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MOGAL64's Photo MOGAL64 SparkPoints: (102,033)
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1/25/14 4:11 P

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Welcome to the group. Yes, after the doctor got my meds at the right level I lost about 15 lbs. down to the weight I was before I had the growth on my Thyroid.

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RUBYYR's Photo RUBYYR SparkPoints: (33,750)
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1/24/14 4:34 A

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Welcome to the group Sashmil!

We've not been too active lately but hang in there and some folks may dop by. Yes it's possible to lse weight after treatment for thyroid cancer. Have you Lund the group THYCA.org? there's a lot of great information and support there too.

Do you know what yout treatment plan will be?

Feel free to ask questions. We know it's a shocking diagnosis to get. Glad you ounce our group!

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss
SASHMIL's Photo SASHMIL Posts: 824
1/21/14 6:44 P

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Hi Everyone! I am so happy I found this group! I was diagnosed with Papillary thyroid cancer two weeks ago and I have an appointment next week to see the surgeon. I hadn't been feeling myself for months (tired, edema, moody, difficulty loosing weight, short of breath) and thought something was wrong with my thyroid and after multiple tests to rule out everything it turns out I was right. I was really shocked when I found out since my OB and Endocrinologist originally thought I was just low on iodine due to my recent pregnancy and breastfeeding.

I was looking on some of the threads on here and was excited to see that you guys have been able to loose weight even after having your thyroid removed! I talked to a few co-workers who have gone through it and read on-line and was hearing it was impossible to loose, which was really stressing me out since I haven't been able to loose the baby weight yet.

I have to go feed the boys (I have a three year old and 8 month old). I will be on later with more questions. Thanks :-)

To reach a port we must sail, sometimes with the wind and sometimes against it. But we must not drift or lie at anchor.
- Oliver Wendell Holmes


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RUBYYR's Photo RUBYYR SparkPoints: (33,750)
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3/10/12 9:49 P

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Mogul,

Clorox wipes will not protect anyone from radioactivity. Bleach and chemicals in wipes kill bacteria. The only thing that eliminates Radio active Iodine (RAI) is time, it gradually becomes less radioactive over time. It takes 8 days for it to become half as strong, then another 8 days, and another, and another, etc.

You are trying to eliminate any radiation exposure to others who will enter your home. Once you take the RAI, you will begin to eliminate the radioactive material from your body. It is eliminated through your urine, sweat, and anything else that comes from your body. It is easiest if you wrap your phone and computer keyboard and even your Nook in plastic wrap (like saran wrap). I also recommend buying some inexpensive disposable gloves. I used the very thin ones from Costco for kitchen prep. That way, you will be able put them on when touching things in your house without the worry of tiny amounts of radioactive perspiration from your hand getting on anything. Keep the trash separate and throw away the plastic wrap at the end of your isolation. Throw away the gloves whenever you wear them.

Please, please, please read the information from Thyca dot org regarding what to do after receiving RAI You can see it at the link below. You should also ask the Nuclear Medicine MD (the one who gives you the dose) any remaining questions BEFORE you receive the dose. Not after, they will want you to move to isolation right away (Remember, the nuclear medicine folks are exposed to radioactivity every day, they must minimize their exposure).

www.thyca.org/rai.htm#after

Check out the Thyca.org website, there is a ton of information there that is useful.

Let us know how you do!

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss
MOGAL64's Photo MOGAL64 SparkPoints: (102,033)
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3/9/12 9:50 P

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I will be doing the isolation at my apt, no hospital, and my 11 y/o son will be staying in a hotel with his Grandfather.

While in isolation, since I will be the only one in the apt, Can I use the phone or computer if I clean them with say a Clorox wipe? What about the living room furniture, microwave, etc.? I have a stack of magazines to read so I won't contaminate my Nook if I can't use that.

Also I was told to clean the toilet and shower real good when the 72 hrs of isolation is over, does that just mean scrub extra hard or is there something I can use?

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RUBYYR's Photo RUBYYR SparkPoints: (33,750)
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1/22/12 11:00 P

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Depending on the surgery, it is usually a pretty quick recovery. Your voice is hoarse for a couple of days after surgery (like any surgery) from the breathing tube during the operation. Some people have some long or short term nerve damage to the voice box (larynx). these are issues you should talk with your surgeon about.

You should be recovered from the surgery quickly but if you are hypothyroid for the RAI (often done right after surgery) that might make it tricky to go back to work - depending on your job. There is a medication called thryorgen that can make it so you don't have to go hypothyroid for the RAI but I think most endos still have people go hypo. More questions to ask your endo.

I highty recommend you read the information for 'newly diagnosed' on the thyca . org website. There is a lot of information there.

I stayed in the hospital overnight after the RAI, the nuclear medicine MD came in and tested my radioactivity levels and I was discharged when they thought it was safe. I had little children at the time and they took an extended trip (grandma's, Disneyland, they had fun) during the week I got home. The nuclear medicine MD can give you more specific information on that because it depends on your dose.

I don't think I had much neck swelling. I kept the surgical scar covered with mock turtle necks, scarves and scar tape for a full year. I kept the sun completely away from the scar for a whole year and I have a very faint white line now and you can hardly see it - it was ugly and red in the beginning.

A few weeks after surgery, I did notice a feeling of tightness by the surgical site, it lasted only a couple of weeks. I had read on the thyca website that many people experience this so I was not worried.

I also brought very sour dried cherries into the hospital after the RAI, It is supposed to help protect salivary glands from the RAI. Most people bring sour candies to suck on as often as possible. Also drink a lot of water after the RAI, it will get rid of the excess quickly.

It is also recommended you go on the Low Iodine Diet before RAI, you can get more info and a cookbook about this on the thyca . org website.

I think I got all your questions!

Take care and let us know how you do!

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss
MOGAL64's Photo MOGAL64 SparkPoints: (102,033)
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1/22/12 2:27 P

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I got the diagnosis of Papillary Thyroid Cancer last fall and will have the surgery on Feb. 9 to remove my thyroid.

How soon after the surgery are you able to speak again?? My doctor said that if I had the RAI, I would be in the hospital for one night, and acted like I wouldn't have to do the 3 days of isolation, but will follow up with him on that. How long do I keep the bandages on?

How long is your neck swollen? I plan to go back to work on Feb. 21, is that too soon?
Happy to have this team to share my anxiety over the surgery and after care. emoticon

Edited by: MOGAL64 at: 1/22/2012 (15:39)
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RUBYYR's Photo RUBYYR SparkPoints: (33,750)
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1/21/12 1:07 P

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It is a scary time Nixy. We can all feel your pain. Have you visited the thyca . org website? There is a lot of information there, especially for people who have been newly diagnosed. There are lots of emotions that go along with a cancer diagnosis - hang in there. The worse part is in the beginning when it is all foreign and scary. Let us know if you have any questions.

When you visit the surgeon, ask how many thyroid surgeries s/he has done. Also ask about any complication rates such as voice problems. Some surgeons will just remove the thyroid and others will remove the lymph nodes so find out what this surgeon's plan is and find someone who you are comfortable with - who has done LOTS of thyroid surgeries. Some people see Ear Nose & Throat surgeons and others see general surgeons.

Thyroid cancer is usually slow growing so there is often lots of time to make decisions.

Let us know how we can support you!



“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss
NIXY72's Photo NIXY72 SparkPoints: (18,492)
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1/21/12 8:14 A

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I found a large lump in the side of my neck in October (after losing 20lbs here on spark people - I have no idea how long it's actually been there for), and was diagnosed yesterday with Papillary Thyroid Carcinoma. My nodule is 5.5cm. I see the specialist again Monday morning to get a surgical appointment. They will be taking out my thyroid and I just hope to god that it hasn't spread.

I'm terrified but trying to stay positive. It's so hard. I feel completely schizophrenic... one part trying to stay strong and logical while the other wants to go into a corner and wail. At the same time I feel so cliché.... why me? what if it's spread? and above all, is there anything I can do to help the process?

I feel so out of control. I hate being this scared. I'm just trying to remember to breathe.

"Argue for your limitations and sure enough they're yours."
Richard Bach

"Never give up. Never Surrender."
Galaxy Quest

"Life is always walking up to us and saying, "Come on in, the living's fine," and what do we do? Back off and take its picture."
Russell Baker
www.capturedsoulphotography.com


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JOYFUL711's Photo JOYFUL711 Posts: 1,625
3/24/11 12:08 A

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I am three years out, just had my third clean scan. Do be optimistic! This cancer is curable! I have to go to bed, but will check on you tomorrow afternoon.

Take care, 'Liz"


Joy

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3/23/11 11:45 P

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I am currently in quarantine for 3 days on RAI treatment and I was honestly fine with my diagnosis till I have spent all this time in solitude with my google medical degree and WebMD. I thought this would be a good place to start to ease my fears about all of this. I was told not to worry and that because they didnt even know it was cancer until after I had my thyroid removed and there is very little chance it has spread. But of course google has all these stories about it spreading to your lymph nodes and chemo and all sorts of things I was never scared of till now. I feel like my doctors were just trying to be optimistic for me. My cancerous node was only 1.7cm and they say they are blasting anything that could possibly be left with this I-131. Should I get a second opinion after my scan next week? Also, did anyone who had this treatment wear gloves everywhere and walk on plastic. They didnt tell me to but again google has me paranoid? any comforting words wold be a help right now. i am so ready to get back on my meds and start working out again but now I am just scared of everything!!

INTREPIDWOMAN's Photo INTREPIDWOMAN Posts: 171
10/17/10 4:38 P

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I am from Canada where our healthcare is touted as being "the best". It took 7 months to get all the thyroid tests, including biopsy, scheduled and once diagnosed with cancer, am now waiting 8 weeks to have thyroid removed. It might be one of the better cancers to have, but I think time must play an important part in one's survival.
While I wait for thyroid removal, I have extreme insomnia and sleep deprivation over the past few months, an eye tic that has turned into a whole right side of my face tic and I generally feel depressed and very alone in this. I am glad to have found this site on SPARKPEOPLE. I will continue to read and learn while I continue to wait for the surgery in mid November. Thanks!

SUNSET24's Photo SUNSET24 Posts: 3,878
5/27/10 2:35 P

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Hi just duckie emoticon and Ruby emoticon

Hoping you both are having a good day, smiles and justduckie, i hope recovery is speedy and the pain is manageable as you heal, hugssssssssssssssssss


In regard to the GOOD CANCER theory and how it makes people feel or Not feel..... Pleaseeeeeeeee know that your worries, feelings and concerns are VERY VALID and I pray you make an opportunity to express these feelings and concerns to your medical professional, doctor, surgeon and/or counselor.

My heart goes out to everyone for real.... I just wanted to share another view point if you will allow me too, hugsssssssssssssssss


emoticon My personal doctor AND surgeon BOTH told me the same thing.... that if ya gonna get cancer that the THYROID CANCER is the BEST cancer to get because the prognosis is always GOOD!



for me.... that statement was a RELIEF emoticon

and I will explain why:

Because when I heard the word: "Cancer" to be more direct it was dianosised as Follicular Neoplasm which the surgeon who did the biopsy said it was a Type of Thyroid Cancer.... but all I heard was the WORD "cancer" and its devestating... and if I remember correctly = I was in Shock!

and as much as I tried to push it to the back of my brain and NOT focus on it.... ya can't help BUT focus on Cancer because I began to think... oh lawrd, what will happen to my son, the house, how will he be able to afford the mortgage by himself and then I started to think about the days I had left on this earth, etc......

but again, the day of the surgery, 05/13/10, my surgeon ASSURED me and comforted me again by saying ... now don't forget that of all the cancers, THIS is the one to get if you are going to get cancer because thyroid cancer and it's easily fixable and healed and we have a GOOD SUCCESS RATE with the prognosis of success!

so again.... that relieved my worries because I was so scared before I went into surgery because maybe I may not wake up, etc..... but I did wake up! emoticon


emoticon WHY am I sharing this with you?


Because some may think that ANY type of cancer is not good or some may wonder is saying that thyroid cancer is the good cancer supposed to make people feel good when sometimes it may not make people feel better.....


I am sharing this with you, the reader because:

I do not think doctors tell us that its the GOOD CANCER to neglect our feelings or something like that.... I think they tell us that due to the history of thyroid cancer and it's usually positive OUTCOME and trying to somehow and in someway to relieve our worries is all.


Please know that I am here for everyone and am praying for everyone hugsssssssssssssssss


(((((((((((((( group hugs )))))))))))))


and thanks for reading, God Bless.


emoticon

Edited by: SUNSET24 at: 5/27/2010 (15:11)


RUBYYR's Photo RUBYYR SparkPoints: (33,750)
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5/24/10 10:07 A

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Welcome to our group Duckie! I'm glad you found us! It sounds like you've had pretty extensive surgery and I hope you have a speedy recovery.

The waiting-for-results part of the diagnostic process is the most difficult so hang in there and let us know how you do. The anxiety returns for me every year when I go through the re-evaluation process so it's good to form some strong coping skills during this difficult time that you can use every year when you re retested/evaluated/tracked (whatever term you like) for recurrence. Support is always helpful!

Have you found the thyca.org site as well? There is a very active board over there.

I have to agree with you about the annoying "good kind of cancer" statements, especially when you're not yet sure of your exact prognosis. Grasping the idea of being diagnosed with cancer is a whole new world unto itself. I found that I definitely had some negative thoughts about the "kind of people who get cancer". I didn't realize I had these feelings until I was diagnosed with thyroid cancer and then I had to put myself in that category too. It felt very alone to me - like being isolated on cancer island so finding others in the same situation was very helpful.

I had a huge awful incision that looked like railroad tracks post op but now all that is there is a very thin, white line. I never thought it would heal so nicely. I kept it covered and out of any sun exposure (high necks and scarves always). I also used silicone scar tape once the incision had healed. If you're interested, I've heard that homeopathic arnica pellets (go under the tongue) can be helpful for bruising during the healing process.

Glad you found us and keep us posted on your progress!

Ruby




“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss
JUST_DUCKIE's Photo JUST_DUCKIE Posts: 7,000
5/23/10 7:33 P

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I was diagnosed with Papillary Thyroid cancer on April 16th, after a 6-month process of monitoring several nodules on my thyroid gland.

I had a series of 3 ultrasounds, and then a FNA biopsy - they took three samples and they came back cancerous.

I had surgery (total thyroidectomy and radical neck dissection) on May 17th, and am now recovering at home. The surgery ended up being more involved than initially anticipated; they had to remove more neck tissue and lymph nodes than expected because they appeared to be "cancer-affected." Those are being biopsied now, and I should know within a month how far the cancer has spread beyond my thyroid gland.

I am supposed to have the radioactive iodine treatment in the next couple of months, although this plan may change based on the results of the biopsies being done right now.

One frustration I've had throughout the past month since diagnosis is the number of doctors and medical professionals that refer to thyroid cancer as "the good kind of cancer." My oncologist told me, "If you could have a menu of all the available cancers, this is the one you'd order." I know they are meaning to be reassuring, and to let me know that the outcomes of thyroid cancer are generally very good. But I find that label "the good cancer" SO unhelpful, because it really undermines the stress and life impact that people experience when they go through thyroid cancer.

I understand that the outcomes are usually very good, but that doesn't mean the treatment process is fun! Anyhow, that's my little vent.

Right now, I'm very swollen, still on a lot of pain medication, and nursing an awesome Frankenstein-like neck scar/bruise combo. I have my follow-up at the cancer clinic on Tuesday, and hopefully will find out a bit more about the next part of the journey.

Just found this group today, and looking forward to reading through the posts and getting to know other thyroid cancer fighters/survivors!



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SUNSET24's Photo SUNSET24 Posts: 3,878
4/29/10 8:34 P

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P.S.

thank you Ruby for posting the website www.thyca.org

I will go check it out now emoticon



SUNSET24's Photo SUNSET24 Posts: 3,878
4/29/10 8:31 P

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emoticon Hi everyone, I am glad this thread is here.... nice to have a place to go to.

Today is 04/29/10 and I had my biopsy done 2 days ago and got the results today from the doctor who did the biopsy.

He said I have Follicular Neoplasm

I asked him what that was in laymen terms

and he said ...

It is a type of thyroid cancer.

he said we just need to get it out.

I have my appt with my regular doctor on Tuesday to discuss it and schedule surgery.

Someone below mentioned that their thyroid was taken out.... I didnt know they do that... I thought the thyroid was important to like regulate body temperature and metabolism etc.

Kinda scary.

I wonder if it is necessary to take out the thyroid too.... although that would make sense kinda.

Edited by: SUNSET24 at: 4/29/2010 (20:32)


RUBYYR's Photo RUBYYR SparkPoints: (33,750)
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3/30/10 5:14 P

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Hi HC and AT

I'm glad you found us and welcome to our little group!

In answer to HC's questions about the low iodine diet and RAI...

Yes, I followed the low iodine diet, I think that many of us do, especially for the treatment dose of Radioactive iodine (RAI). It is a very healthy diet and there is really nothing wrong with it (it can even prevent weight gain). The biggest hurdle is to avoid any pre-made & restaurant foods. The reason for this is that unless you use non-iodized salt, it's not really possible to know if it was used or not. So if you plan on making your own food for a bit and watch the ingredients, you should be fine.

There is a great explanation of the low iodine diet as well as a free cookbook on www.thyca.org

The RAI that I took was a capsule, not a drink so you should speak with the nuclear medicine department where you will be treated to find out the specific information regarding the treatment. I did not notice any side effects and when I took it, I stayed overnight in the hospital. I understand this is rarely done anymore so again, you should check with the nuclear medicine department. Some people do experience some side effects so we'll have to wait and see who else chimes in here on that issue.

As far as going to work the week after the treatment, I would think that it would depend if you are hypothyroid or not. Some endos use a medication called Thyrogen where you don't have to be hypothyroid and others will still have you be hypothyroid. If you are hypothyroid, you may find it difficult to work. Usually, there is a scan about 5-7 days after the treatment and if you are hypothyroid, you may have to remain that way until after your scan. It may take a few days to weeks to re-energize. But the best person to discuss this with is your endo as they know what the specific plan is for you.

I really recommend reading the posts here and on thyca.org and writing down questions as they come up for your. Take these questions with you to your endo so you can find out exactly what the plan is for your specific case.

It's such a scary time and I'm glad you both found us here - again, WELCOME! Please keep your questions coming!

Ruby



“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss
ATTYCMF Posts: 2
3/29/10 4:31 P

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Hi,
I was diagnosed with pap ca 3 weeks ago and will undergo TT four weeks from now. I am very new to this disease and have been reading up a lot about it. Someone mentioned Spark People on the Thyca yahoogroup so here I am.
The mental and emotional struggle is the hardest part I have to deal with these past three weeks. The "why me?", "what now?", "what next?" and "what ifs".
I try to look at the bright side of my situation- I have a caring husband, my employer is very understanding, there are lots of very good doctors/facilities in NYC - but it's still a daily struggle.
I guess there is strength in numbers. I find strength and inspiration in reading posts by people have gone through, and are going through, thyca. Just knowing that I am not alone in this disease, that other people, albeit strangers online, will help me go through it, is comforting.

HCAVEUM Posts: 1
3/27/10 12:28 A

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Hi guys my name is Hayley and just recently got my thyroid taken out because of cancer. I am in college and it has been really hard to keep up but I have a couple questions. Did anyone go on the low iodine diet before the Radioactive drink, and was the diet really as bad as I heard. Also I am planning on starting my summer job a week after I have the radioactive drink thing, how did you feel after the treatment? Also drinking, is it ok to do when on levoxyl or are there any side effects?

BELLE52877's Photo BELLE52877 Posts: 174
1/17/10 5:23 P

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If you have been newly diagnosed with Thyroid Cancer this is the place to be. Post your questions, concerns, or feelings. We are here for you! :)

Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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