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anaplastic cancer of Thyroid

burd
Posts: 1
Joined: Jun 2001

I have a good friend who was just diagnosed with anaplastic cancer, the worse thyroid cancer there is. They don't give her much hope and have evened suggested no treatment. She is desperate to find someone else who has gone through this or maybe a family member who has had the same. Any information would be very grateful. Thank you!

aprillsdad
Posts: 1
Joined: Apr 2003

Hi, my name is Keith. my daughter who is 19 yrs old,got pregnantand had a babe on 1-28-03 she noticed a lump growing 21/2 months before she delived, the lump grew from a dime size to over a softball size lump in that time, we took her to the doctor and he told us that it was just a inlarged thyroid and that there was nothing wrong with her and after she had the babe they would remove it.the day came for her to deliver the babe ,at this time she could hardly breath,the hospital scoped her throat and found hardly any airway , they took emergency messures ,they had to airvac her from glenwood springs co. to denver,200 miles away to get a specialist to secure her an airway. we arrived in denver that night and the doctor told us that they would take the babe by c-section and secure her airway,then remove the thyroid. the next day the doctor went in to remove the tyroid and , he came out and told us that there was nothing they could do that it was not a tyroid problem but it was cancer and that this cancer had totally ingulfed her intire neck and everything vital in it.. we were devestated.all the specialist came in and told us that this type of cancer was called anaplastic tyroid cancer,and that there is no known cure,they told us thAT they would try agressive radiation and kemo treatmen, she was in a drud indused coma for 3 weeks ,also she never saw her babe that intire time, the pulmenary doctor told us that her heart was going to fail and if we want to remove her from life support, we never gave him that word ,because we never would give up hope on her,, while in the i.c.u.aprill(my daughter) developed a blood clot,my wife and i hit the floor we callled all the churches and family they came from many states ,my babe was dieing, we stayed by her bed side day and night never wanting to leave,we are beleivers in christ and when u believe and u pray with conviction althings are possible through the lord jesus christ...AFTER 3 WEEKS THE DOCTORS TOOK A CAT SCAN ,AND CAME TO US AND TOLD US THAT WE RECIEVED A MIRACLE AND THAT THE CANCER HAD SHRUNK OVER 50%
WE JUST SHOUTED FOR Joy .3 days later they took her off life sopport they said that they can see air all the way around her windpipe ..that day she saw her babe for the first time it was a boy.. she was shocked because she thought she was having a girl hahahaaa.well everyday she got stronger and stronger. she was released from the hospitalon 3-11-03 and has to resume treatment at the university of NEW MEXICO cancer research center, today 4-4-03 she saw the doctor , he told her that the tumor has shrunk even more ,and that the lump she feels is probably dead tissue, they will do a cat-scan in 2 weeks she smiling and laughing and taking care of her babe .. we are believing God will finish what he has started .. take care if u would like to talk u can email me at qfatplumber@aol.com

cindyr92781
Posts: 1
Joined: Jan 2009

how can we find you to talk to you ? are you still out there?

Mpamla
Posts: 2
Joined: Mar 2010

My husband (50 years old) was diagnosed with Anaplastic Thyroid Cancer in early June of 2009. A lump appeared, seemingly over night on the left side of his neck. We went directly to ER. Dr thought it was a goiter. I'm an ICU RN and knew that a goiter didn't appear that quickly. The next morning, I phoned his primary Dr and told him that we needed a CT scan, thyroid levels, etc. It showed a large mass, deviated trachea. My husband already was feeling constricted. We then had a needle biopsy that was inconclusive, then an open biopsy that showed undifferentiated cells (a hallmark sign of anaplastic). We immediately found a well known oncologist in a much larger nearby city (St. Louis) This oncologist is the head of the cancer treatment center at this certain hospital. He immediately said we needed to see a surgeon because this thing was growing so quickly. He phoned this surgeon and sent us straight to his office. The surgeon set my husband up for surgery the following Tuesday. This was Thursday. He said "you need help and if I can help you, I'm going to do it." The surgery was 6 hours long. Complete thyroidectomy and left neck dissection.He felt as if he got most of the cancer, except for a piece that was attached to his carotid artery. Three days later we got the exact diagnosis of Anaplastic Thyroid Cancer. This was June 28, 2009, a month after he first felt the lump. We were devestated. PET scan of body was clear, though, so surgeon and oncologist suggested radiation. 5 days a week for 7 weeks. He lost 65 pounds, was sicker than anyone I've ever seen, but he made it thru. Follow up PET remained clear except for piece that remained on Carotid artery. Our surgeon referred us to a vascular surgeon and he, along with our original surgeon took a 5 inch piece of his carotid out, replaced it with a piece of his femoral artery. Again, a six hour very delicate surgery. So far, PET and CT's are clean. Miracle! We owe everything to our two fantastic doctors. He still has throat pain, ear pain at times. He's getting stronger everyday and we continue to pray. We owe it all to quick interventions from our Doctors. Good luck and pray.

Scottiedog
Posts: 4
Joined: Apr 2009

I haven't been on the site for so long, noone out there has PDTC! I have very little info. on this type. I finally found your post and am so happy for your husbands outcome. Not having info. on your type of cancer can get very discouraging. Thanks for the post. Kary

ATC questions
Posts: 2
Joined: Oct 2011

Aloha aprils dad,

I got diagnosed with ATC. I took out my thyroid glands and started radiation and chemotherapy. I am concerned about how long I will live. Is your daughter doing better? How's her health. My wife is giving birth in 2 weeks and i want to live a long life with my family. I am 33 years old and do not want to die. I am very scared and concerned for my health. Please let me know how she's doing.

Mahalo,
Kimo

Defyinggoliath's picture
Defyinggoliath
Posts: 1
Joined: Sep 2010

Hello, Was wondering how you are doing at this time? I was diagnosed in December of 2012. I am a 48 year old male. Let me know what has been happening please? David

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

50 year old male doing ok , found my lump aug 2012 removed sept 15 2012 rad and chem nov dec 2012, passed the first round of scans ect going again next week, i have to give the gorly to god. i believe i will walk away, you

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

Writing this  down for the next one that hears atc , went for my second round of pictures today . Praise God  things look ok 8 months out ! Take my thyroid pill  calcium and vitamin d thats it. Lost weight during the 8 months 10% voice still not so good strong but raspy, still can not swallow everthing but a hell of a lot better then choking during treatment, some days have been hard with this bad boy hanging on your back but all you can do is go for the win  beat atc  See a different doctor may3, it was the head doc today. I have to say the people taking care of me  have been great !!

dkenglish
Posts: 3
Joined: Mar 2013

Hello, so glad I saw your post. My husband was diagnosed with ATC had total thyroid and tumor removed 2/6/13 surgeon said he got it all but the endo he sent us to told him he only had 4-5 months to live go home get your affairs in order and walked out of the room. We were devasted but didn't take it lying down.  He didn't even offer anything.  I immediatley started getting him to cancer centers went to MD in Texas (who were excellent) and Stephenson Cancer in OKC.  MD did ever scan there was to do in a body no cancer evidence in entire body but we couldn't stay at MD for treatments.  My question to you is what do your doctors say about this cancer.  Our surgeon assures us he got all the tumor but he is not the one treating the cancer. these doctors we are treating with in OKC just seem to think he will not survive this even though there is no evidence of no cancer and no invasion outside of the thyroid. 

He is currently taking radiation 29 treatments with 5 chemo adriamycin has 7 radiation left.  I am so glad your scans were clean your story just gave me more hope, that is what we are praying for his scans to be clean we just don't believe all these doctors.

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

May 9 2013  Praise god , Have tests and scans again may 22, Shot some baskets yesterday at the parkSmile Still some side affects to my head up the back of my neck, but gaining. lost weight and strengh but gaining.Starting to dream and make goals for a future again!!! THAT IS SO SWEET!!!!!! THANKS TO ALL

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

good evening  , I RECIEVED 35treatment , with what they say was 66 grey 7 rounds of chemo , They got it all also but they use the word border ,,,,, where the thyroid was attached to the wind pipe. one cell has to get loose.  I feel good , life has not slowed down, one thing after another !! I think i going to win now more then ever you? Knock cancer out of you mind to many things to do and think about . I will pray for you and your husband, any questions i can answer i will .

dkenglish
Posts: 3
Joined: Mar 2013

I am so glad to hear your story gives me more hope.  All these docs we treat with are so negative about this type cancer. I know there are longtime survivors out there just all the post I have read were several years ago.  Sounds like you have a good team of doctors working with you and sounds like you will be one of the ones that will beat this one.  My husband is really doing good hasn't lost any weight still able to eat just not meats it is the mental torment from the first endo we went to that has been so mentally challenging for him.  How long after your treatments did they wait to do scan.  The first told us 8 weeks I told them I wanted at 6 since they claim this is such a fast growing type.  This is his last week of radiation then the wait for scans. 

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

IT WAS 8 WEEKS . MY doctors ask me?  They tell me just do what i have been doing, believe me i am not getting any extra .  They keep telling me i am lucky to be alive, See my radiation doc may 3 , see the head doc again end of may, see the surgeon in about 3 more months . You are out on your own island with this i guess, got a port put in me when the chemo was almost done , i asked why?  I thought , doing so well with this someone would show more intrest . I did not lose any weight till after my treatment then 10% cant  gain it back yet. No news is good news they say, just live your life.  Like i said they do not know you are teaching them. They called dana farber and gave me their treatment minus the placebo tablet ,glory has to go to god. When i found the tumor come like overnight doubled in size in two weeks when they removed it, At the moment paying my bills and buying food are first its not funny but its the truth. My head doc tells me if I CAN GO 16 MORE MONTHS CLEAN I WILL BE IN THE CLEAR. I THINK keeping it out of your lungs is key with the way this grows , IDONT THINK  they can do much if it comes back maybe slow it.I am in the same spot you are just further down the road , how old is your husband and any other health issues?  I am going to win and so is your husband PS MY  voice is starting to show signs of clearing up and i can still do my 50 push ups and 50 sit ups g ood luck and god bless you both!!!!!!!!!!!!! 

dkenglish
Posts: 3
Joined: Mar 2013

I agree with you about being on your own on this one docs act like they really don't care.

 My husband is 55 has never been sick just went in for upper and lower scope dr just noticed lump while we were in his office.  His voice is hoarse his radiation doc said it would come back in a couple of weeks. then said something about the tumor guess he doesn't realize that the tumor was totally removed by another facility than the one we are doing radiation/chemo with. 

They don't even look at your charts some of the PA's don't even know what you are being treated for.

husband is still able to eat quite a lot just not meats hasn't lost any weight and did not get feeding tube.  My husband says if anybody cures him it will be God not the docs, I realize this is a type they don't see very much of anywhere.  I just know there are survivors out there from this and that is what they need to focus on especially with somebody that they say they can't find any cancer anywhere else, docs need to learn to fight the battle.

 

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

 Feeling good , seem to be winning what i was told was unbeatable praise god, the battle is not over but gaining!!!!!!!!!!!!!!!!!

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

Went to doc today,  read scans no cancer!!!!!!! see endo july 1 dont see head doc untill aug 1 at that time will be a year! Only GOD COULD PULL THIS OFF REALLY!!!!!!!!!!!!!!! BEAT ATC BEAT IT

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

11 months out , not taking anything for granted, but feeling good.THANKS TO ALL THAT HAVE FOUGHT, FIGHT AND BATTLE EVERYDAY!

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

Just want to thank everyone ! I WANT TO PRAISE GOD !!! We are on are way people , if not me to BEATING  ATC. I believe i will to REALLY!!!!!!!!!!!!

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

Want to praise GOD!First for being alive,second for believing GOD that I could survive and third all the wonderful things I now know !             all of your stories good and bad! Made me a better human being! THANKS

beat atc's picture
beat atc
Posts: 35
Joined: Mar 2013

Start my 23 month ! Feeling tired at end of day , but good . Good luck everyone and prayers !

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

Was just thinking about you earlier this week! Very best to you.

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