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New to thyroid cancer.. freaked out

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I'm 25 years old and few days ago I got diagnosed with thyroid cancer (papillary carcinoma). The doctor say that I have nothing to worry about. but I'm freaked out. I will see a surgeon in 3 weeks to talk about my surgery. I'm not sure how all this works... I'm scared. Am I gonna be ok??? On top of everything today I went to my doctor because he wanted to check my moles. He told me that one of them he needs to cut off and send it to lab. I was so scared, if the mole was fine he would not even bother with sending in to the lab. Now I have to wait for the results for almost 2 weeks, I can't stop crying. Any advice??

usljh10
Posts: 85
Joined: Apr 2009

It's ok to cry when you here you have Cancer. It's not the end , your life will not be the same anymore tho.You'll have to have blood test surgery's Low iodine diet Ratio active iodine whole body scans and take a pill every day but you'll be ok. My cancer was found in March of 2008.It's hard to adjust to the ideal of having had cancer. You will need to find a good Endocrine to help you alone your way. The main thing I think is to educate yourself as much as possible. ask questions. Be as positive as one can be. Good luck on your new journey.

Lisa

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Thank you lisa
Yes, this is so new to me that I can't wrap my mind around this. I did not know who I can talk to, I have great mom, friends and awesome boyfriend but they all say you will be ok.. I'm tired of hearing that especially when they have no idea what I'm going thru. So is nice to speak to people who understand me. I do have a great doctor and I'm glad for that but still... I'm lost. I just started new semester in school but already I can't focus at all, I'm not sure if is even worth it to stay in school right now. Thank you for your kind words.

usljh10
Posts: 85
Joined: Apr 2009

There is another site thyca.org it was very helpful to me. You can get some answers there. It also has a Low Iodine cookbook. It will give you steps to take before you take you RAI pill. It's pretty scary when you take this pill that is ratio active. Read all you can about it. The better informed you are the better you will feel.
I didn't have any problems other than a sort throat and some swelling after I took the rai pill. Good luck!
Lisa

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Thank you Lisa

AlexMother
Posts: 6
Joined: Sep 2009

I don't have the desease but my son who is now 22 does and I have been there every step of way with him. I can't say I know how he feels or what he thinks all the time but we talk alot about his feelings and it has helped him. We too heard "you/he will be ok" but I have to say it is never easy to hear when you are in the middle of such an unimaginable time. Who at such a young age as you and my son think cancer is going to become your life. I will tell you confide in your family about your feelings just ask them to listen not to react to what you say. They will take it and process it and have a better understanding where your mind and feelings are. It is not easy as a parent to watch your child go through such a horrific time. All I wanted to do was fix my son, put a bandaid give him a kiss and tell him it will be ok like when he was little. But, this time it hit like knife in the heart and I took my anger and researched everything so I could educate him and our family so we could be there and support him everyday. There are times I won't lie that I wonder if he could do more to be positive or if he is just going into a hole but I step back and realize that is also part of this terrible situation. Through all my research I am amazed how much our thyroid effects every aspect of your body. Listen to your body take one step at a time and ask for help from friends, family, or professional. My son's therapist has shown him some great meditation steps when he has bad moments. He has helped him with his negativity. And helpped him realize that God doesn't hate him. All what goes through your mind is normal but don't shut out the people who love you. My prayers are with you in finding comfort and peace and to a recovery like nothing else. Take care

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Thank you so much for your kind words, it made me feel better. I wish you and your family the best!!!
Take care

YolieC09
Posts: 5
Joined: Jan 2010

Just had my thyroid removed on January 14th has I was diagnosed with papillary carcinoma. I am doing okay. Surgery went fine. I had to stay two days only because I am on blood thinners and they had to make sure I had no bleeders before I started back on my blood thinner medication. Did not have much pain afterwards. The only thing is the annoying throat hoarsness which could last for up to three months. They did not have to remove any lymphnodes so I am hoping they got all of the cancer. I know I was freaked out when I got the call from my doctor. They say this is a pretty easy cancer to cure. I don't care...I have Cancer that invaded my body. I go next week to see the surgeon. Get the pathology results and take a thyroid blood test. Because now I have to take thyroid replacement pills. Seem to being doing well on them...but I can become very emotional at a drop of a hat. All I can say is take a deep breath and take one day at a time.

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

@YolieC09
I'm glad your surgery went good, but how long did you recover? when do you think I will be able to go back to school and work?
I'm not sure how I'm going to get used to the pills because my body seems to not take pills well at all. This is such a hard time for me right now, I'm waiting for my surgery and on top of everything I'm waiting for my skin biopsy results... I'm not sure what I'm going to do if the results come back positive, how can I recover from thyroid cancer and skin cancer. I'm so scared and sad.
Thank you for your response.

YolieC09
Posts: 5
Joined: Jan 2010

Dear Blair84
I could have gone back to work about 10 days after surgery. The doctor told me I could start driving once I could move my head side to side. But I took about 2 1/2 weeks off of work because I had the sick time. I also work part time at WalMart and going back to work with them tomorrow. I know what you are saying about skin cancer..I also have a mole but I have not really brought it to the doctor's attention. Also scared because the way things are going...afraid of what he may say. Next time I see him...I will show him. Can't hide my head in the sand on this.

I will include you in my prayers tonight..Remember you are not alone in this.

lynn2318
Posts: 41
Joined: Jan 2010

Hi Blair84,
I know what you are feeling. I was diagnosed April 2008. I had a my thyroid totally removed by a general surgeon who called me 3 days later to tell me I had papillary carcinoma of the thyroid with 2 positive lymph nodes. My best advise is to get on line and educate yourself. I think you are already doing that but just don't wait for your doctors to because they probably won't give you all the information you need. I wish I had been more pro-active in educating myself sooner. I know you are scared because they have told you that you have cancer. It doesn't matter what kind of cancer you have it is the most scarey words you can ever hear. The surgery is not that bad. I didn't have much pain and the scar is minimal. The waiting game is the worst. I will be thinking about you and praying for you and your treatment. If you have any questions I would be happy to help as much as I can. Stay positive, you will be okay eventually.

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Thank you for your response. How long after you've been diagnosed you had the surgery? because I got diagnosed last wednesday and I have apt with the surgeon on Feb 17 and I think this is so late, I want to get this over with. So hard for me right now.

lynn2318
Posts: 41
Joined: Jan 2010

Hi Blair, I am more than happy to share my story. I will try to keep it short. It was a God thing mine was found. A ultrasound tech was testing a new piece of equipment on me. She was scanning my carotid arteries. She scanned my left carotid then across my neck to scan my right and she stopped because she found the nodule. I then saw my internist who ordered an official ultrasound which confirmed the nodule. He then ordered a I131 uptake and scan which showed it was a "cold" nodule which are usually cancer. I then went to a endocrinologist who did a fine needle aspiration biopsy and was told I was ok, however the biopsy report was inconclusive. She told me we could wait 6 months and try again to get a better specimen to biopsy. I was not happy with that so went to see a surgeon. He told me there was no reason to repeat the biopsy (which was extremely painful). He stated the result is the same, the thyroid had to be removed. I saw him on a Monday and had surgery on a Thurs. My surgeon said there was no immediate danger to wait but let's just get it done. My surgery was not bad, not much pain. He called me on Monday and told me I had papillary carcinoma with lymph node involvement. I then was scheduled to see a different endocrinologist who ordered radioactive iodine treatment which I had in late June. I had another treatment in January 2009. Since then I have had a PET scan, I131 uptake whole body scan, ultrasound of my neck and I'm scheduled for thyrogen scan in Feb. I feel good right now but hold my breath every time I go in for any tests. I know you are concerned about waiting to see the surgeon and I will lift you up in prayer for peace of mind. Be sure to make a list of questions for the surgeon and it is a good idea to take someone with you who can just listen or take notes because you will not hear everything. Trust me on that. I am a medical assistant and have worked in the medical field for 26 years and I heard very little after the word cancer came out of his mouth. I wish you the best and if I answer any more questions I would be happy to. Thanks for listening to my not so short story.

emma54
Posts: 59
Joined: Aug 2009

Hi

My story is exactly the same as Lynn's, except no lymph node cancer. But I, too, was having an ultrasound on my carotid artery through Life Line Screening just to see if I was OK as far as being a candidate for heart attack or stroke. It was just on a whim that I went that morning.

I know you are feeling sad and scared, but honestly you will be fine.

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Thank you emma54, it's nice to hear kind words. I hope I will be ok

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Hi, how is the radioactive iodine treatment??? What are the side effects? The doctor told me I will have to take pills for the rest of my life.. how is that? Side effects??

emma54
Posts: 59
Joined: Aug 2009

There are no side effects from the pills you will take the rest of your life because the pills replace the thyroid hormones which your thyroid produces for you now. They may take a bit of tweeking though. By that I mean your doctor may need to adjust the dosage so that your levels are correct.

As for the radioactive treatment, you may feel very tired prior to the actual treatment which is merely a pill you take. When you are in isolation, you may feel tired and your salivary glands may hurt a little. Suck on hard candies to avoid long term damage to your salivary glands. I just felt a little "yucky", but got through it fine.

If you read some more of the entries on this site, some are really helpful.

Hope you are feeling better about all this.

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Thank you Emma54

lynn2318
Posts: 41
Joined: Jan 2010

Hi Blair,
The iodine treatments aren't so bad it is going off the thyroid medicine so you can take the treatment that sucks! You have to be hypothyroid (very low levels of thyroid) for the iodine treatment to be successful. You will be very tired, more tired than you have ever been. The actual treatment is just swallowing a pill. Then you are isolated for 4-5 days. I thought I could read, clean my closet etc. I didn't feel like doing anything except watch movies and sleep. As suggested by another blogger you need to suck on sour candy. The iodine can settle in your salivary glands and that makes them feel tight and spasm. Just have sour things on hand and you will be fine. After your treatment you will have to take thyroid medicine but that is nothing. You will do great. When are you scheduled?

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Im going to see my surgeon on Feb 17, so I'm not sure yet when I will have my surgery. Where were you isolated? because I live in a small apartment with my boyfriend with only one bathroom so I guess I won't be able to stay in my house. I just want to be done with all this..

lynn2318
Posts: 41
Joined: Jan 2010

Hi again Blair, I stayed in my bedroom after my treatment. I have a bathroom in there so I could be isolated in my room. That will be difficult for you to share your apartment with your boyfriend since you can't use the same bathroom facilities. You will want to be somewhere familiar and comfortable. You can easily clean your entire apartment when your isolation is over. I used Clorox wipes and just wiped down everything in my room and bathroom. I know you want this over. I can totally relate to that feeling. I am almost 2 years postop and I still have anxiety sometimes. I had to tell a insurance guy about my cancer today and I got a lump in my throat and started to cry. Hang in there, the waiting is so hard.

AlexMother
Posts: 6
Joined: Sep 2009

Keep asking all the questions no matter what they are it is never a stupid question when it comes to seeking information about your cancer. My son's ENT office told my friend I needed to stop asking so many questions and get off the internet... NO matter what keep researching as I did. My son's treatment should have went a different way the first go around and we found out too late. Please be sure to see an Endocrinologist after surgery he will be the one to order your RAI and this is important... Research shows that if you have had a CT scan with contrast it is vital to the uptake to wait 3mo. after that date to get the optimal benefit. This was not done in my son's case it was given at 7wks and his cancer that was left in his lymph nodes continued to grown and rapidly. His last surgery in Nov 09 (different ENT surgeon) found a clean margin just past the base of his skull we were really blessed that it did not travel further. RAI didn't really make my son sick just a little nausea his does was 161mci I will also say it is important to suck on the lemon drops or anything sour to keep your salivary glands working. My son didn't do it often enough ?? on how much that is they recommend every 2 hrs. He now has extreame pain in his salivary glands on one side when he begins to eat or drink (first few bits) this is due to the blockage that formed you can read more about that on the Thyca.org lots of information there. All and all it is tolerable but follow the guides do all you can to keep positive and focus on what you What to do in life :) Take time for yourself and your boyfriend take a trip take a moment to laugh you deserve it. Take care and let us know how you are after surgery. My thoughts are with you know that you will be able to continue your life you will have speed bumps and road blocks but you sound to be the type of girl that won't take it :) keep that up! It is impossible for anyone to imagine how you feel or what you are going through. I have watched my son and listen to all these same questions and frustrations. It is good to be a fighter... God bless and take care.

Perstephanie
Posts: 28
Joined: Feb 2010

I haven't been to a single appointment since my diagnosis without crying. I'm 28, terrified, do not want the surgery, understand that I need it, but I'm on Synthroid now and I'm not doing well on it, so I know there are sort of kind of other medication options if you are really determined, but the idea of feeling as lousy as I do WITH a thyroid on Synthroid for the rest of my life has me completely hopeless... without a thyroid? No clue what's going to happen. A lot of people think Synthroid is great and do really well on it; I'm just freaked because I already know I'm not one of those people.

BellsAngel69
Posts: 102
Joined: Dec 2009

If you are on synthroid already, it's probably because you were diagnosed with hypothryroidism? Just my best guess. Now you've been diagnosed with thyroid cancer. After your thyroid is removed, your body will have a fresh start by taking the synthroid. I am positive it will work better for you because you won't have your diseased thyroid counteracting the effect of the synthroid. Like others have said, it will take some tweaking to get the right dosage. I gained weight, was tired, moody. My endocinologist keep telling me my levels were fine, but I listened to my body and was adamant my level wasn't right. After about six months and adjusting it three times, I finally started to feel like my old healthy self. Hang in there. I know it's scary, but you'll get through it. Stay positive and be strong!! This is a great community here. We're here for you, whatever you need!

Perstephanie
Posts: 28
Joined: Feb 2010

My thyroid is not counteracting the Synthroid. My thyroid was working - I have never ever had an abnormal test. I have Hashimoto's, but that doesn't mean my thyroid is diseased - it means my immune system is screwing up. Not my thyroid. Some people never do well on Synthroid. I felt 100% better on nothing than I do on Synthroid. If my "diseased" thyroid were "counteracting" the Synthroid, then I would have felt worse before. I know the science behind this. Trust me. Synthroid is not going to work for me. Some people cannot convert T4 into T3 well. Your thyroid produces T4 and T3. Synthroid is only T4. Some people do great on it. Some of us don't. I'm not going to stick with a doctor who insists on basing it on levels because I know when my TSH is at 2.5 I have major major symptoms, but I'm not going to believe that I'll feel fine on Synthroid if I just remove the only part of me that was producing hormones that didn't make me feel like hell all the time and stay on the pills that are making me feel that way. If Synthroid is my only option, and it isn't, then it is absolutely not worth this.

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I understand how you feel, to be honest I can't cry anymore. I've cried so much... I'm scared too I don't know how my life is going to look like without having my thyroid. I also don't do well when it comes to medications...All you can do is pray and think positive. It can only be worst..you will get through this :)

Perstephanie
Posts: 28
Joined: Feb 2010

I freak out and cry every night. I'm on plenty of medications but it's my doctor trying to counteract the depression that's thyroid based so they just aren't working. I don't like knowing that without these medications I could die. I know someone who had a lobectomy and is fine and her thyroid's still producing its own hormones for now. I know that's not my situation but Hashimoto's doesn't mean there's a problem with my thyroid; it means there's a problem with my immune system. It's an autoimmune disorder. There is no reason in the world to think Synthroid will be any different after my thyroid is removed. Synthroid is how Hashimoto's is treated normally to begin with and it works for some people and it doesn't work for others. I'm just sick of people telling me the drugs that are making me feel horrible now will suddenly make me feel great after I have no other options because there's no logic behind that and it's not like I can turn around and put my thyroid back in. I have talked to doctors. I know there are other medications. Unfortunately they aren't available in the US right now. It doesn't make me feel any better to know that false positives on FNAs occur because of Hashimoto's, either.

Anna82
Posts: 4
Joined: Feb 2010

Perstephanie,

Hashimoto's is an immune disorder but it is also a thyroid disorder. It is also called chronic lymphocytic thyroiditis. Basically it is a condition where your immune system attacks your thyroid. However, is is also known to attack T4, which would explain why synthroid is not working for you. Your body converts T4 (inactive form) to T3 (active) for use. We use cytomel on our patients, which is a T3 suppliment, and have good success with this. In addition, having your thyroid taken out will not make synthroid any better if your antibodies are attacking T4. This is a link with more information about it. I hope this helps. Have they done a test for antibodies to T4?

http://www.mayoclinic.com/health/hashimotos-disease/DS00567

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Just a update. Went to dermatologist and my results came back negative. There is no sign of cancer in my mole and around on the skin, Now I can focus on papillary carcinoma, and keep positive attitude. God is good!!!

usljh10
Posts: 85
Joined: Apr 2009

Love to hear Good New's!!!!

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Yes, thank you. God bless you

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Ok so for the past few days I've been feeling little pain in my neck. I don't know why!!!! Like the thyroid cancer is bothering me, is this normal????

usljh10
Posts: 85
Joined: Apr 2009

It may be the nodules causing pressure, and it may mental. :) Your mind can play amazing tricks on you now that you know. I have a lot of scare tissue from my surgerys and my throat get tight and pulls, my mind is telling me something could be going on. I go to my endo March 22 for my 6 month ck. Our cancer is slow growing so I guess that's a plus. I hate to say that. because any kind of cancer is bad... :)even if it is slow.
Good picture,
Lisa

changoslf
Posts: 4
Joined: Jan 2010

Hey my name is JOHN and im 26 with Medullary thyroid cancer..i had been diagnosed in 2008 had a radical neck disection because it had spread and recently went through radiation therapy..in response to your question..my neck felt the same way like i had a sore lymph node or something..thats what made me go to the doctor in the first place..i think it can be a combination of both mental and physical..although i did not know i had cancer until the biopsy..so..well lmk on my inbox if i can be of more help thanks JOHN

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Yea I freak out a lot so it might be mental more then anything...
Thanx for the response

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I went to the doctor yesterday and I'm having my surgery Feb 25 which is next week. I was lucky because there was one cancelation, my surgeon is awesome but I'm little confused he said that at first he will remove only one side to see if the cancer is there and then if he finds cancer then he will remove the whole thyroid and lymph nodes... Hmmm so there is a chance that I might not have it at all!!! All this is crazy!! Can't wait for the surgery, he said I can even go home the same day if they take out only half of it... I'm praying for good results...

CJMom
Posts: 9
Joined: Feb 2010

I was basically where you are a month ago. I had a suspicious nodule but FNA was negative 8 months ago. After another ultrasound and 2nd FNA recommendation, I went in for a partial (right side) thyroidectomy. I'm 30 years old and had this weird sense of doom since this all started. I just had a feeling it needed to come out. Papillary carcinoma was found during my surgery. My ENT surgeon went ahead and performed a TT at that point. He told me exactly the same thing you were told. The surgery lasted approx. 4 hours. He did not mention anything about lymph nodes, although the final path report said it didn't spread. I sure hope it's right because I've read that's common. Good luck to you! I hope everything goes well and you have a quick recovery.

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

@CJMom
Thank you, yes I'm hoping for fast recovery!!! I'm very positive

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I had the surgery yesterday and I fell ok, better then I thought. The doctor removed the left side but told me that he didn't find any cancer in it, but to make sure we will send my thyroid to lab and I should have the results in 2 weeks. If its gonna come back positive then he will remove the right side if negative then he will leave it like that...it's all confusing because I thought I had cancer....idk well now Im hoping for negative results...God is good

envoy646
Posts: 8
Joined: Feb 2010

WOW that is good.. I hope to have the same results. I was diagnosed with papillary as
well and I am scared out of my mind. I go to the doctors on March 3rd to see
the Endo. I have a enlarged nodule 2.1cm. I am praying daily the mental toture is
the worst because its just scary... I wish you well blair84 and GOD bless

Tess1964
Posts: 1
Joined: Jan 2011

Glad everything went well with you! I was diagnosed on Jan. 3 with papillary. I'm having my surgery this Friday. I'm having a total thyroidectomy. I am really worried about the recovery. I have a small 1.2 cm nodule on my right side and 3 other really small ones on my left. The doctor is extremely optimistic. I'm trying to be cautiously optimistic. I had a sono & they said there was no lymph node involvement. I'm sure nothing is written in stone until the final pathology report. I love when they tell you "Well if you're going to get cancer this is the one to get" Yea, for the record I RATHER NOT HAVE IT AT ALL!!!!
Peace

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