6 YEARS ON

maggie_27

Hi everyone, this is my first time, so please go easy on em.! lol
i'd like to ask if anyone whom has had thyroid cancer is still undergoing treatment after 6 years, im now in the hands of the hospital and they say im a "special case" the hospital cant get my levels down i've had a complete thyroidectomy and they found cancer near my colar bone about 12 after that then iafter years of tests and more treatment they have once again found suspect tissue in my gland unger my jaw and they think there is a suspect spot in my lung, but they leave it and leave it now have decided to go with another iodine treatment this coming friday, can anyone tell me if they to are having so much trouble. im over it i feel so sick going off the tablets, i cant find work cause every 3 months i must go for tests, im not sick enough for sickness benifits and frankly if i hear them say one more time "are you feeling a bit ordinary" i will knock someone out.
i have stuck on the weight and whilst off the thyroxine i plow up have bowl trouble, cant walk and i look like im 9 months pregnant and my eyes swell and i cant see to good......surely this just isnt right?
can anyone help.! tell me it happens to others too.
cheers and thanks

sunnyaz

You are not alone
There are several Thyroid cancer patients on this board that have had the same recurrence you are having. Thyroid cancer will metastasize if not watched carefully for many years after diagnosis.

If you are off of your medication you are probably having Hypothyroid effects. The swelling; I have not experienced, there may be another underlying problem with that. I did not go off my medications to do the RAI. I did the Thyrogen injections instead. Talk to your doctor as soon as possible about these symptoms. It sounds like water retention which can be minimized by a water pill, i.e Hydrochlorithyozide(HCTZ).

Are you doing the Low Iodine diet to prepare for your Radioactive Iodine treatment?

Do you have a good Endocrinologist and Oncologist? What state/country do you live in? Maybe it's time for a second or third opinion and maybe more aggressive treatment.

Blessings,
Julie-SunnyAZ

maggie_27

sunnyaz said:

You are not alone
There are several Thyroid cancer patients on this board that have had the same recurrence you are having. Thyroid cancer will metastasize if not watched carefully for many years after diagnosis.

If you are off of your medication you are probably having Hypothyroid effects. The swelling; I have not experienced, there may be another underlying problem with that. I did not go off my medications to do the RAI. I did the Thyrogen injections instead. Talk to your doctor as soon as possible about these symptoms. It sounds like water retention which can be minimized by a water pill, i.e Hydrochlorithyozide(HCTZ).

Are you doing the Low Iodine diet to prepare for your Radioactive Iodine treatment?

Do you have a good Endocrinologist and Oncologist? What state/country do you live in? Maybe it's time for a second or third opinion and maybe more aggressive treatment.

Blessings,
Julie-SunnyAZ

your not alone
thank you for your reply
i live in australia, victoria.
i am trying to have a low iodine diet, and its been the first time they have asked me to do this in all these years. they arre thinking now maybe they will do chemo, due to the spot in my lung, but they dont seem to be as concerned as i am about that one, it was about 2mm in size and they say they are watching it. what bothers me is that it has spread and i read reports about if it spreads it can be deadly as it can get into the liver lungs(as maybe in my case now) or bones.
i have different endocrinologists as im in the care of the hospital and it is a public hospital so i dont get to choose although i have managed to stay with the same 2 now for a while.
they call me their special case as they have big board meetings about me with all the specialists, but that worries me "special case" as i feel i may be becoming their test case as they dont know what to do for me.
i worry allot due to the fact there has been many different cases of cancer in my family and feel this is leading to something more. am i just you think.

well thank you, i appreciate you talking and helping
regards
margaret

sunnyaz

maggie_27 said:

your not alone
thank you for your reply
i live in australia, victoria.
i am trying to have a low iodine diet, and its been the first time they have asked me to do this in all these years. they arre thinking now maybe they will do chemo, due to the spot in my lung, but they dont seem to be as concerned as i am about that one, it was about 2mm in size and they say they are watching it. what bothers me is that it has spread and i read reports about if it spreads it can be deadly as it can get into the liver lungs(as maybe in my case now) or bones.
i have different endocrinologists as im in the care of the hospital and it is a public hospital so i dont get to choose although i have managed to stay with the same 2 now for a while.
they call me their special case as they have big board meetings about me with all the specialists, but that worries me "special case" as i feel i may be becoming their test case as they dont know what to do for me.
i worry allot due to the fact there has been many different cases of cancer in my family and feel this is leading to something more. am i just you think.

well thank you, i appreciate you talking and helping
regards
margaret

Hi Maggie
What type of Thyroid cancer were you diagnosed with six years ago? I am curious because here in the US, if you are diagnosed with Papillary they now do a test for the B-RAF mutation gene which is a genetic malformation making this type of cancer more aggressive and more likely to metastasize. I wonder if they have considered testing your tissue for this. If they are considering Chemo, you may have a Hurthle cell type which is most likely to metastasize to the lungs.
Blessings,
Julie-SunnyAZ

maggie_27

sunnyaz said:

Hi Maggie
What type of Thyroid cancer were you diagnosed with six years ago? I am curious because here in the US, if you are diagnosed with Papillary they now do a test for the B-RAF mutation gene which is a genetic malformation making this type of cancer more aggressive and more likely to metastasize. I wonder if they have considered testing your tissue for this. If they are considering Chemo, you may have a Hurthle cell type which is most likely to metastasize to the lungs.
Blessings,
Julie-SunnyAZ

Sunnyaz
Hi, sorry i havent been well and havent been able to get to the computer.
I have had papillary. they just did the radio active iodine again and they say the scan was clear, but they didnt have the test results for the t3 etc levels, i will be talking to the hospital on the 18th and will ask them about what you have advised. thank you this sounds very interesting...here in Australia, it seems to me they are very behind in their testing.

thank you so much every one has been so helpful, it is great to go to the hospital armed with information

god bless you for your kindness.
regards
maggie_27

nasher

maggie_27 said:

Sunnyaz
Hi, sorry i havent been well and havent been able to get to the computer.
I have had papillary. they just did the radio active iodine again and they say the scan was clear, but they didnt have the test results for the t3 etc levels, i will be talking to the hospital on the 18th and will ask them about what you have advised. thank you this sounds very interesting...here in Australia, it seems to me they are very behind in their testing.

thank you so much every one has been so helpful, it is great to go to the hospital armed with information

god bless you for your kindness.
regards
maggie_27

only 1 year out for me but looking good so far but...
one thing I definatly wanted to make sure you know if they decide to put you on water pills IE Hydrochlorithyozide(HCTZ) like Julie mentioned (im on them for high blood pressure) until you have figured how they work on you do not be far between a bathroom for 3+ hours and make sure you take them at least 5 hours before bed or you will be waking up to pee.

oh and about being a special case... with medicical people being special or intresting are things I never like to hear. I loved it when I read the pathology report "We appreciate the opportunity to review this interesting case. The case was seen in staff conference..."

as far as the B-RAF mutation test ... some times they now do the test in the US... I am still waiting from a call back from my endo about that one.

other signs that you might be a special case...
1) when you show up to a medical appointment and they say ok your checked in as you walk in the door.
2) the nurse/doctor/lab tech recognizes you out in town and comes up to say hi.
3) when you see a new doctor and they start off with so your the one...
4) when you realize there are 20+ resident doctors in a medical hospital 50 miles away (not your main hospital) who have written up there thesis on your case.
5) when you look over this list and say yes to all. (like me)

Craig

maggie_27

nasher said:

only 1 year out for me but looking good so far but...
one thing I definatly wanted to make sure you know if they decide to put you on water pills IE Hydrochlorithyozide(HCTZ) like Julie mentioned (im on them for high blood pressure) until you have figured how they work on you do not be far between a bathroom for 3+ hours and make sure you take them at least 5 hours before bed or you will be waking up to pee.

oh and about being a special case... with medicical people being special or intresting are things I never like to hear. I loved it when I read the pathology report "We appreciate the opportunity to review this interesting case. The case was seen in staff conference..."

as far as the B-RAF mutation test ... some times they now do the test in the US... I am still waiting from a call back from my endo about that one.

other signs that you might be a special case...
1) when you show up to a medical appointment and they say ok your checked in as you walk in the door.
2) the nurse/doctor/lab tech recognizes you out in town and comes up to say hi.
3) when you see a new doctor and they start off with so your the one...
4) when you realize there are 20+ resident doctors in a medical hospital 50 miles away (not your main hospital) who have written up there thesis on your case.
5) when you look over this list and say yes to all. (like me)

Craig

Hi Craig,
where you trying
Hi Craig,
where you trying to give me some valuable information cause i missed it. lol
i have found out i dont have water retention, i have a lazy bowl and all i eat sits in the top bowl and i cant pass anything, its been 2 weeks and even with all the chemicals they are pumping into me, i still havent moved anything..

going for iodine treatment results tomorrow so am interested as the t3 etc levels have not gone down, im now thinking that the spot in my lung is tyroid tissue residual that may also be cancerous.!

it stinks, i hate all these tests but i know deep down they are for my benifit, but i still say it stinks.!

thanks for your email
margaret

3boys_mom

nasher said:

only 1 year out for me but looking good so far but...
one thing I definatly wanted to make sure you know if they decide to put you on water pills IE Hydrochlorithyozide(HCTZ) like Julie mentioned (im on them for high blood pressure) until you have figured how they work on you do not be far between a bathroom for 3+ hours and make sure you take them at least 5 hours before bed or you will be waking up to pee.

oh and about being a special case... with medicical people being special or intresting are things I never like to hear. I loved it when I read the pathology report "We appreciate the opportunity to review this interesting case. The case was seen in staff conference..."

as far as the B-RAF mutation test ... some times they now do the test in the US... I am still waiting from a call back from my endo about that one.

other signs that you might be a special case...
1) when you show up to a medical appointment and they say ok your checked in as you walk in the door.
2) the nurse/doctor/lab tech recognizes you out in town and comes up to say hi.
3) when you see a new doctor and they start off with so your the one...
4) when you realize there are 20+ resident doctors in a medical hospital 50 miles away (not your main hospital) who have written up there thesis on your case.
5) when you look over this list and say yes to all. (like me)

Craig

LOL
Craig,
I love your sense of humor! I have twp to add if I may:
6) When you are telling the anesthesiologists that you do not react well when waking up from anesthesia and the nurse in the room exclaims "Oh my God, I remember you!! Doctor she is not kidding!" She was the nurse from a surgery four years prior!!!
During that time I had two surgeries close together and after the second one my OB was standing at the end of the bed with the sedative. He wanted to see the reaction since I had been the talk of the hospital the time before. LOL
7) When you are given a epidural and they move you to the operating table and the anesthesiologist *FREAKS* out because I can move my legs. I tell him to give it a few more minutes, it will be ok. It was. He had never seen anything like it before.

I love number 3!! Several in my family carry that honor!
Sarah

nasher

3boys_mom said:

LOL
Craig,
I love your sense of humor! I have twp to add if I may:
6) When you are telling the anesthesiologists that you do not react well when waking up from anesthesia and the nurse in the room exclaims "Oh my God, I remember you!! Doctor she is not kidding!" She was the nurse from a surgery four years prior!!!
During that time I had two surgeries close together and after the second one my OB was standing at the end of the bed with the sedative. He wanted to see the reaction since I had been the talk of the hospital the time before. LOL
7) When you are given a epidural and they move you to the operating table and the anesthesiologist *FREAKS* out because I can move my legs. I tell him to give it a few more minutes, it will be ok. It was. He had never seen anything like it before.

I love number 3!! Several in my family carry that honor!
Sarah

yea i forgot about 6
i wake
yea i forgot about 6
i wake up swinging so on my 2-4th surgereries they straped my arms and legs down. its in some anistesiologyst system when they talk about surgeries they look it up even at other hospitals...

definatly got to see if we can make a list of things.

sorry some of my posts are not as informative and sometimes i try to lighten the mood up.. and most the time i have to re-read what i posted a few days later some of that fuzzy memeory stuff.

is there anything they can do for you "lazy bowl" cause to me that sounds like it could be a serious complication.

poppit

maggie_27 said:

Sunnyaz
Hi, sorry i havent been well and havent been able to get to the computer.
I have had papillary. they just did the radio active iodine again and they say the scan was clear, but they didnt have the test results for the t3 etc levels, i will be talking to the hospital on the 18th and will ask them about what you have advised. thank you this sounds very interesting...here in Australia, it seems to me they are very behind in their testing.

thank you so much every one has been so helpful, it is great to go to the hospital armed with information

god bless you for your kindness.
regards
maggie_27

Hi Maggie
How are you? I was reading the posts that followed your question...they are really trying to lighten the mood.

Your case sounds serious enough. I have been at this for only two years and I am learning that a lot can happen in one year.

I will pray for you and your situation. I wish I could tell you something profound, but I am just learning about recurrence myself. When I get to talk with my doctor today, I will let you know what I know. Until next time, try to do your best.

Oh, by the way, I can empathize with you about the going off meds until you scan then going on and tired and working...I am a teacher in the U.S. and "get my summers off" but school starts back in two weeks and I am stressing about new tests/treatment at this time. Sounds like I have a lot more to be thankful for than I thought. SThank you for the lift!

Blessings, poppit