Multinodule, with the largest right in the middle. All blood labs normal, except antibodies...diagnosed Hashimotos 2 months ago. After suspicious FNA results, I was told 75/25 chance of cancer (75 being no cancer). Noted hurthel cells and possible follicular neoplasm.Recommended I have a TT.
Surgery went well! I had a TT on Friday and I was told after surgery, two lymph nodes were very swollen...so those were removed too. Parathyroids remain and are functioning well. I am waiting a few more days to find out if this is cancer or not. Surgeon said it's a 50/50 chance.
I'm being told my Hashimotos will remain since small amounts of thyroid tissue was left to preserve the parathyroids. I can say, even five days post-op I feel better than I have in years! I was put on 175 dose of Lev and it seems to be ok for now.
I am getting bruising that I can see is from the surgery, but why does it show up 4-5 days after?
How do you get the swelling in your neck to go down?
Is there a delay in feeling the difference between sickly thyroid/normal labs and no thryoid/medicated?
What is the cancer treatment like?
Has anyone been told it spread and if so, what's your story?
I am sorry you are having such trouble...I have had the surgery twice, a lobectomy on the right, then another when they found cancer. I did not have any bruising. You might call your doctor to make sure there is no bleeding. The thyroid is very vascular. I also did not have any swelling. Unfortunately, you will start to feel worse in a few weeks. If they do find cancer, you will probably have to have RAI, and you can't have any thyroid hormone until after that, so you will get more and more hypo. It will not be fun, my THS got up to 186, I could barely function, my face was very puffy, I snored horribly, was lethargic, slept a lot, had brain fog...it wasn't fun. After the RAI they will put you on synthroid, that is a good day, you will feel the synthroid right away. I had this complete body rush, kind of like a hit of adrenaline, about 30 minutes after I took it. Then you will feel steadily better as you take the synthroid. I had RAI in late July, and I am only now really feeling back to my ol' self. I hope you have no spread...I did not. Good luck!
I searched RAI info on this site and found some answers. Hopefully it is not cancer, but if it is I've been there--Papillary carcinoma T2 (goiter removed). Had RAI on 9/11 and just got an all clear of no cancer on 9/24. Just need monitoring and medication adjustments. MANmom is right about the no meds no fun part. Feel free to look at my journals/posts about it all. Take care.
Hello all! 10 days post surgery and I feel amazing! Better than I have in almost 10 years! I have found out that undiagnosed Hashimoto's will make you feel pretty bad. Thanks for the advice! My surgeon said it looked very nice (I've been using ice packs like crazy!)
Today I got the news that I had a 1 inch Papillary Thyroid Carcinoma in the thyroid that was removed via TT, and in a few weeks I will have radioactive iodine treatment to complete my cancer treatment. He said my cancer was stage 1 and would not require any chemotherapy. He also added he removed six lymph nodes (more than what was stated at the hospital) there was no cancer found in those 6 nodes. I will have to go off my Lev 175 and take Cytroml? 25 x2 a day, to become hypothyroid and then nothing two weeks before the RAI treatment.
I'm nervous about the RAI treatment and being around my husband (who is a cancer survivor) and my two children. Any words of wisdom?
Wow - your cancer diagnosis came like mine - after the surgery was over. I'm so glad that you got it out!!!!!!!
Okay, here's a great link for information on the radioactive iodine (diet and precautions): http://www.thyca.org/rai.htm Make sure that you talk to your hospital's nuclear medicine department ahead of time too - mine had restrictions that weren't on the ThyCa list (like no bananas).
The big thing is when you are radioactive you can emit enough radiation to damage someone else's thyroid and that radiation is excreted from your body through your bodily fluids (sweat, urine, feces, tears, etc.). Flush twice, don't share a bed (I covered my mattress in plastic and threw away my sheets), wash your clothing and towels twice - alone, use plastic and disposable utensils and plates . . . basically consider yourself to be a carrier of a very contagious cold or flu. No hugging, kissing, sex, etc. for at least a week.
My sister actually got a cheep hotel room for a week to stay away from her husband and pets. I just locked myself in my room and kept my pets out. We both rode home from the hospital in the back seat of the car(s) as far away from the drivers as possible. Some states require hospitalization for the RAI treatment but that's pretty rare anymore.
You will need to drink ***LOTS*** of water after the radiation to flush it out of your bowels and liver as quickly as possible and suck on sour candy to get it out of your salivary glands.
Others will have great advice too.
Oh, and prepare to feel like cr@p for a while (sorry). They will push your TSH level high (usually above 35) to make sure any remaining thyroid tissue/cancer is good and hungry for that radiation. You'll be really hypo and will feel pretty rough for a few weeks after the RAI until your TSH comes back down to human levels. Short term pain for long-term benefits (hey, I have a friend going through weekly chemo - this beats that!!!)
Welcome to the ThyCa survivors - the few, the proud, the glow in the dark. :-)
papillary carcinoma '03, 2nd surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma (one with three recurrences/RAI)
another sister and daughter with precancer
I am so happy to have found this board with your posts today! I meet with the surgeon in the morning to discuss my TT and set a date for it. I just found out November 6th, after an U/S and FNA that I have Hashimoto's. I have been on Synthroid .150 for years. I cannot imagine having to be off it for several weeks. I do have questions about this, if anyone can help me out.
--- How puffy did your face get?
--- Did you try to disguise your scar when in public?
--- How long after surgery did you stay home before going back to work?
--- How long before you could drive?
I work in a very busy vision center and have been asked by my boss how long I think I may be out, what the recovery time is. So far I have not been able to answer that question. I keep reading that I will be tired/lethargic and have "brain fog" which does not sound conducive at all to my job. I have to be able to dispense contact lenses, measure visual acuity, etc. and it's been a struggle lately. I had no idea that my memory lapses and general malasia has been due to the Hashimoto's. I am soooo ready to feel better and move on!
THANK YOU!!! I am so afraid of making my family sick. I love your advice and knowing you have been through it helps a lot. HA-HA!! I had to call my husband in to see this...Utah writes, "Welcome to the ThyCa survivors - the few, the proud, the glow in the dark. :-)" LMAO Glad to be a member! XOXO
No worries, after the surgery they put me right on meds for the first time ever. OMG what a difference!
--- How puffy did your face get?
I was more puffy with my Hashi thyroid than I am now :D
--- Did you try to disguise your scar when in public?
I like to put a light bandage over it, just to keep sneezes and such off of it. It's not too bad, just be prepared with what makes you comfortable until it heals enough to where you don't care :), turtle neck, scarf, bandage etc.... If you have a good surgeon he will do what mine did which is to place his incision into a crease in your neck. I still have swelling too. I like the tiny bandage so no one "stares" for too long. :)
--- How long after surgery did you stay home before going back to work?
I work from home, so I was able to work for a few hours, nap, then work a few more. I would say for a demanding job like yours 10 days should do it. For me the first five days were a lot of cat naps, so I would guess a min. of a week off. By the 10th day I was ready to go shopping. Ask your surgeon he will tell you what restrictions you will have. I was told for the first 10 days to lift nothing heavier than a gallon of milk.
--- How long before you could drive?
I was told 3-5 days, and when I was "off the vicodin". I was lucky to have a stocked house and a family to help me lots so I didn't drive at all.
The surgery is not too bad, I was eating solids the next day. Felt kind of like I had a sore throat and my tonsils out. I had pain in my shoulder that hurt more than where they took out my thyroid. I asked the surgeon, but he denies using me in some twisted game of Simon Says with his surgery team, while I was knocked out. I also asked if they played spin the patient... which when he answered me...he was laughing so hard, I had a difficult time believing his answer of no.
One day at a time, each day feeling better than the last, more hopeful than the last and when you feel out of control, post here for help, pray & put it at the Lords feet and try to nap.
Reading these posts are so informational and quickly answering any questions I Have.
I was just diagnosed with Papillary Carcinoma yesterday. They did a biopsy on a nodule they found in my ishtmus. The endocrinologist said she would send me to a surgeon for a TT. I have been freaking out about the surgery. More so about the surgery than the actual diagnosis I think. I had a feeling that my results were going to come back positive only because I have been losing my voice every day and had constant hoarseness. My Endo said that my nodule wasn't quite big enough to cause that...unless of course, it was cancer. :/ I know I am going to have to do RAI treatments.... Since I work in a hospital would I have to be off wiork during all the treatments? How long do they usually last ?
I'm so glad you are doing better! this forum is so inspiring
Since I work in a hospital would I have to be off work during all the treatments? How long do they usually last ?
I went in on Feb 10th. I got released on Feb 12th with restrictions.
No contact morfe than 1 hour and 3.52 feet once a day with anyone for 2 days after release..
For 7 days no movie theaters, close contact, no sharing a bed, no washing my clothes (tie them in a bag was separate after 7 days of letting them "rest"), no sharing food ware, no touching preggos, no being near children. period. flush potty 2 times always etc...
Now setting expectations is what a good doctor should do, mine did not. LOVED my surgeon so I went with his referral for the RAI. Bad bad bad. I'm very well, cranky at them so my funny bone is well, not in tune right now :P
Plan to be off work love for a min. of 1 week.
I had clear margins, which means no spread of my 2cm tumor on my isthmus. I was told I don't have to have RAi but it was strongly suggested I do it.
I was dosed with 100 McI. I was told by the head nurse 30 min before taking the pill, no one will come in your room, no one will assist you, no vitals will be monitored or taken.
Basically if you chose a hospital stay, you choose isolation and lock down for min 1-2 days.
Now I would push for them to offer you THYROGEN!!! I was told naw, no, why bother, the old way is the best way. Ugh.........I feel like dog doo doo because of going severe hypothyroid. EVERYONE who had thyrogen did not get the awful hypo state like I am in now. The pill was easy to take, a lot scary and not once with all the fear, and being super hypo did i get queasy. Nothing. BUT the hypo part omg, yuck!!!! awful, horrid ...worst part of the entire 6 months so far LOL
In a few days I will do a write up, it will include some contrasting in doctors opinions vs hospital actions concerning RAI at home vs. RAI in the hospital and staff involved.
Need for my brain to have more of Lexy first, less hypo, so I can think clearly, open my eyes all the way and allow time for my funny bone to heal.
I, too, had 100 mlc's of RAI. I had Papillary cancer, 5 tumors, the largest tumor was 1.5 cm. The worst part was the extreme hypo. My TSH was up to 186 when I was dosed. I was a walking zombie. The next day I took my levothryoxine and felt this huge rush...I started on .150 and have since been bumped up to .1875. I am now on the right dose and feel like my old self. I felt better the day I could take the meds, which was the day after RAI. My hubby and kids took off to Oregon, we had already planned our vacation, however, that week was the only week my doc could dose me. Worked out pretty good. I did get very puffy, was very clumsy, brain foggy...it was awful. I just stayed home and had a stack of "chick flicks" to watch. I have three boys, so I never get to watch chick movies. It was kind of a vacation for me! There is a great website that has lots of info...www.thyca.org. That is a thyroid cancer website. Check it out, and good luck. there is lots of support here...
I'm 5 days out and also have swelling and bruising. The bruising didn't show up til the 2nd day out or so. I am also waiting for my pathology report...hopefully today. I do know that my thyroid extended into my chest area so perhaps that has something to do with the bruising there.
Thanks MANmom :) I finally got my lexy when they released me and I got a hold of my prescription from home! Yeah a nice rush, but I am still super swollen, my eyes and face are beyond puffy, I don't look like me. My legs I cannot wear socks, it's just bad all around. Hypo this bad shouldn't be allowed with no spread of the cancer. This was "just in case it grows back". Today is day seven after having my RAI. Each day I feel batter, more me again. It's hard waiting for my TSH to decline more than waiting for the RAI to be down enough to be deemed "safe" for interaction with the general public.
The bruising on my chest was from the spreader used to open my neck as much as possible so that they could really get a good look at what was going on inside my neck. (Find an intern who was there in your surgery LOL they let the craziest things slip...but don't ask if you are not prepared to hear nasty things about your body.) I'm grateful they were so cautious to take the time to do so.
Take time to heal, be grateful for all things, laugh when you can and if you don't want them to see you cry...shower a lot. XOXO
I wasn't awake for it so don't know if it was really in my chest or not (though going back and reading an initial ultrasound report from weeks ago to point out where someone might be wrong sounds a bit extreme). I can only go by what my surgeon told me and he said it extended into the chest and that is why I had problems when I tried to reach across my body causing choking.
Ohhh surgeon is a way better source than intern! If you were told that then it's got to be true. I'm glad you are on the mend and getting healthier by the day. XOXO gonna nap again hypo lady luvs her naps
In october of last year (2009), I had a thyrodectomy because of a growing nodule, I am a female of 56 years old. Thank God the results came out be benign.
After the surgery I gained allot of weight. My synthroid doze was modified, but even though it was modified I started to feel myself extremely different: My eyes swollen all the time, retentions of water, puffiness, a horrible back pain from my torax all the way to my sacro. I am not remotely the person I used to be. My skin is dryer, I am so tired, depressed seeing myself so ugly,so old, I am 56, and a very active person, never been told I looked my age, Now I feel like a very old woman. I worked out 4 days a week, Now with my bak pains I cannot work out... I hav had MRI's to my lumbar and sacro, and wet to see the neuro surgen who told me, I had nothing that bad in my back that coincide with the pains I manifest..., that frustrates me.
My question is; Although and suposedly my thryroid dosage is gthe appropiate one, is there a huge change when the thyroid is completely removed? I know the thyroid is the second most important gland in the body. Can so may conditions appear after its total removal?
I had a hemithyroidectomy (Left) last Friday, July 2nd. The surgery was scheduled for 7:30 am and lasted 2 hours. I thought that I would be out of the Recovery in 2 hours, boy was I wrong. I had the surgery at NY Presbyterian Weill Cornell in NYC. My surgeon is the Chief Endo surgeon there. Everyone treated me so well, from the guards at the door upon arrival at the hospital, to the Pre-Op Nurse as well as the Nurse Mary in Recovery 1 and all of the other nurses in Recovery 2. My surgeon and his staff were excellent as well. I had never had surgery before; my body was a bit more sensitive to the medicine that they give you to help put you to sleep....I stayed in Recover 1 for 5 hours...I am so used to sore throats that thhe one that I had because of the breathing tube did not really bother me as much as I thought it would....The pain that I felt most was that if the incision in in the front of my neck...I was given pain medicine via IV. When I stabilized and was able to drink water and eat jello I was transferred to Recovery 2. I felt a little sick so they gave me medicine in my IV to deal with it and it worked out fine. I stayed for an hour, they gave me a peanut butter and Jelly sandwich which went down fine. They also gave me 2 vicodins as well as a prescription for 40 vicodins ( I only had to use 9 of them in total). I am not used to being home ( I work in the city), and had to most of the time I recovered because of a heat wave that hit the north east. I have steri-strips on my neck, which my surgeon said that I have to leave on until my first post-op visit approx 1 1 /2 weeks after surgery. He will them remove them (They have blood on them still) and then will put new steristrips on for an additional 2 weeks. I have Hashimotos Thyroiditis so I was already hypo before surgery. I am currently taking 75 mcg generic of synthroid.. My surgeon wants to wait a few weeks before drawing blood, he will them check my numbers again. My surgeon is a different doc from my regular ENDO. My regular ENDO also wants me to do a blood work up and wants info for my Vitamin D, and Metabolism as well as TSH. So far, I feel ok on the 75 MCG of synthroid. My regular ENDO said that it is true that if you remove half of your thyroid the other half will kick in, but for me it is different because my thyroid is already compromised because of the Hashimotos.
I am sorry that you are not feeling well. Did you have hypothyroidism before surgery? It does take a while for the thyroid hormone replacement pill to regulate in your body. What dosage of synthroid are you taking? Are you going to an endocrinologist or your general doctor? If you are not seeing an Endo, I highly advise that you do. If you are seeing an ENDO, and he/she is strictly only going by the blood work results and is not listening to how you really feel I would see another ENDO. I changed Endos several times; the endo that I have now had a waiting list of 3 months but sure was he worth it. He is great! He listens to me and questions me on how I feel. He reviews the blood work and goes over my diet in great detail. He makes me question the things that I find on the internet and asks me why I might agree or disagree with what is written. He is also a specialist on Metabolism and has me constantly thinking about whether I am eating is healthy or not healthy. When I told my OLD endo that I had pain in my throat by the thyroid, she said that "It was all in my head". I left her office knowing that I would NEVER be back. When I mentioned this to my Endo Surgeon (He is different tham my regular Endo), he laughed so hard at her response that he nearly fell off his chair. He then said, "Unbelievable". So you see, it really does depend on your endo. The labs that you go to can differ as well. Some labs say that a "normal" TSH is anywhere between a .4 and a 4.0 while others say it is between a .3 and a 3.0. My surgeon and my regular endo both said that they wanted my TSH between a 1 or a 2. Before surgery, it was a 2....I have to see the final pathology reports as well as my latest labs to see if the synthroid (Which I get the generic in Target for only $4.00) has to be changed. Actually that is another thing my regular endo said to me. I said I ahve done some research on the internet and see that alot of people are taking Armour. Should I switch? He said that the synthetic syntroid that I am taking is like a BRAND to you beccause Target has been using the same manufacturer (Mylan). He said that if you take Armour that it is a differtive between a pig/horse thyroid hormone. And as such, you will be putting more foreign things into your body that your body does not need.....so, as your doctor, i would advise you to stick to what you are currently taking because i like where your numbers are with it.
I hope this helps...Let me know how else I can help.
Today is a week since my TT. I feel ok, I just tire fast & feel groggy/foggy. My biggest concern is the neck swelling! I feel like I have a golf ball at the base of my throat. Finding a comfortable position to sleep in is an adventure since I feel like someone is strangling me.
Anyone else have this swelling and hard lump at the base of the neck? I see the surgeon for post-op exam tomorrow. Just wondering...Thank you!
Wednesday, Feb. 1st will be a week since my TT. I too have swelling and feel a lump in my throat. Can't get in a comfortable position to sleep so I basically prop up on pillows. I have began coughing quite a bit at night when I try to sleep too. I feel like I can't breathe (have never liked anything around and/or close to my neck...jewelry, turtle necks, t-shirts, anthing) so I take a very low dose of zanex to relax. Any suggestions?
I return to surgeon Wednesday...surgery showed no cancer but still waiting on lab results! So thankful to have found this forum. God Bless you all.
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