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Old 02-08-2009, 06:46 PM   #1
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Papillary thyroid cancer

So my suspicious slides were sent to another pathologist who deemed I was positive for papillary cancer. Great. Although I guess I'd much rather know than have my thyroid removed for only being suspicious. My biggest problem is knowing when to have the surgery done. I am getting married April 25. So I have a lot of events coming up where I have to be awake and around people. Translation- I Don't want to be radioactive or hypothyroid. I know they say papillary cancer grows slow in young people, but how slow? My endo will only say get it out ASAP!

It sucks. I refuse to postpone my wedding (can't get deposit back), but what if it spreads?

I have ready horrible stories about radioactive iodine on the internet. I am more scared of RAI than the actual surgery.
I am also shocked that they have to make you hypothyroid to do the RAI. I am already fat and tired, and I'm probably going to be more fat and tired? I know it's a small price to pay for being cancer free, but it sounds awful. Also you can lose your sense of taste from the RAI and develope life long complications? Ugh I am so stressed

My insurance also sucks right now. I was too tired to work (despite not being hypothyroid.... right), and I quit my job. I pay 300 bucks a month for terrible COBRA coverage. It only pays 80% of all services.

So I will be starting my marriage unemployed, having cancer, probably being thousands of dollar in debt, fat, and feeling hopeless. My fiance is on the verge of leaving me because he thinks I have given up on life. I know there are people out there who have it much worse than me though. How does everyone deal? Will waiting 3 months for surgery be a huge mistake?

 
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Old 02-08-2009, 07:00 PM   #2
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Re: Papillary thyroid cancer

wow I sound really whiny eh. Does anyone if they automatically give RAI to everyone with cancer?

 
Old 02-08-2009, 10:53 PM   #3
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Re: Papillary thyroid cancer

Hi Loralei! Wow, girl, I'm sorry you have so much going on right now! I'll give what advice I can:

1. It's not wise to wait to get out the cancer (I'm sorry, that's stinky for you to hear right now) because it CAN grow and spread to your lymph nodes. There is a chance you will not be too bad off during your wedding if you get it done immediately. My surgery was June 30th, RAI Aug. 6th (pushed back a week because I took multivitamins w/ iodine in them) and I was able to start teaching again Aug. 29th.

2. I am not sure if every thyroid cancer patient has RAI after surgery, but it's basically impossible to take out ALL the thyroid tissue. The RAI, as I understand it, kills all the tissue they couldn't get out during surgery. I had my misgivings about it, but they did not give me a choice. I had a double dose of RAI because the cancer was so bad, and although I had taste problems for about a month afterward, I have had no other side effects.

3. Have you talked to an ENT or is your Endo going to do the surgery? It sounds like the whole insurance thing won't improve in the 3 months you want to wait. If it were me, I would definitely do it ASAP.

4. Try to explain to your fiance that a LOT of what you're feeling has to do with the thyroid problems you are having. Thyroid issues can lead to depression, anxiety and a host of other emotional issues. You both should see an improvement in all those issues after you get regulated on meds. This can take months, but it will be worth it!!!

I think you are such a trooper! Good luck with everything!
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Old 02-09-2009, 05:29 AM   #4
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Re: Papillary thyroid cancer

How large is your nodule?

It is a slow growing cancer, and you can wait, but I would talk to the surgeon. I saw my surgeon after my cancer fna the first week of january, and waited until the first week of february because I had a vacation booked, and my surgeon said it was fine because that's how far he scheduled out anyway and it wasn't an emergency, but it is urgent.

I am concerned about your switching insurances, because now you have a "pre-existing condition" with that fna.

In terms of RAI, if the nodule is over 1cm, they usually recommend RAI, but you can definitely put that off for a few months, it was offered to me, and the girl next to me had to do it in the summer because she had babies and needed a time when she could get help.

So personally, I would go for the surgery sooner rather that later (mine was pretty easy) and get that cancer out before the wedding. Then I would wait until after the wedding to schedule the RAI (go on meds right after the wedding)---But you should talk to your surgeon and get his/her professional opinion, as this is cancer.

 
Old 02-09-2009, 07:10 AM   #5
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Re: Papillary thyroid cancer

It is only FEb. If you do it right away, you will be doing RAI and taking meds and be back on your feet before the wedding. I know this for a fact.

My brother was diagnosed with papp at age 26 and had a TT.
He said they allow you do RAI within a few days to a few weeks after surgery. It varies.
he didn't start meds until 6 weeks later. his surgeon wanted to see if any tissue grew back after RAI so they scanned him at 5 weeks. It was ok and he started meds.

he has never had any problems since his surgery and RAI. Many years after the RAI he developed ulcerative colitis which was managed by steroids. However, he is doing great now. It has been 18 years for him. Total Thyroidectomy.

I have had my surgery for one lobe, and am waiting to see if more surgery will be done. Also have to see the Endo to make sure I am not getting hypo from having just the one lobe to do all the work.

I say stick with your insurance and have your surgery. If you tried to change now---no one new would cover a pre-existing condition and then where would you be?

 
Old 02-09-2009, 06:10 PM   #6
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Re: Papillary thyroid cancer

Loralei,

I am currently recovering now from a total thyroidectomy (1-9-09). I had RAI friday.(2-5-09) The worst I've felt through the entire process was this Fri, Sat and Sun. I started my synthroid today and feel okay. My doctor wanted me to take a double dose so I get o where I need to be. I don't feel like running a marathon but I moved around a little today, more than I have for the past three days.

I had to wait 3 months before my surgery and it was a little hard to take. This cancer thing hanging over your head can be trying. I never realized how drained I was before the surgery. No one can explain it to me but a lot of weird symptoms I had for years suddenly cleared up. Anywho, If you do wait, you'll be okay. This, honestly, for me, was a walk in the park compared to other health issues I've had (Crohn's Disease).

If you get it now you'll be up and running quicker than you think. I can only speak from my own experience.

So, it's up to you. Keep a positive attitude and you'll be okay. I was really scared after reading some posts but you have to remember that there are complications and everyone is different.

Jeana

 
Old 02-09-2009, 07:46 PM   #7
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Re: Papillary thyroid cancer

Loralei,

I was in a similar position when my boyfriend developed Mono about 3 wks before our wedding. He was in serious condition. His surgeon was considering taking his spleen out if the steriods didn't work. We consulted our minister who said to go ahead with our wedding even if it had to be performed in the hospital. I can't remember his reasoning.

Here's my advice: Talk with an ENT. If you have any pressure symptoms be sure & tell him. My ENT wouldn't give me a timeline for papillary cancer, but he said it is slow growing. My daughter had papillary cancer last Jan.

If your US didn't have any red flags, your family history is clear, you don't have any pressure symptoms and the ENT gives you the go ahead, I would get married. My daughter had to wait about two months for her surgery.

Why not enjoy your wedding etc. before you have surgery which carries the risk of side effects. Hopefully your surgery will go forward without a problem but you just don't know. My daughter had a lot of complications. The surgeon will tell you if it is urgent.

Make sure your boyfriend knows what thyroid surgery involves so he can be there to support you. Fam

 
Old 02-10-2009, 12:57 PM   #8
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Re: Papillary thyroid cancer

Thanks so much for the support. It's insane how unsupportive some people in real life can be. My own mother found out my strongly suspicious biopsy, and she told me I was just being dramatic and I did not have cancer. She told me none of my health symptoms are from my thyroid and I'm just lazy and depressed and need to sleep better. I finally told her that my second opinion came back positive for cancer and she STILL said "are you going to get more tests done?"

She told me that I self diagnose myself on the internet, yet she read somewhere on the internet that only 20% of suspicious biopsies turn out positive for cancer. I explained this was not the same as my case, but she would not hear it. What a hypocrite. I had to see her endocrinologist just to shut her up, he took one look at me and told me non toxic multi nodular goiter, I just needed a psychiatrist. Well turns out he did not have my biopsy results in hand. He finally got them and said oh yeah you definitely need to have surgery.

 
Old 02-10-2009, 01:02 PM   #9
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Re: Papillary thyroid cancer

I scheduled my surgery for a couple weeks from now. I can't take the worry. My nodule is only about 1cm and my lymph nodes look clear, so there is a strong chance I will not need ra iodine, or if I do, it can probably wait a while. I realized I was postponing surgery for all the wrong reasons, namely my mother putting doubt in my head. If it turns out worse than expected, I can deal with it.

 
Old 02-10-2009, 01:11 PM   #10
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Re: Papillary thyroid cancer

Quote:
Originally Posted by jeananaye View Post
Loralei,

I am currently recovering now from a total thyroidectomy (1-9-09). I had RAI friday.(2-5-09) The worst I've felt through the entire process was this Fri, Sat and Sun. I started my synthroid today and feel okay. My doctor wanted me to take a double dose so I get o where I need to be. I don't feel like running a marathon but I moved around a little today, more than I have for the past three days.

I had to wait 3 months before my surgery and it was a little hard to take. This cancer thing hanging over your head can be trying. I never realized how drained I was before the surgery. No one can explain it to me but a lot of weird symptoms I had for years suddenly cleared up. Anywho, If you do wait, you'll be okay. This, honestly, for me, was a walk in the park compared to other health issues I've had (Crohn's Disease).

If you get it now you'll be up and running quicker than you think. I can only speak from my own experience.

So, it's up to you. Keep a positive attitude and you'll be okay. I was really scared after reading some posts but you have to remember that there are complications and everyone is different.

Jeana
I am so glad to hear you are doing better. I too, have had tons of symptoms that started a couple years ago. These symptoms are all similar to hypothyroid ones. Yet all the doctors with whom I speak say cancer does not cause these symptoms, and I should feel fine. It's maddening. My nails started breaking and splitting, I can't wear my contact lenses anymore because my eyes are too dry, I am always tired and cold, I've gained about 40 pounds, I have depression, heart palpitations, and trouble sleeping. Yet no doctor really seems to take these seriously.

 
Old 02-10-2009, 06:43 PM   #11
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Re: Papillary thyroid cancer

Loralei,

Glad you have made your decision. Make sure your helper/caregiver checks on your calcium level after surgery & several days after discharge when it sometimes drops. The parathyroids are usually on the back of the thyroid & may get damaged during surgery. They control the calcium level in the body. This is where my daughter got into trouble because her Dr. didn't call her & tell her that she needed to start on calcium She got very low on calcium & had trouble getting her levels up. She had to take so much calcium that it caused a problem with her kidneys so she had to take a b/p med to protect the kidneys which lowered her b/p too much. In this case, an ounce of prevention is worth a pound of cure. Hopefully you will just sail through this event. Just ignore your Mom, she probably means well in her own way. Change the subject when she starts on her soapbox. Fam

 
Old 02-11-2009, 11:33 AM   #12
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Re: Papillary thyroid cancer

A poster mentioned not being able to wear contacts anymore. I have been wearing contacts for 30 years and this last year I had to stop. I just couldn't see out of them after an hour or two. but would I have thought that my thyroid malfunctioning was responsible? NO!

We never think of the thyroid do we? And now we find out that it is responsible for sooo much.

It is amazing what that nodule has been doing to me over the last few years. Besides sapping my energy and sense of well being, I have gained weight and have had the worst night sweats. I will say I knew inside my soul that something was wrong with me. But finally I found out.

Thank goodness I had an ENT who would not take no for an answer when it came to the surgery.
He correctly said that the growth is doing you NO GOOD even if it is benign.
A large growth is keeping the thyroid gland from functioning 100% ---you will see how much better you feel once your surgery is over.

Don't let others, even docs make you think you are a hypocondriac. My ENT initially thought I was making a mountain out of a molehill with my swollen lymph glands. But he sure changed his tune about the thyroid.

If more women had these bloomin' nodules removed, maybe we wouldn't be gaining weight, getting demented and feeling so lousy.

One of my nurses said point blank, "the thyroid basically just wears out by the time women are 50 or 60.
A friend of mine's 92 year old mother just had a large thyroid nodule removed.
She did fine.

Last edited by golfhat; 02-11-2009 at 11:35 AM.

 
Old 02-11-2009, 02:45 PM   #13
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Re: Papillary thyroid cancer

I was in the same boat , scared, overwhelmed & very anxious. I had a nodule that turned out to be cancerous & had surgery 12-2, had RAI 1-7-09 & never thought I would make it through but somehow I did. There are alot of things going on for you right now & I can totally relate. I learned I had to take one day at a time & not try to see into things so much. I was shocked I had cancer in the first place, didnt find out until I woke up from surgery. I was so scared of the RAI but it wasnt as bad as I had anticipated. The worst part was the isolation but just get through the surgery & then deal with that if you have to have it. As far as I know they usually do the RAI after cancer to kill the remaining cells so that is good. So many people on this board helped me through so keep asking questions. We are here for you.

REE

 
Old 02-25-2009, 10:58 AM   #14
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Re: Papillary thyroid cancer

I just got home from my surgery and I feel like a million bucks! I can move and eat almost normally. I thought I'd be stuck in bed for a week, but I am up and about after a day. Nothing too strenuous though. Perhaps I feel good because I am so relieved to have the beast gone!

 
Old 02-26-2009, 07:59 AM   #15
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Re: Papillary thyroid cancer

Quote:
Originally Posted by famnd View Post
Loralei,

Glad you have made your decision. Make sure your helper/caregiver checks on your calcium level after surgery & several days after discharge when it sometimes drops. The parathyroids are usually on the back of the thyroid & may get damaged during surgery. They control the calcium level in the body. This is where my daughter got into trouble because her Dr. didn't call her & tell her that she needed to start on calcium She got very low on calcium & had trouble getting her levels up. She had to take so much calcium that it caused a problem with her kidneys so she had to take a b/p med to protect the kidneys which lowered her b/p too much. In this case, an ounce of prevention is worth a pound of cure. Hopefully you will just sail through this event. Just ignore your Mom, she probably means well in her own way. Change the subject when she starts on her soapbox. Fam
The staff at my hospital were amazing. They would not let me leave until they checked my calcium levels. They told me to buy some tums just in case, but I have not yet needed them. I'm supposed to watch for cramping and tingling, correct?

 
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