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Thank you for sharing your stories!
My thyroid cancer was found by chance. I originally went to my primary for PCOS. My primary suggested that I see an endocrinologist and I did. After a few visits with her, she decided to evaluate my neck and felt a lump. I was sent to get a biopsy done a few weeks later (around the end of April 2012). Everyone assured me that it most likely would not be cancer. During this process, I had gotten accepted to a pharmacy school. I was super excited and would be going to school Fall 2012. So the thought of even having cancer was pushed back in the back of my mind. I decided to quit my full-time job, take my public speaking course (last requirement for acceptance into pharmacy school), and then travel to Europe before pharmacy school. Everything was set in stone and I just couldn't wait. But on May 21st, I was alone in my apartment when I received a call from my endocrinologist. He had informed me about thyroid cancer - I couldn't process much of what he was saying at the time. I only had the word cancer ringing in my head. All that I had planned for.. was disappearing before my eyes. I was devastated. I ended up moving back to my parent's house in another state and transferring all my health records to new doctors. I had a total thyroidectomy surgery on June 25th and still awaiting to undergo RAI treatment.
At the age of 18 during my physical for college I was told that I needed to get my neck checked out specialist because there was a lump on my neck that had gotten larger. My dr. told me she wouldn't send my physical in unless I got it checked. The specialist told me I was healthy and young and that I had a 1% chance of having cancer...I choose to have the lump removed. A week later I went back to have my stiches taken out and the Dr. told me I could possibly have cancer and that they sent my sample to the Mayo clinic for a 2nd opinion. My mother flipped out but I was scared I might not get to start college on time. The word Cancer never sunk in. A week later we went back to hear the results the Dr. then informed me that I did have thyroid cancer and that we would remove my thyroid do some radio active iodine treatments and I should post pone 1st year of college. I still never heard the word cancer just that I would have to wait to start school. My mother was crying...and I flipped out and told the Dr. I was starting school on time and I didn't care what we had to do to take care of the cancer but it didn't matter. He looked at me like he was scared and asked if I was mad about him suggesting I take a year off. I told him yes and that there was no way in hell I would listen. That following week I had my thyroid removed...I changed my major from Bio to Nutrition & Wellness...I was orgnially going to go to college to be an oral surgeon. I basically lived in hospitals and waiting rooms. I did my treatments....That Aug. 2006 I started college...my family moved me in and I was too weak and sick to carry anything. I bounced back in a few weeks. During college my Dr. would take my medicine totally away for 6 weeks and would make me miserable and she would test my blood to make sure there was no thyroid tissue left. There never has been any left. I now have a new Dr. and we do not do hormone with draw THANK THE LORD! My new Dr. also has me feeling the best I have ever felt in years!
Fighting to be Fit
3gkids, you are in the whirlwind right now, it is almost surreal. Hang in there, you are going to be fine, sorry he cut your vocal cord nerve, that is a common complication, that is something my ENT talked about before the surgery, he said he spent more time locating the cord and nerves than removing the thyroid. You will probably have the RAI, that is so much fun..LOL It is ok, just follow all the instructions, stay calm. I lived on popsicles after my surgeries, became a connoisuer of popsicles, brand name with real juice are the best.
My doctors told me this was just a bump in the road and that everything would be fine, they were right! (but is is a big deal)
Thank you for your encouraging words. While getting out the mass (off right lobe), the ENT cut the nerve to vocal cords. Biopsy of lymph node was positive and nodules on left and right lobes were positive for the papillary thyroid cancer. Dr said that there is a fix for the vocal cords, but first, he'll coordinate with my Endocrinologist for treatment.
Glad to hear that there is life after thyroid removal and cancer.
"An eye for an eye leaves the whole world blind." -Mahatma Ghandi
OK, I went in for a routine physical in October 2007, and my doc was feeling my neck, got a funny look on his face, and asked me if I could swallow, to my surprise, I couldn't, I said maybe if I had some water I could, and he whipped around so fast my head almost spinned, turned around with a dixie cup of water. He had me drink it while he felt my neck, and said, you have a nodule, I am sending you for an ultrasound right away. I have been hypothyroid since my early twenties, and have only had one ultrasound ever. He had his staff schedule the procedure for me, immediately. My doc is very positive, and never tries to scare me, but I could tell this was serious. At the ultrasound, the tech told me I had to wait for the radiologist to read my results, but they were abnormal, and I could see on the screen "2cm" and the blob. After that was sent to the Ear, Nose and Throat doc, who suggested that I have the left lobe removed, because it was a cold nodule, and the size of it warranted removal. The ENT said needle biopsies were not reliable, and in my case a waste of money. The ENT was very positive also, said not to worry, they could handle anything that came up (like cancer, for example). Went in for the surgery, initial pathology looked good, so they closed me up, spent a night in the hospital, and they sent me home after removing the drain. three days later, the ENT himself called me, I missed his call, the voicemail said we had to discuss my pathology..thats when I started crying, because I knew it was cancer, without him even saying it. So, I had to go back in and have the second surgery exactly two weeks from the first surgery, he used the same incision site, they had me in ICU, just to check my calcium every four hours. Mine was both papillary thyroid cancer and follicular carcinoma, stage 2. Thank God, it had not metastasized, and I still have my parathyroids intact. Also, this gifted surgeon was very careful not to injure my vocal cord, I am still a soprano. I had a very high dose of RAI, had to be in isolation for a week. Now I see an oncologist every year, and do the low iodine diet, but have been able to do the Thyrogen protocol after the first year. I am starting the low iodine diet monday, and do my Thyrogen shots the following week, then the full body scan. Two more years and I can declare victory! I take Synthroid and Cytomel, and I feel great (now) I really have suppressed the memory of a lot of the discomfort and fatigue, it was very hard to endure. I still feel very blessed, I see folks at the cancer center coming in for chemo and radiation, and I just shudder. BTW the surgery was a breeze for me, a bit much two weeks apart, but walking into a cancer center, knowing I was the patient was the toughest thing for me to handle, still is.
Edited by: JOYFUL711 at: 3/3/2011 (22:16)
Surgery is scheduled for Monday morning, 2/28. Will be back to post later. Ruth
"An eye for an eye leaves the whole world blind." -Mahatma Ghandi
I'm not sure if I should have read these stories tonight. I'm going for a needle biopsy of my thyroid tomorrow morning. In December, I had an Ultrasound that showed an enlarged area with nodules in both sides. Took over 2 months to the first appt. and the doctor's office made a follow-up appoint. for 2 weeks to get biopsy results. I'll be back, just not sure when. Thanks for sharing your stories. Ruth
"An eye for an eye leaves the whole world blind." -Mahatma Ghandi
Im so happy I found this team!
I have a long story also. Ive always been an athlete. I played every sport there was through high school. I played on a super competitive soccer team in college. I've run marathons. In 2000 it started... I had my first miscarriage. After that I had 5 more through 2007. When my husband and I finally saw a reproductive endocrinologist to figure out why they had no idea. The only thing was that I had anti-thyroid antibodies present. And a nodule on the right lobe. It was biopsied (repeatedly!) and was just thought to be a complex cyst.
In 2008 I was pregnant for the 7th time. I was on a low does of levothroid. I was on bedrest and sick sick sick! My 'nodule' grew as I did. By 36 weeks pregnant it was very pronounced and I had trouble swallowing at times. I had my daughter in June of 2009! AMAZING!
I went to a check up after I had my daughter and another biopsy (yay) was performed. It was stilll thought to be a cyst, but we decided to remove it because of the difficulty swallowing and coughing.
Oct. 2009 was my first surgery. It was a Monday (the day before my anniversary). It was an easy surgery I thought. I was just supposed to have my right lobe removed. I went home the next day and felt fine. On Thursday the surgeon called and told me they removed 2 lymph nodes along with the lobe and they all had cancerous lesions. They also were tall-cell variant. I was to go in the next day for the left lobe to be removed and as many lymph nodes as they could get to. Two surgeries in one week was not ok. The second one was awful! I felt horrible and about a week later started swelling up (like I swallowed golf balls) and leaking lymph fluid. They didnt put in a drain! I was out of it for about a month. Luckily only the first 2 lymph nodes (out of a total of 25 removed) were affected. Unfortunately, my parathyroid was also permanently damaged.
I had RAI as an inpatient in Feb. 2010. I was supposed to go for a scan in Dec. 2010, but have put it off. I found out in August that I also had an early melanoma, so I just need a cancer break for a bit. I'll go for my next check up in March 2011 most likely.
I am on 175mcg of levothroid/day, plus HUGE amounts of calcium.
Hello, my thyroid cancer story is hopefully coming to a good end soon. It's been over a year since I found out I might have cancer, about six months since I found out that I do, and I'm three months out from my radiation treatment. I went to a doctor originally to find out how healthy I was to start a family. That doctor felt my thyroid as part of the general physical with no issues. She suspected, however, that I had PCOS, which was confirmed. She then sent me to an endocrinologist to work with that. That doctor felt my thyroid and immediately said that we need to put the PCOS aside for a little while because he felt a fairly large lump. After 2 biopsies they couldn't tell whether or not it was cancer. He left it up to me whether or not I wanted to have the surgery to find out once and for all, or wait and do another biopsy later. I chose surgery, and they took out the right side of the thyroid. It was cancer, so a few weeks later I had the second surgery to remove the other half. That side had a teeny spot of cancer starting. My energy levels went crazy low quickly, and I was excited to finally be able to start on Synthroid. I have been taking it for awhile now and the dose was upped for the first time a month ago. I finally feel like my energy is beginning to go up and stay up, but I still have a ways to go. My follow-up full body scan will be this spring, just before my 30th birthday. I hope it is good news, as I want to be given the go ahead to hopefully start a family. I look forward to hearing other people's experiences and how they might be the same or different from my own. Sorry this is so long!
Hi all! I am new to the team and newly diagnosed with thyroid cancer (though hopefully it is gone!). My story started over the spring of this year where a CAT scan for a heart condition that I have showed my right thyroid lobe as extended with a small nodule in it. My former doctor said it was something to watch out for, but never ordered tests to follow up. Throughout the summer the lump grew and by the end of September I knew there was something wrong - I went back to the doctor and asked to have the tests. I had an ultrasound on a Thursday and by Friday the results came back that I needed to have a biopsy.
As luck, fate or whatever would have it, my boyfriend's stepmom is a doctor and she connected me with the best endo and endocrine surgeon in the state, both of whom are fabulous. Thank goodness for family! :) The biopsy showed suspicion for thyroid cancer. Two weeks ago I had a total thyroidectomy, including the removal of some of my parathyroids and a lymph node that had metastasized. I am currently on levothyroxine, calcium and vitamin D supplements. The surgeon is hopeful the other paras will kick in and I won't have to be on regulators for life. The endo will most likely have me do the RAI scan and the iodine treatment next month, although I am hoping there's a chance I won't have to have it.
I actually feel really good, better than I expected I would or read about, and am looking forward to getting back to yoga and the gym. I'm hoping the medication will be leveled out quickly and I vow to stay active and healthy. It is stressful, but this occasion is also a blessing in disguise for me and has reminded me how important health is! I'm glad to have found a group to share stories with.
FiercestCalm - I laughed at the part of your story because I also told people that I got in a fight with a pirate! Too funny.
"Accept everything about yourself - I mean everything, you are you and that is the beginning and the end - no apologies, no regrets." -Clark Moustakas
wow amazon. what a story! glad to hear things are looking up for you. I wish you continued strength on your journey.
you're just an empty cage girl, if you kill the bird....Tori Amos.
Hello everyone! My cancer story begins in 2006, I was pregnant with my daughter and was sick from the beginning. Finally after six months my OB sent me to my regular doctor because something was wrong but she couldn't pinpoint it. My regular doctor ran some tests only to discover my thyroid is acting up. He brought in an endocrinologist who ran more tests including a fine needle aspiration and ultrasound. The ultrasound showed 2 lumps; one on each side of my thyroid. The aspiration found the cancer.Papillary thyroid cancer to be exact. I wasn't even home 30 minutes from the aspiration when my doctors nurse called and said he wants me to come back to the office. I knew that he didnt have good news. They said as soon as my son got home to come down to the office. I called my mom and met her and her boyfriend in a store parking lot, where her boyfriend took my son back to his house and my mom rode with me to the doctors. My then boyfriend(current husband)was at work and trying to get off so he could be there for me. We made to the doctor where he told me that they had indeed found cancer, mind you I am still pregnant and due in about one week. As soon as my doctor told me I began to cry, my mom ended up asking the questions and talking to my now husband and giving him the news. I was told I had 3 weeks to bond with my daughter and could not breastfeed her then I was to schedule my surgery. Well I had my daughter that week(May 5th)and had my surgery at the end of the month. After having my thyroid and some lymph nodes removed, I am happy to say that I am cancer free to this day.
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team
I was excited to find this team and have other people to share the story with. It's hard to understand for most since it seems the thyroid is the most misunderstood and ignored gland in the body, even with all the important functions it has. In 2002 I had a benign cyst/tumor removed from the left lobe of my thyroid. All the biopsies and scans and blood work came back benign. Fast forward to 2009-I was having a lot of trouble with my legs. They were just so weak! I thought maybe it was the weight I had gained while I was pregnant, the varicose veins from working on my feet while I was pregnant (I do hair and nails). Well, after dropping my children off at my parents for them to watch, I had to have my Dad come help me up the outside steps because I couldn't balance or pull myself up at all. They made me stay there and took me to a chiropractor who said he couldn't see anything that would cause the weakness in the x-rays. He adjusted me and sent me home. That was Tuesday, by Thursday I couldn't walk at all. My husband called the squad and took me to the emergency room. After being examined by the doctor the best he could suggest was that I see my family doctor because I looked a little flushed and should get checked for lupus. Somehow we got home and me into bed, I don't even remember anymore! The next morning I called a neurological chiropractor hoping he may have a different take on my situation. He had me come in right away and after examination he sent me straight to the other hospital in our area and made a personal call to the ER physician. He was worried I had a neurological infection of some sort. After 3 MRI's they found a fracture in my T2 vertabrea that was filled with infection and was compressing my spinal cord and causing all the weakness. So, within hours of the second hospital visit, I went from the ER to ICU to surgery. The surgeon removed a goopy mess from my vertabrea and did a bone graft to fix my spine. After sending my pathology to the Mayo Clinic, Cleveland Clinic and several other pathology labs, they concluded that the infectious tissue was thyroid cancer and was from the original benign cyst that was removed way back in 2002. So, after doing rehab and practically learning to walk again, using a walker for several months, I had a complete thyroidectomy, removing the rest of my thyroid, my parathyroid and 125 surrounding lymph nodes. Amazingly, it all came back clean. No cancer in any of those tissues, just the old tissue from the "benign" cyst. The cancer had metastisized to my vertabrea, but not the other similar tissues. I did 21 radiation treatments on my T1,2,3 vertabrea and the I-131 radioactive iodine. My endocrinologist is amazing and takes care of nearly all my treatments and I see an oncologist regularly also. I take 3,000mg of calcium, and D, magnesium, and synthroid. I'm 28 years old and have two toddlers. The last thing I ever thought I would hear at this point in my life was that I had cancer! The doctors were amazed that it was thyroid cancer, because I had no prevalent thyroid symptoms. Even before doing my treatments when I had to be off of synthroid I didn't get many hypo-symptoms. That's my crazy story. It seems I'm not the only one that was hard to diagnose! Good luck everyone and I look forward to sharing more!
Quote of the Day
Those who bring sunshine into the lives of others cannot keep it from themselves.
James M. Barrie
Welcome to the group VANROW. Sounds like you have gone through quite a bit. I'm glad you're finally feeling better!
“Fall seven times. Stand up eight.” Japanese proverb
don't cry because it's over, smile because it happened. ~ dr. seuss
You gotta read this one!!!
Strange story... Lots of questions that I may never have answers to...
I was 20, healthy, in shape, ideal weight, doing extremely well in college.
Suddenly everything changed, I became depressed, anxious, I started gaining weight, about 20 lbs at first. I got referred to a top Thyroidologist. The first time I saw him, get this, he walked in and told me I had hashimoto's thyroiditis. This is a top doc in the country who treats the rich and famous, ok? He did no bloodwork at all hadn't even examined me and told me this. Then I saw him for 4 years, either once a year or every six months. This is where it gets weird. They did these weird blood tests on me where they'd inject me with some stuff and that would make my blood warm like a warm rush similar to contrast dye for a CT or MRI. I still don't know what this test was. Then they'd take my blood after 30 minutes.
I had this mysterious test 3 times or so. Then on my last visit, he said all my levels looked good so he didnt see the need for me to take Levo. So I asked him, "well what about the hashimoto's thyroiditis". He said "You don't have hashimoto's thyroiditis, it's no where here on your chart." I was floored because for 4 years I thought I did. He had no memory of telling me that I did on my first appointment. The only explanation for such an error was he must have been reading the wrong chart.
So I ended up thinking things were ok, still having all the hypo symptoms and attributing it to PMS. So my gynecologist puts me on birth control then and I quickly gain another 30 pounds literally in a few months.
So now I'm 50 pounds overweight, miserable, sick. And no one believes it's the birth control pill making me blow up, so I just stop it. I went to another gynecologist who put me on decadron to just lower one androgen. It made me gain another 35 pounds and angry all the time, so now I'm 24 and 85 pounds heavier than I was at 20. And miserable sick.
So I quit all the meds, got on a healthy diet, exercised, and was able to loose 45 pounds from 2004 to 2006. I still felt awful a lot, and from 2006 to last year I was going downhill, I never wanted to do anything on the weekends, and I basically dragging myself to work.
My allergies got worse, I continued to have annual thyroid bloodwork that always came back normal.
Then last year(2009) my allergies got out of control, went on allergy shots, but was having weird reactions the nurses couldn't believe. My thyroid in one month went from "slightly enlarged" to serious lumpy nodules. I went for all the tests, but I knew during the biopsy when the radiologist gasped in surprise and the tech shot him a "shut up" look!
The thing is, I NOW got diagnosed with Hashimotos Thyroiditis, AND thyroid cancer which turned out after the pathology reports, was 10 YEARS OLD, right in line with WHEN I WAS HAVING THOSE MYSTERIOUS BLOOD TESTS WITH THAT DOCTOR WHO COULDNT EVEN MATCH THE RIGHT PATIENT WITH THE RIGHT CHART.
I think whatever they did to me GAVE ME THIS CANCER!!!!!
But how do I prove it?
So I had the thyroidectomy in October, the RAI in December, with some problems with both. My surgery had complications and lasted 7 hours and I have 6 tiny titanium clamps on some veins in my neck forever. The RAI was at a horrible hospital where they didnt give me an IV when I couldnt drink cause I was sick from the RAI. I think my once perfect teeth are finally gonna get cavities now!
My endocronologist who I will soon leave to find better one, because he simply could give 2 poops about me, suggested I get on antidepressants since I feel horrible on the high dose of T4 he has me on. In my case I have to be on an elevated dose to supress thyroglobulin, to prevent a recurrence of cancer, since mine had spread outside the thyroid into my neck.
Since after the RAI I have had dozens of problems. My endo totally missed the fact that I had critically low on B12, D3 and Iron, and I was making no progesterone. I went to an anti-aging doctor who got me straight on all these supplements and now I am finally feeling better. I know my by-the-book close minded endo is gonna hit the roof when he finds out I'm taking bioidentical progesterone. But hey if I had almost zero, then I should supplement it, right?
I feel better than I have in years, does that not count for something, he'd rather I get on drugs that will just do more harm then good then?
I have a distrust of conventional doctors after my experience.
So if you are like me, recovering from a throidectomy and feeling awful, please, check your B12 and D and Iron!
And don't let them do anything to you that you don't understand. I was young and naive back then and didnt really understand the purpose of those tests especially since no other doctor since could tell me what they were. I didn't know what I know now at 33.
I am trying not to look back in regret, that the best years of my life, my 20's and early 30's were spent in sickness without knowing what was wrong with me. I am moving on.
Edited by: VANROW at: 8/1/2010 (18:12)
I wish you luck with your future surgery.
My "nodule" was discovered at the end of my pregnancy. I thought it was just a weird pregnancy symptom and didn't follow up on it for a year. On my 30th birthday May 2009 I went in for a check up, found out the nodule was still there and got another referral for an ultrasound. Had the ultrasound in June and was told I wouldn't hear anything for a few days. That night I got a call from my doctor's office and I asked them if they thought it was cancer. They wouldn't commit to an answer then but referred me to my first endocrinologist who has HORRID!!! he was such a jerk. Had a biopsy and a week later (in early July) I was told it wasn't cancer yet but that they wanted to remove my thyroid anyway. I tried to ignore it for a few weeks, but fortunately I have very smart friends.
My friends helped me find my new endocrinologist and when I walked in for the second opinion I was expecting to be told it wasn't cancer. July 31st 2009 I found out I did in fact have cancer and my current endo was baffled as to why the first doc told me it wasn't cancer (she was looking at HIS test results). She performed a second biopsy to be sure and it was confirmed.
October 6th, 2009 I had a total thyroidectomy and also had 3 lymph nodes removed due to spread of the cancer. In November I had RAI treatment.
I am currently in a limbo state. Had some follow up tests this year and a few of them showed some suspicion of spread to more lymph nodes. My biopsy was negative but I know that my doctor isn't convinced. I know she's worried about a false negative, so I will be having another body scan in a few months.
I try to stay positive because I know that ultimately I will not die from this. I've managed to find a free thyroid support group that is run by a therapist with Grave's disease and she REALLY gets it. I've been doing better emotionally since finding the group. I tell people I got in a fight with a pirate if they ask about my scar. Even though it's only been about 9 months since my surgery, my scar is barely visible anymore. A part of me is slightly disappointed because I view my scar as a badge of honor.
sorry that was so long!
you're just an empty cage girl, if you kill the bird....Tori Amos.
Hello and Nice to Meet You!
I am very grateful to have found this site and team. I have tried to be a helper to anyone who may even suspect that they have thyroid cancer! My goal is to use that experience for the rest of my life to assist others, calm their fears, and to reassure people that thyroid cancer is cancer, but it is survivable - I am living proof! I was diagnosed in November 2005, had surgery in December 2005, with very aggressive RAI in January 2006. Though I'm a survivor of the cancer, surgery, and the RAI, I now know that I have experienced a rare complication of the surgery - I have severe tracheomalacia, due to a surgical mistake that the surgeon made during my procedure. I will be undergoing another major surgery for reconstruction/replacement very soon. It is a dangerous thoracic surgery where the trachea needs to be reconstructed or replaced due to damage. It is so floppy and flaccid, that I am in danger of suffocating or choking to death.
Again, it is my desire to educate others, but I must live through this trial, first.
Thank you for your "ears" - I appreciate you!
The purpose of this thread is to share your individual cancer stories. Old and New members alike are welcome to share :)
A dream is a wish your heart makes, when your fast asleep....