One year ago today, I was diagnosed with papillary thyroid cancer. I have been blessed in so many ways over the past year, but health-wise, it has sucked. Plain and simple. I have been down on my knees, crying out to God for help. And the message I seem to be getting is this: Trust your struggle. If you haven’t struggled, you can’t help people.
I’m writing a book. It’s called 10 Things I Hate About Thyroid Cancer. Sure, there are “Patient Guides” and “What to Expect” books out there. But I am telling my story in real-life, plain-speak.
Here’s the deal: You’re not crazy. Thyroid cancer sucks. But now it’s time to GET EDUCATED and OWN YOUR TREATMENT. Here is a sneak peek at the 10 worst things that get glossed over in all the other books.
10. It’s the best cancer!
When you get thyroid cancer, everyone, and I mean EVERYONE, will tell you that it is the best kind of cancer to get. You will feel dismissed and guilty for even complaining about it. You won’t fit in with the thyroid disease crowd, and you definitely won’t fit in with the chemotherapy crowd. We’re on a tired, fat, lonely and depressed island. We are so lucky!
9. Endocrinologists
Patients with other types of cancer get the best of the best in doctors: oncologists. We ThyCa patients get endocrinologists. The “accountants of medicine.” One of the lowest paid and least empathetic medical specialties. They spend most of their day scolding diabetics to diet and exercise. Any guesses how they treat us?
8. The TSH Prison
After your thyroid is removed, your entire well-being will be reduced to one number = your TSH. You will no longer be allowed to have any thyroidless symptoms unless your TSH – a PITUITARY hormone marker – is elevated. If you do, the symptoms will be blamed on something else, and you will be completely on your own to find relief. You will have to fight like hell to find a doctor who thinks beyond the TSH number, especially as a cancer patient. Put your boxing gloves on!
7. Low Taste Iodine… Diet
Every year, you have to do an AWFUL low-iodine diet for your scan, and if there happens to be a Thyrogen medication shortage, you will have to go off your hormone replacement medication (and become completely incapacitated) for 6 weeks too. What’s a low-iodine diet? Just imagine 98% of the foods you eat. You can’t have any of those. There – that’s the diet.
6. RAI
RAI = Radioactive Iodine Treatments. I (luckily) haven’t had any of these yet, but I had to fight my way out of it. Based on everything I have learned from my ThyCa network of friends, it sucks pretty bad. I can’t imagine anything good coming from being so radioactive that you need a Geiger counter to find out if you are safe to be around other humans. Here’s the crappy thing: it’s shockingly unnecessary for many thyroid cancer patients whose tumors are less than 2 centimeters. Too bad most of our idiot doctors can’t be bothered to know that.
5. Getting fat
You’re probably going to gain weight. When I was diagnosed, I found ONE blogger who said she could not keep weight ON after her thyroidectomy. I clung to that hope, that I would at least get to be THIN after all this anguish. But I became “just another fat thyroid cancer patient.” Prepare yourself. Your metabolism will forever be changed, one way or another. And more often than not, you won’t like it.
4. The “new normal” sucks.
Being thyroidless brings all sorts of unwelcome symptoms. You’re tired all the time. Sometimes you are freezing. Sometimes you get hot flashes and sweat through your clothes. Your menstruation gets screwed up. Your hair falls out. You forget things. You’re clumsier. You’re depressed. You’re anxious. But the worst thing is that you never know how you are going to feel on a day-to-day basis, so there is no “normal.”
3. Most people don’t die from thyroid cancer.
Yes, the fact that most people don’t die from thyroid cancer DOES suck in some respects! That means doctors don’t take you seriously. I’ve even heard doctors say that it’s not “real cancer!” There is no cute thyroid cancer branding like “Save the Ta-Tas.” NFL players are not going to wear little butterflies on their jerseys to increase awareness about your disease. Pharmaceutical companies don’t invest in research for new thyroid cancer treatments. Insurance companies don’t cover medications that improve your quality of life. Sometimes your friends and family are unsympathetic. Half the time, people have to Google “thyroid” because they don’t even know what it is.
2. You’ve never really “beat” thyroid cancer.
No matter what kind of thyroid cancer you have, you are always left with the chronic disease of hypothyroidism. You don’t go through treatment and then move on with the rest of your life. You are forever dependent on pills to keep you alive. Your body never recovers from the day you lose your thyroid. You keep fighting, monitoring your symptoms and changing your medication. You don’t check the “survivor” box. Surviving becomes your lifestyle.
1. If Synthroid doesn’t work for you, GOOD LUCK.
It was patented in the 1960s and it is the “gold standard” of thyroid replacement. Too bad it only replaces 20% of what your real thyroid would give you. Over the last year, I have been to four different doctors, given 18 vials of blood, and spent over $5000 in cash to find a way to get something better. Oh, the stories I can tell! But there ARE options. And it is up to us to find them, and fight for optimal treatment.
My book will do more than complain about how much I hate thyroid cancer. I will tell my story, offer up coping mechanisms, and make you laugh along the way.
What do you think, thyroid cancer survivors? What do you hate about thyroid cancer?
Thyroidless 
thank you for writing this! although i agree with you about hating all that you stated, i have to tell you that when i went for my wbs after rai treatment dose, they saw “increased activity” in my abdomen. that prompted me to get my first colonoscopy at age 51. i figured that since i would have to be put under again i would request an endoscopy as well ,due to the fact that i experience intermitten symptoms of indigestion, etc. thank God i had the added procedure because they found a small (2mm) neuroendocrine tumor in my duodenal area. now i am being tested and monitored for this. God works in mysterious ways.
good luck with your book and God bless you.
Hi Ang! So happy for you that they found the additional tumor! Wouldn’t they have still found it during your whole body scan even without RAI (since they give you a tracer dose of 1131)? I have my body scan in 4 weeks, so I am just curious. Best of health to you!
no, because it wasn’t related to the thyca. the interesting part is that the increased activity was probably the physiological effects of the rai being excreted through the bowel and the tumor wasn’t in that area. the pathologist said the gastro doc had a really good eye because it was so small. it seems the rai pill is introduced to our digestive systems when we swallow it. then it goes to thyroid cells and they are ablated and it all has to go through our digestive area to be excreted. they can tell if it is thyca related. it was just weird how everything transpired. oh, i am still trying to figure out what the original swelling on my neck is because that is how we discovered the thyca and it isn’t related to thyca. i saw a ent specialist yesterday and he is sending me for an mri and will try to biopsy it next week.
Wow! What a story! God does work in mysterious ways!
yes! amen. thank you for acknowledging GOD:)
i can’t get through all this w/o GOD!
Me neither, sister!
Thanks for writing this! It’s hard to explain to someone who hasn’t dealt with this! I have been battling this for almost seven years! I have metastasis in my lungs and take chemo meds everyday along with replacement hormone so I get to enjoy the side affects of both! I have never went longer than 90 days without a ct scan and complete blood workup! It’s hard to explain to people after almost seven years that I am battling terminal cancer! I cherish everyday and thank God for all that I have!
Joel, I am so sorry to hear about your struggles. No one better ever tell you that you have the “best cancer!” You’re in my prayers for strength as you keep fighting.
Thanks Sarah!
LOVE this! I was diagnosed in 2010 with Follicular Thyroid Cancer…after my TT. Long story leading up to this–you know the “you’re tired because you have little ones, eat right, exercise, blah, blah, blah!”. I have a FB group, Thyroid Cancer’s Butterfly Wishes for people to vent away. Vent about everything you have on your top 10. Thank you!!! Thank you!!!
5 yrs out for Papillary thy ca post RAI and TT here- you said it well and said it true gf- even living in Canada with a different health care model its still pretty much the same experience and sucks – it isnt the good cancer it is a the never ending battle cancer – yes it can be treated but it often returns thats what they dont tell us and it can become resistant to RAI – some types it has no effect at all – keep wr
iting 😉 and good luck in your journey
Love this!!! ALL of your TOP TEN…ohhhh how I can relate…I was diagnosed with papillary thy ca in 2004, had TT and RAI….had a relapse 6 months later with mets to my lymph nodes…had those removed with another round of RAI post surg….to only find out that my cancer does not uptake to the treatment…was told I have no options from here on out except surgery if thats a possibility..And they call thy ca GOOD!?!? NOT!!! It is comforting to hear from others and their journeys. Always helpful to know we are not alone. Thanks for your posts, have brought tears and laughs 🙂 Hugs…..
WOW thank u so much for writing this. I am 26 years old have recently been diagnosed since July 9th, 2012 and recently had a total tt August 9th 2012. Im a MESS. I start RAI in december a week before Christmas. Just what I need! 😦 Thank u so much for posting this and I look forward to reading your book.
Thank you for writing this! I was diagnoced with Thyroid Cancer in November of 2009 and had a recurrence in November of 2011. I now have no Thyroid and have had a right side neck disection to remove lymph nodes that were affected. Everything you have written is exactly how I’ve felt. The road to a new normal has not been easy and now I’m simply fighting to stay healthy and to find a new normal. Please continue to write articles like this…they are truly inspirational.
Mimi
Thank you Danielle and Mimi! For me, it has helped immensely just I know I am not crazy and I am not alone. Cheers to getting as close to the REAL normal as possible!
Sarah you are definitely not crazy nor alone in this! The more we learn about this disease the better we can deal with it. Finding a new way to co-exist with this is the new norm for us. I’ve gone through cancer twice in two years and it’s been a difficult road. However, thanks to my faith, my family, my friends, and my doctors I have been able to get through it. You never know how strong you are until you have to be.
Thanks for expressing these things so well! I look forward to reading the book. I agree with the top 10 and all the other things written in comments. The thing I hate most about thyca is living with the uncertainty. I understand that tomorrow is not promised to anyone, but this disease seems to stick it right in one’s face continuously. When things are good, I find myself worried about the next crash instead of enjoying life. I was diagnosed with hyperparathyroidism in Aug. 2011. During an ultrasound for parathyroid nodules the thyroid nodules were discovered. The papillary thryroid w/follicular variant was diagnosed Jan. 2012. TT in Feb., RAI in March. Thank god for thyrogen. I’m due for wbs again in Oct. Still working on finding a thorough doc to follow me. I had a great surgeon and radiaton oncologist. Hits to my career, finances and general quality of life along with the constant struggle to find a happy medium while on levothyroxine make it very challenging to move on. Thanks again!
My fiancee sent this for me to read. I hear her “complain” about all of the issues you read above. I quote complain, because she isn’t really complaining, but the word fits. I guess I could say she is living with the issues you mention. Yeah, I think that works better. I have always felt sympathetic to her struggles, but reading this has given a slightly better perspective of what she is going thru. I am looking forward to your book.
Thanks, Brian! Please tell your fiancee to hang in there! 🙂
Reading this literally brought me to tears right now because of how real it all is and how no one else can really relate to this other than us. I was diagnosed with papillary thyroid cancer 5 years ago at 18, and after 3 surgeries and 2 RAI treatments, I’m going in for another biopsy next weekend. Number 2 got me the most. I’ve been seeing one of the best endocrine surgeons and even he told me that it’ll just be a “pain in the neck, literally.” He laughed it off but those words replay in my mind that this thing just won’t go away.
I am looking forward to this book and glad I came across your site. As much as I try to avoid finding people experiencing the same things I am because it is just too hard to comprehend other people enduring this, it is also comforting to know others understand the struggle.
So glad we connected…you are never alone in this! I pray for my fellow ThyCa survivors every day…will be thinking of you next week for your biopsy!
Thank you for writing this. Every word is so true. Thyroid cancer and total thyroidectomy leave you with a never ending battle. No one that I know understands. Everyone thinks I should be all well. I had my TT Oct 17, 2012 and my RAI January this year. I am not better. I continue to have an increasing amount of symptoms. I am now on my second endocrinologist because the first one told me I had “too much wrong with me for him to help me”. Most days I am so tired I can hardly wake up. I hurt so much for the first several hours that it hurts to move. Getting ready for work it painful. I see my new doctor for lab results in two days. I want to be excited about getting them and hope that she has a great plan that helps me to feel better, lose weight, not hurt and all the things we all wish for but I don’t hold a lot of hope. It was nice to hear that I am not the only one.
Thank you for writing this. I had a TT, over 200 lymph nodes in my head and chest, Jugular vein, accessory nerve, and sterno…muscle removed in 2010. I was left with a scar stretching from ear to ear and a never ending battle with feeling “normal.” I can’t even remember how many times my Synthroid dose has been changed in the last three years. I am now up to 300mcg a day and it still isn’t working right. It helps immensely to know that I am not alone. 🙂
I am soooo happy to know I’m not the only one who feels this way! Thank you for taking the time to post this.
I just got results from a biopsy on a thyroid nodule today – “consistent with carcinoma”. I don’t even know what type of thyroid cancer. I have a consultation with a surgeon on Dec. 30th. Assuming I will have a TT shortly after. I’ve been hypothyroid for 11 years now, so I understand the struggles that brings. You are so right about Endocrinologists. I fired my last one this spring after 2 years of dismissing my symptoms and refusing to up my meds because my TSH was “normal.” I hate that I’m going to have to try to find a new one. I’m following your blog now.
I am sorry to hear…I wish you all the best. And I hope you find a wonderful surgeon who is experienced in thyroid surgery…it made all the difference for me!
Thank you! I have an appt. with a surgeon who specializes in neck surgeries and is known for thyroidectomies. He’s actually an ENT but apparently he has quite a few thyroid patients.
Yea im a thyroid patient. I got diagnosed with thyroid papillary cancer at 13 . Got two surgies done back to back because the doctors didnt know the lump on my neck was cancer! Then got treated with radiation and was stuck in the hospital with 86% of iodine – 131. Then got a relapse two years ago , the age of 16. Had another radiation therapy and fortunately im in remission right now. But taking the synthroid medication doesnt help much. I still feel really tired and lazy. Because of all of this I have lost many of my “friends” and have been diagnosed with phemonia and now I am also anemic. The struggle is really hard and isnt easy like doctors assume it is. I have been trying to look for others who have struggles like me. And your book seems to cover what my adolesnce was like and still is. 🙂
I am so sorry to hear that! Your teen years should be far more carefree!
Well said! I am a 5 time survivor of PTC which has now turned to differentiated after going to Cancer Treatment Centers of America as a study. Please email me. I would like to talk to you about your story, blog and book. I have been writing a lot, have one hell of a story and have been sharing the “trust your struggle” motto for a long time…it’s my creed. There is strength from pain and my/our journey is not for nothing. Maybe it’s to be a voice to help others. All I know is I believe there’s a reason for everything, including waking up to night sweats at 4am and coming across your blog. Consider night sweats #11 and patient empowerment and advocacy as #1 on my list of the 10 Things Every Patient Needs to Know to Empower Themselves. I’ve predicted all 4 of my recurrences and pissed off more doctors than I can list in the process. The bottom line: embrace your disease, get familiar with it, know your body better and trust your intuition, and find a team of doctors who will listen to you no matter how many years it takes. I was diagnosed at 18. I’m almost 34. I’ve had 5 neck dissections and I’m resistant to the standard protocol, radioactive iodine. We are all survivors. We are not bipolar or crazy. We don’t have a thyroid. #2 on my list dedicated to every ignorant doctor who lacks bedside manner: When you don’t have a thyroid, maybe, just maybe you’ll understand. Until then, I’m in charge. It’s my body. My life. My rules. You will listen to me. And yes, life is a beautiful struggle. Trust it.
My daughter , Jamie , is a thyroid cancer survivor who has battled through 4 recurrences since she was 18 years old & is now 33. Everything you have written, Jamie has been trying to educate others about for years!
As a Mom and a caregiver as well this cancer definitely needs more awareness & education
God Bless you & all those who are fighting!
Keep up the good work. !!
Love all of this!!! Was diagnosed September 2012, have had three surgeries and one round of RAI…and doctors are discussing a fourth surgery now! This is definitely not a “good” cancer! Nonetheless, feeling blessed because I’ve dealt with all of this while in grad school- and did not let it change my life plans! Getting married in a year and going to flaunt my scars- 24, young, and stronger than I ever thought I could be!!
We’re all strong!
Thanks for writing this. Had cancer at 18 and still at 28 I’m having issues with everything. Just so frustrating at times that all I can do is cry bc no one else understands.
I found this website when I searched thyroid on Instagram. 2 weeks ago I was told that my biopsy came back “suggestive but not diagnostic of papillary thyroid carcinoma” and I need to have half of my thyroid removed and possibly all of it if the tests come back positive. I am searching for everything so that I may know my options because I already had to fight tooth and nail with my Endo to listen to me that something wasn’t right even though my TSH were normal. She was convinced the 2 small cysts/nodules were nothing but apparently they are. I am terrified of what I will go through after the surgery. It is hard enough feeling the massive and crippling anxiety and depression I feel when my thyroid acts up. I am glad that I found a site where I can see what other people in my situation have gone through. I never thought I would be 28 and hear the word “cancer” but I am ready for the fight. I should hear from the surgeon in the next 2 days.
Thanks for all!!
I am almost at my 5 year cancer free mark. I was diagnosed with papillary thyroid cancer in September of 2009. I had my thyroid and a few lymph nodes removed and went through the RAI treatment. I will say that I have never felt better. I have not gained any weight whatsoever and have had 2 healthy babies since that time. I am an avid distance runner (run daily) and eat extremely healthy. I am not saying this to brag or make anyone feel badly. Each person is different! I hear so many horror stories from other thyroid cancer survivors and I just want to give some people looking at these blogs some form of hope! Cancer changed my entire life–for the better. Best of luck to all those battling. XOXO
Thank you for a light at the end of this thyca dark tunnel
I had hoped my last response would have taken but perhaps not. BUT, I was reading this while in the waiting period for test results. I’ve always battled weight and to after research I began to feel hopeless about this ‘forever and uncontrollable’ obese life and so reading this and seeing that if I FIGHT I may be able to get ahead of this weight thing… I felt hopeful. THANKS.
I was diagnosed with Papillary thyroid cancer in May of this year. Had a TT and a low dose of RAI. The hardest thing for me has been getting the endo to change my dosage and prescribe T3. I really had to push for it but have been feeling perky so I am hopeful. Good luck to all that are going thru this.
My current struggle is the thyroid hormone replacement medication, Synthroid and not being able to depend on it for consistency. I feel as though it works best when I do nothing, as in sitting around and running a few errands. If I do a bit more, like go away for a few days, go on a job interview, am more active with my life, then I am depleted of energy. When this happens all I can do is sleep on the couch and feel like no amount of sleep helps me. I get between 6 – 7 hours sleep. That is all, no matter what I do throughout the day.
Yes, I take the meds with a full glass of water, on empty stomach, wait an hour to consume anything, do not take calcium. I monitor my levels every 3 months. My endo does not want to change anything. She thinks we found my “sweet spot”, but it is so sour. The past few blood work results are that my T4 is 1.6-1.7 and my T3 is 3.0. The TSH is stable at 0.40, Tg is < 0.1. TgAb < 1. My PCP issued the T3 at my request b/c my endo would not do so. Based on others' experiences with this, my levels are not optimal. I most likely need to lower the FT4/Synthroid and raise the FT3 with a bit of Cytomel.
The endo did not want to check the FT3. She thinks it will cause heart palps and higher blood pressure as I have labile HBP and had heart palps when dose was higher. There is not many endos local to me that deal with this properly.
I appreciate hearing your experiences.
Angel, so many of us have had the same experience! I often feel I am going into battle when I have an endo appointment. Hang in there…at least you have a sympathetic PCP!
Omg! This is the best top 10 list I’ve ever read!!!! I read your stories and can relate 100%. SO TRUE! I too had thyroid cancer. My surgery was just 8 months ago. I’m struggling everyday. It’s nice to hear someone tell the same story.
Bj…. I just wonder if anybody else had has the same sx’s as I’ve been having?? It feels like a fullness, smothering,swelling in my throat. I did recently have an ultrasound and of course it was normal, therefore “everything else is normal”.
Hi BJ…Thanks for reading! I am sorry you identify so much with the list of frustrations. Unfortunately, most of us do! I have not experienced a full feeling in my throat since my surgery. (At least I have been spared one symptom!) Perhaps others on this thread could weigh in?
Where can I purchases your book? I would love to read it
I will post it here once it’s published! It’s still in a Word document! 😉
I somewhat see this making sense. But I have a great endocrinologist. I guess it gets old to hear people whine so much about it. I have it, haven’t had it the easiest but I will survive. Griping about every little thing isn’t going to change anything. I hear this same stuff over and over again. You got cancer, it sucks, but move on. If your doctor stinks then get a new one. If people call it the good cancer, so what, we know it’s not good. I think some people just look for sympathy and are irritated they don’t get it. I’m saying this not because I have it easy because trust me I have not, but whining and getting others to whine too is not helping anyone.
Thanks for the feedback, Kim. If you read the rest of my blog, you will note that this is the only post that encourages others to share their frustrations. It is, incidentally, my most read and shared post. I can only assume that many thyroid cancer patients relate to these “gripes” that I wrote about during a particularly frustrating time in my journey. I wrote this post for them. I firmly believe that connecting with others who shared my experiences kept me sane while I was in the depths of the battle. Frankly, to say I was fishing for sympathy is laughable. My closest friends, family and co-workers had no idea how I was feeling during these times, because I found solace in other patients who truly “got it.” I disagree that sharing experiences “doesn’t help.” If that were true, support groups wouldn’t exist.
Wow…I can only say I cried after reading every word you wrote. I’ve never felt so alone & distant from the world after this cancer became part of my life. I don’t even know if I remember the person I was 2 1/2 years ago. I am forever changed and carry that burden everyday.God bless you and guide you to find the answers we are all needing to here.
Michelle – God bless you and I sincerely hope you find your way back to “normal” someday soon. I am 3 years out now, and have finally adjusted. But I certainly can relate to feeling distant and alone…Just know that you are NOT alone. So many of us have been there or are there right now. I pray for strength for thyroid cancer warriors every day!
I had to share this thank you as you summed it up and took the words out of my mouth. My husband thinks ” surgery is over and the thyroid is out you are ok stop complaining you don’t have cancer anymore” I am tired of people not knowing how I feel everyday and the ups and downs the sweats and the sleepless nights and moodswings etc… And DAMN IT SCREW every doctor who tells me this is the best cancer you can have. Let me be there god forbid your wife or children or parents get this ugly thing called CANCER.
#2 and #1 are THE BEST! Speaking as a fellow “survivor”.
I can’t believe how amazingly CORRECT YOU ARE! I could say so much more but I just need to say thank you for this article I couldn’t stop crying reading this because it is so relatable I’m 27 with a four & a 5 year old who have to ask me why are you ALWAYS SICK mommy its not fare!? Although I give them my positive BS Response I want to scream ask the same question!
My family and family doctor said that my mood swings and fatigue are because I’m depressed and that it has nothing to do with losing ,y thyroid or lack of thyroid hormone or lack of at3. They want to put me on anti depressants, like covering the sum with one finger!
Try to see a holitic doctor and find out what your free t3 and free t4 levels are. Your symptoms can most definitely be related!
thank U for this. It’s like someone has read my mind
#follicularthyroidcancer
This article explains all my symptoms spot on!!! And I’m frustrated because I feel like a cry baby all the time……complaining of this or that. Just when I start to feel close to “normal” again, something starts to hurt or I have a depressing day…..sometimes for no reason at all. I was diagnosed this past April and had a complete Thyroidectomy 1 month later. I’m 30 years old. I just recently underwent the RAI treatment in October and that was not fun!!!!
I was hopeful after talking with my endocrinologist that if I continue to take my Synthroid regularly I should be okay with regular check-ups…..that I shouldn’t have anything to worry about cancer wise…..maybe I’m just naive!
After reading so many comments, I felt depressed and sad after reading that many of you had relapses or a different type of cancer. The doctor makes it seem like nothing! This is heart-crushing!!!
I was so happy to have read this article. I was diagnosed with PTC the end of November, a week later I had a neck ultrasound which resulted in many lymph nodes looking ‘strange’. They decided to biopsy one that is located directly behind my jugular vein. After sizing up the location for about 15 minutes they figured out how to get at it. My doctor called and said the sample was so small that the results were unclear. I went back to him to have a 3rd biopsy but he decided otherwise saying that he will look at it once I’m in surgery. My surgery is scheduled for January 29th. My mind is so unsettled, and its hard to know the words to say. I’ve heard too many people say that its the better cancer to have and I cringe hearing it. I’m afraid that post-surgery, I’m going to be so different. I’m a 32 year old wife and mother of 2… And I’m scared. I don’t know any of you but say a prayer for me. I have faith that God will strengthen me and my family. Thanks for your posting.
I am sorry to hear Tabitha! Have faith…I was a 33 year-old mother of 2 when I was diagnosed, and now I am a happy, healthy mother of 3, just 3.5 years later. I will pray for you, and my best advice is to look at Year One as a journey back to normal. It will be a bit of a roller coaster, but there is light at the end of the tunnel. And connect with other survivors who “get it” and don’t make stupid, unhelpful comments! There are lots of great ThyCa groups on Facebook. Best to you!
Thanks Sarah! I guess I haven’t been told that it’s going to take close to a year for things to get back to normal. I know that I don’t feel ‘normal’ now, and I want to stop feeling like I am. I’m looking forward to being ‘normal’ again, and stop with these random emotional breakdowns. Thanks again for replying.
Wow! I’m so amazed of how negative this post is. I’m 27 years old and been diagnosed with thyroid cancer few weeks after my wedding! Have done the thyroidectomy, and was isolated for nearly 20 days for my RAI. But this has changed my life in a good way, I didn’t put any weight on as I exercise daily and eat healthy. I take all the negativity out of my mind and just think positive and thankful for things I have. Trust me, your mind does amazing things people! I know it might be frustrating at times but stop thinking negative and look at all the beautiful things around you that you are thankful for! Like the other lady I’m not bragging about my life and my situation but I want you all to take all the negativity out of your mind and work towards a wonderful future 💟💟💟💟 God bless you all
Glad to hear you are doing well! This blog was written in my darkest moment post thyroid cancer, and is my most liked and shared post. I believe this is because it acknowledges thyroidless life can be just plain difficult, regardless of your attitude, eating or exercise habits. For the record, I felt great for my first 3 months, and then the wheels fell off for about a year. I exercised 6 days a week, burning a minimum of 700 calories per workout, and ate 1400 calories a day and the scale refused to budge. I could gain up to 10 pounds in one week and then not lose it. My doctor was happy to give me an antidepressant, but wouldn’t try adjusting my medication with T3. Once I stabilized, my metabolism became more normal and I went on to write “happier” blog posts. But the one thing I never wanted this particular post to be was another voice telling people like me it’s all in our heads and we just need to be positive. You’ve been lucky thus far. Be grateful for that. But believe me when I tell you that your good experience has very little to do with positive thinking, diet or exercise. I do sincerely hope your good health and good fortune continues!
I can relate to EVERYTHING! I’m 3 years post TT for papillary….glad I’m not the only one who feels all these things. Thanks for your post!
This is the best thing I have read since being diagnosed with thyroid cancer. I can relieve to every single word you said. I wish more people would read this to know what we go through.
I am so happy to actually read from a first hand thyroid cancer hanging in everyday to see what our body has in store for us!! Notice I didn’t say survivor also!!! Everyday is a battle to see if you can remember what you even got out of bed for! I am constantly arguing with my Dr. about my levels and meds I really should be on! I am so ecstatic that you are writing this book and it nots based on some “expert’s” opinion on how we should feel! Thank you from my heart! I seriously thought about letting my teenagers write a book on how great our life was before mom got thyroid cancer! We use to be so active and just have so many adventures before “The best cancer I could have got” happened! I actually had a nurse tell me last week I got the easy cancer well after I gave her the go straight to hell look, I just smiled and said tell my bank account that and my tired achy bitchy fat butt that!! Thanks again for being there for us “lucky” ones..I will be buying your book!! “Stuck in a rutt” North Carolina!
Thanks for the post. My concerns over my health are continually dismissed by my endocrinologist. I gained 15lbs two weeks after I started the hormone replacement and haven’t been able to lose it. I was told that’s part of getting older. Also, being male is a rarity. I had one doctor tell me I was his only male patient, like I wasn’t welcomed there.
I wish you the best. Actually, as I read the 10 items you listed, as you proceed with this disease, it is my opinion that at least three of these assumptions will change. How do I know? My husband & I have taken this journey. Our book will be released early next year. It will follow the pathway through a papillary-follicular diagnosis and tell the story from our experience. I look forward to reading your book.
Good article. I was diagnosed at 24 (10 years ago) with Papillary Thyroid Cancer and had a recurrence in my lymph nodes 5 years ago. This week my wife was diagnosed with Follicular Thyroid Cancer after having a nodule removed last week. Next week she goes back in to take out the rest and begin the rest of the process. This cancer is garbage.
Thank you for our article. I recently found a lump on neck near collar bone, had ultrasound and told it was normal. My husband felt another lump under arm pit and my gland were swollen, Did CTscan, showed a cyst on thyroid and enlarged lymphnodes (1.3cm, 1.1 cm and several smaller ones.) I was referred to ENT told me I was feeling my collar bone, flew threw CT scan (comment his finger was tires from hitting the forward button and he really didn’t need to see anymore of it.) He said his advice was I should get a hobby and stop feeling my neck. I went to another ENT, he spent time with me, scheduled a FNA guided by ultrasound. Mentioned some calcification on nodule, and also told me all this did show up on original ultrasound(he had a copy of it). Of course FNA was unsuccessful in getting a usable sample. Radiologist said it was all calcified and that he could not get threw it. He mentioned monitoring every 6 months. I have follow up with ENT 4/15. Of course I hope its not cancer, but my gut is telling me it is and to push the issue. This is hard as I am not a very assertive person, I keep hearing “Your fine” from family, friends, and co-workers. My 21 year old daughter meant well when she informed me her therapist she talks to said if it is thyroidd cancer its okay because its the “good kind of cancer”
I’m sorry to hear that, Debbie! My experience was similar…was told I was feeling my larynx. Trust your gut and ignore those who dismiss thyroid cancer as “easy” or “good.” They are well-meaning, but detrimental to the cause of awareness and a cure. I wish you good luck and good health!
Thank you so much for writing this! It really helps to know that there are other people who understand how hard dealing with thyroid cancer is. I get so sick of people telling me that thyroid cancer is “no big deal” because it is a big deal. My cancer was found when I was pregnant. I didn’t have to deal with all of the crap right away because my doctor didn’t want to do anything until after I had my baby. So it all just got put on the back burner. But hands down the worst part of having thyroid cancer for me is that I’ve had to spend time away from my son. I was away from him for almost a week when I had surgery in December and now I’ve been away from him for almost 2 weeks because of the RAI. The radiologists at the hospital told me I needed to keep my distance from him for 40 days! Needless to say it’s been traumatic for both of us. He’s only 6 months old. So when people tell me that thyroid cancer is no big deal I tell them to get their neck sliced open and spend 40+ days away from their infant and then they can talk.
You people are wallowing in self-pity. My thyca was found when my son was 6 months old. I, too, had to stay away. But, he had the time of his life! He got to be cared for by doting grandparents & I had a chance to recuperate knowing he was in great, capable, loving hands. I also had three other children, a husband, full time job and was a full time student. It all got put on hold, but geez people, it’s such a short hold! Nobody suffered, there’s no long term mental sequelae cause Mom was sick & out of commission for a while. You guys need to read some books on being strong minded & positive. And don’t give me the “mine was worse than yours” stuff. Everyone has their own inner pain & path to travel with thyca or any cancer. Grow up!
Well Kim, your comment doesn’t seem very positive or strong, and it’s certainly not empathetic. Everyone’s long-term disease management is different post-thyca, and I would never presume to tell someone to “grow up” about it. In fact, I am working hard on my book to provide survival tips to navigate the difficulties that many of us share. Since you do not have any difficulties, the book is not for you.
I’m almost two years past my thyroidectomy and RAI and this sucks. I’ve gained weight and can’t seem to stop. I tell myself I’m happy to be cancer free and for the chance to see my nieces grow up. But I can’t help but wonder what this has done for my chance to have my own family. As silly as it sounds, this was comforting. Thank you for your openness and honesty 🙂
#7 is wrong. You only do the LID before your treatment for thyca. Not “once every year.” It’s hopefully once EVER if they get the treatment dosage right. As someone who has gone through this, it’s frustrating to read a blog that’s supposed to comfort me and the facts are wrong.
I’m sorry if I misrepresented. In my experience, I had to do the diet every year for my scans. Perhaps that is because I never had RAI.
HI @Madison . Just because you have done it once doesn’t mean it’s the same for others. People do LID before RAI and before any thyroid scan. In my case, I’ve done LID three times, and I had surgery on a July 2013, so do the math. It’s also frustrating that people that has gone through the same underestimate others suffering or struggling. Every person is different, and I’m sure than the side effects and my fight due to thyroid cancer are very different from yours, and that doesn’t mean your symptoms are less valid than mine. Finally, I think that whatever we write is to comfort ourselves, not others, if whatever Sarah has written comforts some people that is great, but if it doesn’t work for you, then just read something else instead of saying facts are wrong when they are not!
This is exactly Spot On!!! Just had my thyroid completely removed in May 2015. I feel great so far except the fact that I work out hard core 6 days a week and eat right and can’t lose a lb. They’ve had to change my dosage once so far. I have to go back again next week. Soooo frustrated though because I’m trying to lose 30 lbs!! We need to all come together and somehow find a cure for this weight gain problem!!!
Reblogged this on Lost In Isolation's Blog and commented:
PLEASE read all of this. This was said much more eloquently than I could have ever said.
Yes, all this is so true. The doctors all say that I just need to diet to lose the 80 pounds I’ve put on since my thyroid was removed. That’s all garbage. Nothing works, plus I have zero energy. I feel like a stuffed pig, belly fat I never, ever had. Nobody understands because you are right…they don’t even know what a thyroid does they just think I’m eating junk. I was in great shape before the cancer. My body has never felt the same ever since. Even messes up my body’s elimination cycle and I’m short of breath a lot. I’m constantly tired, depressed, etc. Working out?? I don’t have the energy to do that and my feet feel swollen and my joints all hurt, but the docs say there is no reason. Yep, that’s what the “books” say. It sucks too because I used to be a gym rat. I’ve just had bilateral carpal tunnel release surgery for numb hands, and that may be because of hypothyroid too apparently. Thanks for writing this and it feels good to tell someone who understands about this. I haven’t found a single person for support.
ALL TRUTH!!! I’m 2 years post-op and waiting for Round 3 of RAI. My labs show increasing thyroid cells but the scan cannot locate where they are growing…so I wait??? My family “forgot” I’m living with this cancer. Sad to say this, but I’m glad I’m not alone on this thyroid rollercoaster! This is my new ‘normal’
what scan can’t locate the thyca, ira? do you mean a CT scan? what is your Tg? did they suggest a PET scan?
With Labs you mean Tg? Do you have antibodies too?
My Tg came back positive for the second time, but antibodies are decreasing. I don’t know if this means that cancer has recurred… Waiting for doctor’s appointment…
So glad to read this. I’m the wife of a thyroid ca survivor. It’s been almost 4 years since his rai and total thyroidectomy and its been a total roller coaster. I can tell him if his tsh or t3 is off by his irritability and physical complaints. He will be ok (still not the old guy I married) but functional. Then one week I can’t even recognize him. He is so short, depressed, irritable and either “on” or “off” energy wise. It effects the whole family. He will deny its a problem and think I’m just picking on him and low and behold…..he goes to the lab and I’m correct. So grateful his cancer is gone…,didn’t know it would be such a long term problem though. To top it off I have multiple sclerosis:/ we are quite the pair trying to live up to our former athletic, spunky, overachiever selves. Our kids may never know who we were.
Wow! I’m so sorry you feel so negative about your experiences. Please think twice before you share your story in a book. It may cause people who could survive to think twice about having a thyroidectomy. I had thyroid cancer 10 years ago when the no iodine diet book didn’t exist. What wonderful food choices are available now! I made it through the trials with no mental scars even though one of my vocal cords became paralyzed. I have a full quality, highly enjoyable life plus I now have an excuse for bad singing! So take heart thyca’s! It looks pretty scary & negative for a little while, but it’s all worth it!!!!
Bloody brilliant..thanku. .please lets chat.
I am a mom whose daughter was diagnosed with metastatic papillary thyroid cancer. She went to bed fine on December 23rd and woke up with a lump on December 24th. Twelve lymph nodes with cancer and thyroidectomy. I have cried fountains as I am worried about what they will find when they do the body scan in March. I do not understand why thorough thyroid checks are not done on women and young women. My daughter had absolutely no symptoms and her thyroid showed Hashimotos too.
hi cathy, i’m sure it must be awful for a mom to see her child suffer and go through such a frightening experience. thyroid cancer is on the rise in children and adults. i have communicated with many parents whose children, as young as 8 and 9, had thyroid cancer. in 2012 and 2103 i had stage 3 papillary thyroid cancer. I am a mom to 3 guys.
here is some important info that you should find helpful: there is a great, active, supportive email group that is for all kinds of thyroid cancer and a special group for young adults. you can access it at http://www.Inspire.com. also, www. ThyCa.org contains a wealth of accurate information for patients and caregivers/family.
i suggest you and your daughter always ask for copies of reports of blood work so that it can be monitored by you and her, also, copies of pathology report, U/S report, surgical report, RAI WBS results. keep everything in a binder with clear plastic protectors.
in addition to monitoring the Tg (thyroglobulin protein that is now the cancer marker), make sure her endo. issues Free T4 and Free T3 blood work as these are the hormones that should be monitored for feeling as balanced and healthy as possible. otherwise, they just base it on TSH which is a pituitary hormone.
endos want to keep the TSH low (between 0.10 – 0.19) so that it (coming from the pituitary)suppresses thyroid cells from forming again. the pit. does not know that there is no thyroid gland; it will work off the replacement meds dose. after a few years, and no major issues, they will let the TSH go up to 0.50.
the goal is to get the Tg to undetectable at less than 0.1. this might be difficult to assess in hashimoto’s patients because their TgAb is usually elevated when it should be normally less than 10. decimal placement is important here – Tg < 0.1 and TgAb < 10. if she has elevated TgAb then a mass-spec blood test (quest labs uses it) can be performed.
i hope to see you on inspire. my user name is beingcelestial. you and she will get through this!
I received my diagnoses of Hashimoto’s and papillary thyroid cancer today. I had a partial lobectomy one week ago and will find out next week if necessary to have the remaining lobe removed as well. I was hoping to find something positive to pull me out of this funk I’ve been in since receiving this devastating news. Obviously your book will not be it (Bummer)! Are all thyroid patients this depressing (I say this with a giggle) ? I just want a little bit if positive is there really nothing?
Hi Lori. I am sorry to hear about your diagnosis. Check out some of my other posts, especially the more recent ones. This post was meant to highlight misconceptions about the disease. No one prepared me for any of the possible side effects and my doctors dismissed me when they happened so I thought I was alone and crazy. I much prefer to prepare for reality. No is surprised by the nausea they feel during chemotherapy because we talk about it openly. Depressing posts aside, I am still here, 4.5 years later. I’ve found good survival mechanisms and am doing very well. I wish the best for you!
hi lori. losing the thyroid gland does have a physiological effect on people. no human thyroid hormone. can’t live without a replacement. synthetics just don’t cut it. yes, it is a highly treatable, often curable, cancer but it does change you.
if you need RAI make sure you get Thyrogen instead of temporarily being off the replacement meds as that can make you just about non-functional for a week or two.
obtain copies of all results and reports-pathology, surgical, scans. blood work will be life-long and knowing the BW results and where your non-human thyroid hormone levels should be is a vital component to the state of your health and metabolism.
I suggest you register in the http://www.Inspire.com thyroid cancer group. very informed members there. also check out http://www.ThyCa.org.
feel freem to PM me. you will get through this.
hi lori. losing the thyroid gland does have a physiological effect on people. no human thyroid hormone. can’t live without a replacement. synthetics just don’t cut it. yes, it is a highly treatable, often curable, cancer but it does change you.
if you need RAI make sure you get Thyrogen instead of temporarily being off the replacement meds as that can make you just about non-functional for a week or two.
obtain copies of all results and reports-pathology, surgical, scans. blood work will be life-long and knowing the BW results and where your non-human thyroid hormone levels should be is a vital component to the state of your health and metabolism.
I suggest you register in the http://www.Inspire.com thyroid cancer group. very informed members there. also check out http://www.ThyCa.org.
feel free to PM me. you will get through this.
I just wanted to emphasize to people that the fact you can make jokes of the pain tells me that you do have a very positive attitude about this. Just because you acknowledgethe bad doesn’t mean you are negative. This cancer sucks and we will never be the same. However, that doesn’t mean good can’t come of it. We need to embrace the bad and find a way to be joyful. But if we can’t vent to each other when we’re down, who can we vent to? Yep, tired and fat island for one please!
I’m a year in, going through my 2nd scan and my first experience with thyrogen. My face is numb and my head hurts, but so far easier than being without meds. Trying to avoid a stroke and looking forward to 3 days of quarantine. Seriously, 3 days of quiet is just what the Dr ordered! There is always a silver lining. Thank you for sharing the load!
Thank you for the story. I was diagnosed in 2006. With thyroid cancer of the bones. Imagine me having to explain that to everyone. It gets tiring after awhile. I have been on oral Chem pills for five years now. This last one turned my hair completely white. What I hate most is when people treated me like I’m 85 and I am deaf. I can hear you just fine.
Although I agree to almost every point you have mentioned, I have to disagree with you on the endocrinologist aspect. I think if you’re that disappointed with your endocrinologist that you should look for a new one. My endocrinologist has been great. He has been there since the lump was discovered in 2012 and continues to be there for my regular check ups today
You’re very lucky! I am on endo #3. The search continues! I wish my primary or my OBGYN could manage my medication for me, but I have to have an endo until I am 10 years out.
I had my Thyroid Cancer removed in 2012. I haven’t had a check up after my second round of radioactive iodine treatment. I live under a very remote area, I have to travel 200 miles to see an endo. So my small town Dr regulates my med. Unfortunately he is as bad as the horror stories. He explains everything away! Now after 3 yrs of working out(2hrs 3 times a week), strict diet. I am gaining weight fast and feel hopeless. Was a size 12 now on the verge of 16. I’m going to see a new Endocrinologist I was needing to know right questions to ask. Can you help?
I’ll be honest…making friends with Endos is not exactly my specialty. But I would advise you to know your numbers. What is your TSH, FT4 and FT3? Do you know where your numbers were prior to surgery? Or when you last felt well? Ask the Endo:
– Can we test all 3 (TSH, Free T4 and Free T3) so we can get a full picture of what is going on?
– Do I have any other vitamin deficiencies that may be contributing to this weight gain (iron, vitamin D)?
– Are you willing to add supplemental T3 to help normalize my metabolism?
Overall, keep things quantitative and focused on numbers. Show your diet and exercise diary. State facts but do not stray into emotion. In my experience, as soon as you start talking about how frustrated or unhappy you are , the Endo tunes you out and labels you a crazy patient. Stay calm and reinforce that your goal is to partner with the Endo in the journey back to normal, and that diet and exercise are already a part of your life.
Good luck!! Keep me posted!!
The most real article I’ve ever read and is sl true word by word
Please include a chapter on thr horrors for those who lost their parathyroid glands as an “accident” during their surgery for thyca! Hypoparathyroidism is a nightmare!
Thought I was writing this as its me down to a t ! Great I’m still here but at what cost ? There are days I really need to drag myself out of bed and that’s to go to work ,which I do full time ! And the others well let’s just say I could do with s home help lol I would love to do the things I used too but just don’t have the energy . I live in Northern Ireland and the only medication they give thyroid patients is levothyroxen so I no nothing if the ndt you talk about however I would love to get my hands on your book . As if I could help myself I certainly would xx
I am six months post diagnosis, and also wanted to write a book! Can’t wait to read yours! The power of prayer is awesome. I don’t yet know His purpose and plan for me through all of this, but I trust God daily! And daily, life is now a struggle!! (I work full time, travel for work, and am a momma two two little girls… Can we just say, TIRED ALL THE TIME!!).
Oh my word I love ur piece coz I was diagnosed with the same thing 3 years ago now have no thyroid- tons of meds for the rest of life and everything I Jst read sums up perfectly how I feel all the time- no one gets it- there r days I wake up so tired i struggle to even move my arms let alone my legs- no one understands this unless they r us I guess reali sux…. Sumtimes I Jst wana crawl into bed and stay there…
My cousin had hers removed and starts radiation next week. If I could only get her resources on why it isn’t necessary. I hate seeing her go thru more suffering.
http://www.medscape.com/viewarticle/839947
So thankful there is a community out there for us. It really helps to hear others experiences, although it does scare me a bit. I recently had 2 surgeries , the first was a partial then path came back showing I had Hurtles Cell Thyroid Cancer (which doesn’t show up in scans) so they immediately sent me for 2nd surgery to remove the rest. I start my LID and RAIT in a few weeks and I’m so nervous.
Right now I’m on a short acting thyroid medicine. The symptoms you mentioned, clumsiness and forgetfulness are so me right now. I also feel like my emotions and energy levels are a roller coaster. I was hopeful though bc my Endo has told me once they get me on my permanent thyroid medication I will feel like a “new” person. I’m really really hoping this is true. But after reading this I’m so scared. Ugh! I appreciate everyone sharing and especially this post. Thank you.
I hate that most times everyone thinks it’s only females that get thyroid cancer. Yes we males only account for like 13% but we are here and feel the same (minus the menstrual cycle).
I hate that the doctors stop at tsh levels…i had my neck dissection in 1999 and was thin up until the last year and a half…i ask doc what I can do to get weight back down….i get told change my diet…i eat healthy now…
Love this so much .. I am not the one going through this hell its my husband the sweetest happiest man .. it’s all changed in two months he was diagnosed with papillary and follicular cancer with 35 positive lymph nodes .. Wtf they took his thyroid but it seems like they took his life and our wonderful life I could cry or scream or both .. he is exhausted has anxiety and it’s extreme depression and being a man lol he has lost 30lbs which I think I have gained .. we are just beginning this journey and I am already ready to choke out a doctor and he has the best care we are in Boston Mass General .. love to talk by the way my name is Michelle and I am not happy with the way thyroid cancer patients are treated and I want to change it ..
hi michelle, you will receive a lot of important info in the thyroid cancer community on http://www.inspire.com. there is so much to discuss regarding diagnosis, tests, blood work, replacement meds. they cover it all.
I have questions & no answers can you please help me maybe get more insight?
It sucks! Do not feel any good since mine has been operated and radio iodine treatment twice due to mmmetastaes….
6 years ago I was diagnosed with papilliar thyroid cancer. They removed the complete thyroid and 9 infected lymph nods and after that I had RAI twice…..I agree with this article, feel like you discribe…..TIRED all the time, unconcentrated, stupid, forgetting…. and I think it gets worse… Till now I let the doctors decide but after the last control I am willing to work on my medication, reading a lot about T3 level ((which always is in the norm, but just above the minimum). Whats the name of your book and can I order it in Europe?
Hi Christel! I am sorry you feel as tired as I do. I am not yet finished with my book. It is a lot harder to write with three little kids and a full-time job than I anticipated. I will post updates here. Thank you!
Yes! Yes! Yes! I’m so sick of hearing “it’s the best cancer you can get” I’m sorry, but I would rather not have cancer thanks. I was blessed to be referred to an amazing ear nose & throat surgeon who actually did my complete thyroidectomy. He’s been amazing, but now it’s time for me to see an endocrinologist & I’m dreading it. Thanks for sharing this!
I’m a rare case 35 yr male have stage 4 ptc 5.5cm cancer growth and lots of small cancers spread in to my neck had a tt and radio I found cancer my self After along time for feeling unwell and being told I’m fine by doctors it all started in may 2016 I came up in an unexplained rash all over my body that drove me crazy made my face swell up and my breathing really bad went into a&e to be told they don’t know what’s was wrong with me rash went on for months was told once I found I had cancer that it was nothing to do with my cancer only to be later told it was im a plasterer and now can’t go near glues or plasterer etc with out getting breathless and rash swollen face and hands and other body part balloon out had patch test on my back nxt day was in a&e breathless and burning itch all over my back that kep me up all night ment to take 5 days , Im also on beater blocker as my heart has been going crazy since they put my thyroxine dose up to try lower my ths levels to help stop cell growth my body hurts all the time pains everywhere get cold and hot having breathing problems I’m breathless just walking up the street have two inhalers have terrible trouble sleeping neck pains chest pains and terrible pain behind my eyes is a I feel drained and faint mind goses blank forget things constantly can’t seem to think straight during the day and my muscles hurt from lifting anything i was fit and healthy now my life’s in ruins can’t go back to my old job with my skin rashes and bleathlness waiting on more scan in June have been having couniling as have other stress with my ex and worry about my son .. so thyroid cancer my experience says not an easy cancer , uses less doctors have messed up my treatment delayed it buy months not been helpful and fobbed me off every time I’ve seen them
Well my mom had aniplastic thyroid cancer and they said she would live 30 days and she lived exactly 30 days ,the cancer attacked all major organs , but her mind was sharp and accepting , her memory is a blessing
I am very sorry to hear that, Lloyd. I really should have specified that these complaints are specific to papillary thyroid cancer.
You have really described it pretty much to a T! Although I have an AWESOME endocrinology Dr. She works so hard trying to help me find ways to feel more like “The Old Me”. I truly pray someday they do find some kind of relief for our symptoms. Tired of being Tired all the time. Best wishes on the book I will be watching for it!
How about the brain fog? When you try to talk the simplest of words just no longer come to you. We are so so lucky to have had the “good cancer”, says no intellient person who has ever lived a day in our “new normal” life. It has been 7 years for me and the “good cancer” comment makes me even angrier now than it did 7 years ago. I did endured the whole RAI, and the weight gain thing, you would think after the RAI permanently burnt the tip of my tongue would of helped that but Nope it didn’t. I cannot help but feel not as lucky as what the uninformed seem to think we are.
Thank you so much for writing about our struggles. I had my thyroid taken out in 2015 and I am still okay or so they say… scared, depressed and anxious most of the time… much heavier to the point that I don’t even recognize myself… and angry because everybody expects me to be so very happy. I understand perfectly and I can definitely relate to this post.
I hate never knowing how I’m going to plan anything based on how my energy level, brain captivity, and ability to function will be from hour to hour, day to day would be a miracle.
Recently diagnosed and white in grateful that the cancer is curable in my situation, I’m also reeling from the fact that I’ll never be the same again. I’m a fitness instructor, yoga teacher and trainer and right now feel like I couldn’t possibly pick up where I left off. #10 on your list! Everyone has said that to me. I’ve said it to myself! But I hate it. It feels like I shouldn’t really be worried or scared or concerned that I have TC because it’s so curable. And the gaining weight! I’m in the weight management business… This one’s going to be hard. I’m only half way through my journey. I had a partial last month and then cancer was found, so going back for second surgery then RAI. My kids. My pets. My hubby. All impacted. But I should be grateful, right? One thing I’m grateful for is that I found your article. Thank you for validating the things that suck about this.
Thanks for all the information. I’m sick and tired of being sick and tired, literally. My body feels beaten up everyday. My spirit is nearly broken. Not a pit party, just my story. May God bless you & yours.
reading all of you guys message i am frightened to do TT. is there anyone who didnt go through TT. if yes pls let me know how things are going on. i have been diagnosed with papillary carcinoma 3 months back. I was admitted to hospital to do TT but i said no i dont want to do TT and came out of hospital. now i am seeking for alternatives. if there is any pls do message me. thank you
i am scared and i am scared very much. please help
I am sorry to have scared you, Suraj. I wrote this post several years ago. I am now almost 7 years post-TT and doing quite well. I think the key is preparing for a life change. Your metabolism does change, and adjusting to medication takes time and patience. Depending on the size of your tumor you may be able to take the watch-and-wait approach. Perhaps you can get a second opinion. Best wishes to you.
thank you Sarah
I am looking for peoples who didn’t go through TT. is there anyone in your link?
Hi surja, I was diagnosed with papillary thyroid cancer in 2015 had surgery but decided not to go through radiation. My doctor has just been monitoring my thyroglobulin levels and making sure they don’t go up. I still feel pretty crappy majority of the time though. As in fatigue, hair loss, weight issues etc but I don’t plan on doing radiation.
Changed my life completely… I have received iodine radiation twice and … I look myself on a mirror and I think I see another person.
Oh my goodness… as I read this I am sitting at my doctors surgery waiting to be seen, it’s been 8 years since I’ve had my complete thyroidectamy and left neck dissection for papillary thyroid cancer and it still sucks. I’m still suffering the long term effects of have this procedure done as well as RAI treatements.
I’d love to read your book.
This post couldn’t have come at a better time and couldn’t be more true.
Hello everyone I was recently diagnosed in February with thyroid Papillary carcinoma stage 1. I had a total thyroidectomy on April 6 since I was placed on Synathroid 125 mg.I been feeling good besides the headedaches (I noticed they come shortly after taking my meds)and shortness of breath at times.My neck feels very tight when I swallow and my scare has began to heal.I have my appointment May 3 with my Endocrinologist.I have compiled a list of questions to ask him.I read all of your list of problems and feel the same sway.Im also cry a lot and feel sad and depressed at times.Thanks for sharing.
You are soo right about each point..i was diagonised with papillary carcinoma two years ago..now i am 17..although i am alright it still makes me angry when people say that it is the best cancer and that i am very lucky….i am happy that that there are people like you who can understand this feeling….may god bless you🙂
Hello Sarah,
Thanks for sharing all of your experiences. I was diagnosed with thyroid cancer and had my thyroid completely removed a year ago. I was dealing with major panic attacks and anxiety. They put me on sertraline and then prozac. I started feeling great as I also workout a lot. After feeling so great, I decided to stop taking the medication as I dont ant to depend on it to be my own person, but 2 weeks ago I had a major panic attack, and my anxiety is back.
If you’ve coped with this and learned how to do it the natural way, could you please recommend me or point me in the right direction as to what I should follow? My anxiety is literally not letting me live a normal life. I just stopped taking Prozac and are now taking TRANQUILENE, which is completely natural and promotes calmness and relaxation.
Will I need to be on Prozac for the rest of my life? What can I do to control these panic attacks and live normal?
thanks,
Jess