well as there are several other small nodules. My ears have been aching and have been for a very long time. I do not have an ear infection, but if I sleep or lay on one side for too long my ears begin too ache. I have been extremely tired but just though it was from having 3 children; I am beginning to think otherwise! I think these symptoms can be related but the Doctors just have no solid proof that they are tied together so they cannot say either way, so they chalk it off as no.

I have other symptoms but I don't know if they are related. My finger tips and toes go numb sometimes, which I have been told that's just poor circulation. I have always had very dry skin and my head itches and tingles a lot, I even get sores on my scalp. This could just be due to the dry skin, which is likely the cause.

I wish all you well on your journeys of life!

~Christy~

amorriso
Posts: 186
Joined: Oct 2010

Hi there. I had some of the same symptoms as you described but my doctore didnt pay much attention to it. I was always tired, had earaches -mainly on one side, dry skin and scalp, and my arms were always going numb especially when I slept. Since my surgery the ear ache is gone, my arms/hands dont go numb anymore - I think those symptoms were caused by some of the affected lymph nodes that were pressing on my jugular vein - scary thought - but I noticed a huge change now that they are gone.

The dry skin and tiredness are slowly getting better now that I'm on thyroxine.

I hope everything goes well for you - good luck and keep in touch.

Andree

Bob20000
Posts: 3
Joined: Dec 2010

Hi Grinny;

I went in to have an ultrasound for a lipoma on my neck. That's when they found 2 nodules that turned out to be papillary carcinoma. Didn't have any symptoms as far as the Tyroid.
Surgeon removed the lipoma at the same time he took out my thyroid and now I can swallow a lot better. I think the lipoma was obstructing my esophagus.

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