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tall cell papillary carcinoma

minniejan
Posts: 88
Joined: Dec 2010

Hello,

Thought I posted last night, but can't find my post. I know how this website can be as I am NED for a completely different cancer and am part of another discussion group.

Okay, I have just been diagnosed with tall cell papillary carcinoma, a more aggressive variant of papillary carcinoma. I searched on this discussion board to find out more information on it, and am having no luck. Has anyone been diagnosed with this form of thyroid cancer And if so, can you share your story with me?

MinnieJan

rcsieg
Posts: 6
Joined: Feb 2012

Hi - I was just diagnosed with tall cell papillary carcinoma as well. Just had my thyroid removed last week (along with some lymph nodes). Have endocrinologist appt. next week. My surgeon said I will need the radioactive iodine treatment. What is your situation?

minniejan
Posts: 88
Joined: Dec 2010

Hello,

I had surgery on 1/18. Received pathology report on 1/31 during a followup with the surgeon. Just waiting for my endocrinologist appointment on Friday to map out a plan. I too had lymph nodes, 3, removed. None had an indication of tumor spread although there was some indication it was "on the move" within the thyroid. My surgeon told me that RAI tends to be less effective on tall cell and tall cell is more aggressive and rare overall. But still indicated I would probably undergo the RAI therapy after doing on the low iodine diet. Will need more blood work and ultrasounds too. I do not have a staging, which I find odd after undergoing staging for UPSC uterine cancer just a year ago. These two cancers I am battling are totally unrelated. Where in the country are you being treated? There is little information online about this variation of papillary carcinoma.

Minniejan

rcsieg
Posts: 6
Joined: Feb 2012

I am on Long Island (New York). Where are you? I am still trying to find more info about it. I have my endo appointment next week and will see what my dr. says.

minniejan
Posts: 88
Joined: Dec 2010

Hello, I live in a suburb outside of Philadelphia, and am being treated at Hospital of the University of Pennsylvania. I am fortunate I do not have to go too far. Keep me posted please. I keep researching this but am not having too much success.

MinnieJan

csm2007
Posts: 25
Joined: Dec 2010

Hello,

Greetings, I can hopefully be a success story for you. I was 34 when DX in Dec 2010 with Hurthle Cell Carcinoma 4.5 cm 33 grams first in the left lobe, then during the second surgery in Jan 2011 to remove the other lobe Papillary Tall Cell Variant 1.1 cm 9 grams was found in the right side and had spread to the tissues and cervical(head/neck) nodes. They also found small but manageable nodules in my lungs, most likely from the Hurthle Cell. I was on the LID for just over two weeks then had 150 mci's of RAI on April 15th 2011. Currently I take 137/150 mcgs (alternating days) of Synthroid and Sorafenib (tumor suppressor.) Although it took many months to get my TG and TSH levels down, I am just over a year out from the last surgery and have no reoccurrence yet. So far, so good! I am treated here in Jacksonville, Florida by 21st Century Oncology / North Florida Endocrine, and have regular 8 week bloodwork to check my progress. If you have any questions I did not cover please feel free to message me. Best of luck to you in your cancer journey....

Williamryan
Posts: 27
Joined: Dec 2012

Like yourself, my Papillary Thyroid Cancer with TCV has also progressed to lymph nodes in my neck and chest.  I read about the tumor suppressor Sorafenib and was wondering what side effects you experienced with this drug and how long it took to effectively suppress your tumors.  Very skeptical about the side effects.  Going to Memorial Sloan-Kettering Cancer Center in NYC next week for another follow up consultation.  Since the initial scans in March 2012 and comparing to the recent scans in December 2012, the tumors have almost doubled in size, although no spreading has been detected.  Please let me know about your situation with Sorafenib.  Thanks much!

ckang690
Posts: 2
Joined: Jan 2013

i need your help locating doctors or getting your experience.

my daughter is 11 years old, she got dignosed two months ago , and she had total thyroidectomy and radion therapy.

the doctors told me that all i have to do is waiting for few months to find out the radiation treatment will kill the cancer cell.

according to my research, TCV is a hard to fix. when i talked to my doctors i had the impression that the doctors were not sure how to treat her.

also, to be identified as TCV, many researchers said different theories.  some says 30% and the other says 50% the cells. 

my doc told me that my daughter my daughter has small area is TCV.  how do you define this? my daughter has two types of cancer?

please help me, GOD be with you all the time. 

 

rcsieg
Posts: 6
Joined: Feb 2012

just did the rai pill yesterday. so far no side effects. wondering how u r making out?

utahgirl1970
Posts: 2
Joined: Aug 2012

How did your visit with endocrinologist go? My appt is in 6 weeks, so I'm interested in knowing what to expect. i was also told by my surgeon that I would need the radioiodine treatment, but as I read some things on line, I see that Tall Cell Cancer is not too receptive to it....Please let me know how you are doing :)

rydleigh
Posts: 1
Joined: Feb 2012

Hi, I'm also looking for someone who is dealing with the diagnosis of tall cell variant papillary thyroid cancer. I had a TT on Feb 1/12 and got the pathology report from my GP on Wed. It showed that I have a tumour on both the right and left lobes. The right tumour is 1 cm and extrathyroid extension is present. The cytomorphology discription is classical, tall cell and oncocytic. The left nodule is 0.7 cm with focal extrathyroidal extension and cytomorphology states tall cell variant. I've been searching for more info as well and have only managed to find stats that are really depressing. I'm sorry to see that you are also dealing with a similar situation. It's sometimes comforting to know you are not alone. I have an appointment on Feb 16 with my oncologist to go over the report and decide on the next step. I will post any information that I find helpful.
Take care,
Rydleigh

ILDenlou58
Posts: 8
Joined: Oct 2012

hi i also have tall cell thyrod cancer i have been tol i131 doesnt rfesond very good to iti had i131 in aug 1st 2012 waiting to find out what my blood test says it has to get to 0 before i am in remission i am very tired latly i want this to be over cancer stinks please write and tell me how your doing Happy thankgiving to you and your family

ILDenlou58
Posts: 8
Joined: Oct 2012

hi i also have tall cell thyrod cancer i have been tol i131 doesnt rfesond very good to iti had i131 in aug 1st 2012 waiting to find out what my blood test says it has to get to 0 before i am in remission i am very tired latly i want this to be over cancer stinks please write and tell me how your doing Happy thankgiving to you and your family

Yangela's picture
Yangela
Posts: 1
Joined: Feb 2012

I was diagnosed with the tall cell variant of papillary thyroid cancer February of 2011. Complete thyroidectomy in March where they also took out 12 lymph nodes and the cancer had spread to 6 out of the 12. So far I have had a RAI treatment and a follow up full neck scan and no news is good news. Currently, on the LID for another full body scan. My doctor is just keeping a better eye on things it seems and it did take about 7 months to have my levels at a place where he wanted them, that level is 200 mcg's of synthroid 6 days a week and 400 mcg's one day a week.

Lspil4
Posts: 3
Joined: Jun 2012

Im also from LI. Was diagnosed with pap Thyca 8 months ago and decided to go to MSK jus for second opinion and got thrown for a loop. They said tall cell was present in 2/7 metastatic nodes with a total of 38 nodes taken. Can anyone share how they are doing , what follow ups are like. This is a little scary. I'm. 37 year old female with 2 young children. Thank I in advance and hope everyone is doing well

vanderbilt
Posts: 4
Joined: Jul 2012

There are a couple of good books about thyroid cancer. (Both cited on my website, www.myrnacatharsis.com Kenneth Ain (from the University of Kentucky) also has a very informative website.

So far, for me, in spite of the delay of Vanderbilt, I seem to be lucky.

What perplexes me is how my enlarged thyroid was brushed aside by my physician for over five months. I wonder if it is "special" treatment for people who work at Vanderbilt and have their health care through vanderbilt. I was even referred by another physician.

In addition, during my interactions with Vanderbilt Med Center aobut my thyroid cancer, I was *not* referred to anyone listed as a specialist. Again, it makes me wonder if Vanderbilt employees are treated differently. Here, the problem is not one of health insurance. I have health insurance but it is through Vanderbilt.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Myrna,

I just read your web site, in some ways, my experience was similar to yours.

Driving home one night in Sept 2010 I was rubbing my neck and found a lump sort of beside my adams apple. I immeadiately called my Primary Care and saw her very shortly. She palpated the lump told me that it was a lymph node and that lymph nodes will swell up for various reasons and not to be worried. She thought it best to wait and see and that most likely it would go down on its own in a month or two. In a moment of clairvoyance, I asked if it could be thyroid related, she palpated my thyroid, found it to be normal and said it was very unlikely.

Come the begining of November, it was still there and I asked for another appt only to find my doctor would be away for some weeks and I could go to the doctor who was covering for her. I made the appt and also called my old Primary Care who I had been forces to leave for insurance reasons about three years previously to see if he would take me back and also how quickly he could see me if he did, he had changed practices by then. He took me back and was able to see me almost as quickly as I would have been seen otherwise. He also palpated the lump and said that since there hadn't been any discernable change in 2 months I should see a general surgeon. I saw the general surgeon in early Dec and he also palpated and said, "It doesn't feel like any Lymphoma to me." I think this comment by him is telling in that each of the doctors I had seen up to that point were probably looking for Lymphoma and not finding it. He then suggested a fine needle aspiration but, in a moment of clairvoyance for him, decided it would be better for me to go to a head and neck surgeon instead. The end of Dec I saw the head and neck surgeon who scheduled a lymphadenectomy for 1/18/11. He took it out, put it under a microscope and found papillary thyroid cancer cells. To speed things up, I had a total thyroidectomy and right side neck disection {50+ nodes} on 2/8/11, RAI on 4/14/11 and good follow ups since.

Before the neck surgeon performed the surgery, he had a sonogram done to see what it could find. Since the four cancer foci found were all under 2.6 mm, it found nothing, a sonogram can't resolve things smaller than 5 mm.

At the time, I was angry about my experience with the Primary Care doctor I saw in Sept 2010, but after what subsequently occurred, I don't see how she did anything wrong. If 100 patients exhibit with exactly the same symptoms as I, her diagnosis would probably be right 99 times. I just had the bad luck of being the 100th patient.

Alan

vanderbilt
Posts: 4
Joined: Jul 2012

Hi Alan

Thanks for your response. It was interesting and informative. While there are some similarities – we were both angry, for example -- your experience is quite different than mine. When alerted to your lump, your PCP saw you almost immediately. Your old doctor saw you fairly quickly also and then sent you to a surgeon. Within only 4 months, you had seen your PCP, had a follow up on her advice (since the lump did not go down) and had surgery scheduled. That was speedy!
My Vanderbilt University Medical Center PCP delayed for 5 and a half months after being notified by both myself and my gynecologist that I had an enlarged thyroid. Five and a half months of brushing aside my requests for an appointment.

Besides being angry when I found out that there was possibly a serious problem, I lost trust in VUMC. I had had somewhat disturbing experiences in the past with VUMC. It is scary to feel that you cannot trust your physician.

Myrna

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Myrna,

I agree 100%, he should have seen you when you asked. I just wonder if he may, like my original PCP, have thought the chances were very good there was nothing to worry about and you should "wait and see". If this were the case, he should have made it clear to you that is what he was thinking.

Yes, I would've dropped this guy too, maybe even faster than you did.

Alan

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi all,

I think I should explain further my reasons for switching PCPs when I did. The PCP I saw on 9/2010 isn't a full time patient seeing doctor. She's a member of the faculty of a medical school that has set up a practice so that faculty members can do clinical work one day a week. The thought was, if a patient had an emergency problem, he or she could see one of the other participating faculty members ASAP. I originally chose her because she specializes in diabetes which runs in my fathers family and because my blood sugar numbers have always been border line. At the time, I thought this one day a week business wouldn't be a problem, probably because I've always been healthy and rather blithely expected the trend to continue. But after the lump showed up, I didn't like the thought of hopping from one doctor to another having to explain from the beginning and possibly pursuing different courses depending on which doctor I saw. {Not to mention having a doctor reading another doctor's notes and possibly misunderstanding the details implied or not implied therein.} I had received a letter from my old PCP when he switched practices about a year before, so I guessed he would likely take me back if I asked and he did.

Sorry to be so long winded again, but I thought a better explanation of why I chose to switch when I did was in order.

I think the morale to Myrna's and my story is, if you aren't confident in your doctor, then find a new one as soon as possible. In Myrna's case, the lack of confidence was well founded. In my case, maybe not so much, but I still had what seem like good reasons to me.

Alan

utahgirl1970
Posts: 2
Joined: Aug 2012

I'm new here, and am recovering from a total front compartment thyroidectormy with partial left side lateral node dissection. While in the surgery, the doctor found my vocal cord was wrapped around a tumor and had to peel back the vocal cords to reach the tumor, thus i am experiencing some paralzying of the vocal cords which I was told will take time to go away, which is fine but then was told the tumor showed Tall Cell Cancer which has freaked me out a little...However, I wish to talk about doctors....For years I had trouble swallowing and my primary did absolutely nothing. I then had a cough that lasted almost 4 months, again nothing. One day, a few weeks after coming back from vacation, I noticed a swelling in my neck area above my clavicle, closer to my throat. I called my NEW primary doctor and demanded to see an MD - not a P.A., not a resident, an MD!! My doctor was not in so I had an emergency visit with the older head of the practice - I thank my lucky stars because it was he that ordered a sonogram of the area and thus put me on the long road i am following today - a road to life. Turned out I had a node that was laying against my carotid and jugular. I was put in for a CT with contrast and a petscan and everyone (doctors/nurses) started getting panicky around me, no one would tell me what was going in - not a good situation. AFter the Petscan I went to my local oncologist who suggested I see a local ENT doctor (I only knew his reputation as an allergy doctor!!) for a needle biopsy. I told my oncologist if I did that I would bleed out and die on the table and DEMANDED he give me the name of an ENT surgeon who was qualified to do surgery without killing me! I ended up at Sloan, with chief ENT performing surgery. I still have a long way to go however, if I had listened to all the primary doctors and even my local oncologist (who told me, oh, even if there is a malignancy in there it is slow growing - you can wait, and then to be told by my Sloan surgeon that I had one month before I probably would have lost my ability to speak (and this is not even taking into consideration the Tall Cell Cancer which I will see an endocrinologist about in 6 weeks)...kind of blows my mind...That initial swelling in my neck was only there a short time - my other primary probably would have said, oh, you have an infection, here's some antibiotics, the swelling would have gone down, which it did anyway, and my cancer would have probably metastisized through my whole body. DON'T LISTEN TO DOCTORS IF YOU HAVE ANY "FEELING" THAT SOMETHING IS NOT RIGHT!!! LISTEN TO YOUR BODY AND JUST KEEP GOING TO DOCTORS UNTIL YOU FIND SOMEONE WHO WILL LISTEN - IT MIGHT SAVE YOUR LIFE LIKE IT DID ME...

david_nwpa's picture
david_nwpa
Posts: 1
Joined: Apr 2012

Minniejan, I too have the Tall Cell Variant of Papillary Thyroid Cancer (TCV). I was diagnosed with thyroid cancer in July, 2008. I had a total thyroidectomy in September 2008. At that time, I had a total of 6 lymph nodes removed during the biopsy and another 6 mediastinal lymph nodes removed in the surgery, combined with a 2.5 cm tumor removed from my thyroid bed. Six weeks after the surgery, I had RAI at 132 microcuries of I-131. A year later, more lymph nodes led to more RAI. My doctor has ordered PET scans and indicated in my records that my cancer is not RAI uptaking. In October 2010, after a summer in which all seemed to be going better, I was diagnosed with a recurrence. A second TT surgery came in December 2010 at which point the surgeon removed a 3.5 cm tumor from my thyroid bed, and 9 lymph nodes, many from the mediastinum. All 9 lymph nodes and the tumor were TCV and all with extrathyroidal extension. My ENT surgeon in Cleveland told me not to worry, and that based on my age, I would probably be cured. Along comes January, 2012, and my local endocrinologist discovered 2 more lymph nodes on ultrasound. I have my 4th WBS coming in June. None of the research I have investigated indicate anything about a cure. Instead it all points to poorer prognosis and a higher mortality rate. I would check with your endocrinologist about your particular case. Good luck, and stay alive! You can do it!

ILDenlou58
Posts: 8
Joined: Oct 2012

hi i was told i have tall cell thyroid cancer went for 5 hour surgery caner was 5mm 1mm from the thyroid margin had i131 6 figer turned blue tongue feel like its burnt bubbles on it taste bud lumps all over the place can u tell me how your cancer did cant find too much on tall cell thank u denlou

ILDenlou58
Posts: 8
Joined: Oct 2012

hi i was told i had thyroid cancer in march 29 2012 had 22 needle biosy in neck had radal surgery in june 4 took out 12 lymph nodes saliva gland 1parthyroid whole thyroid gland came back tall cell had i131 aug 4th waiting to see if medicine worked i been told that i131 doesnt always kill tall cell what has been your story with tall cell can you please write back denlou

Williamryan
Posts: 27
Joined: Dec 2012

I had my thyroid removed in 2008 with RI 131 followup treatment.  24 lymph nodes were removed from my neck and 12 were positive for papillary cancer.  For the next 4 years, my annual body scan was negative although in March 2012, my body scan was again negative but my thyrogobulin antibodies were very high.  Had a PET scan and revealed four "hot" spots (2 in neck and 2 in chest).  Then had CT scan with resonation to identify sizes, then had fine needle biopsy done on them and results showed TCV.  Papillary thyroid cancer with TCV is resistant to the typical RI 131 treatment as well as chemotherapy.  Because of the unique location of the cancer, radiation is not warranted.  My ENT and Endocronologist conferred with John Hopkins and their recommendation was not to do anything at this time, just monitor the growth through bi-annual PET and CT scans.  John Hopkins stated that Memorial Sloan-Kettering Cancer Center in NYC is conducting research and clinical trials with TCV.  Upon my initial consultation with Dr. Alan Ho (MSKCC) I did not qualify for the clinical trial because my TCV had not progressed enough.  Since then, quarterly blood work was done to monitor the thyrogobulin antibodies, as this can be an indicator for increased activity.  My PET scan for December 2012 revealed some growth, but no spreading.  Although my followup CT scan revealed significant growth, ranging anywhere from 35% to 80% as compared to the CT scan done in April 2012.  In May 2012, I have consulted with a thoracic oncologist surgeon and stated that the cancerous lymph nodes in my chest are too small for surgery at that time, stating that the surgery is quite invasive. 

Initially my ENT felt that surgery on my neck is not warranted since one of the two lymph nodes has attached itself to the scare tissue on my left vocal cord nerve and there may be serious damage as well as increased scare tissue.  Although since my most recent PET and CT scans showing significant growth, my ENT is considering surgery. 

I do have a follow up appointment with Dr. Alan Ho in January for further consultation and recommendations.  Not sure if I will qualify for the clinical trial, but more importantly I need more guidance.  The feedback I receive will determine if I pursue neck and thoracic surgery.  I will be meeting with my thoracic surgeon in February, since the two cancerous lymph nodes in my chest (one at the bottom of my para-trachea and the other is nestled between my right lung and trachea).  These are the two largest, measuring 2 1/4" x 1 3/8" and 1 3/8" x 1 1/8".  I also had my initial biopsy redone to look for bRAF antibodies and mutations.  This is an important component of TCV.  My results came back positive for bRAF.  Just another piece of info that I am taking with me to MSKCC for further evaluation.

TCV does metastisize to the lungs in time.  I have had difficulty finding information regarding this situation and finding that this type of cancer has just recently been given attention via clinical trials and articles.  I have several articles dating back to 2008 regarding this cancer, although research lacks solid prognosis and treatment.  There are two viable resources that have dedicated themselves in exploring prognosis, treatment, and setting more appropriate guidelines in diagnosing TCV.  There have been very little cases diagnosed with TCV although many articles have stated that there may have been numerous patients who have not been properly diagnosed with the TCV criteria. 

I hope my situation has been helpful and insightful to you, although like you and many others with TCV there is a lack of concrete information regarding treatment and prognosis.  The validity and reliability of such information should be taken with a grain of salt, since this cancer is very unique and the diagnosis of patients have been increasing in the past 4 years.  If anyone who reads my story has any information, suggestions, etc., please feel free to respond.

vanderbilt
Posts: 4
Joined: Jul 2012

 

 

 

vanderbilt
Posts: 4
Joined: Jul 2012

Thanks much for your post! I am sorry to hear about your situation.  I've also found that there is not a lot of information about TCV.  In fact, I had not previously read that "Papillary thyroid cancer with TCV is resistant to the typical RI 131 treatment as well as chemotherapy."  I'm trying to compile a list of references on my website, www.myrnacatharsis.com to share any that might be informative to others.  Might you have some suggestions for further references?  They would be appreciated.    All best wishes, Myrna

 

 

Williamryan
Posts: 27
Joined: Dec 2012

Myrna - Like yourself, I have had difficulty finding resources.  Some of the medical / hospital resources that have some information regarding TCV that I have visited are:  John Hopkins University, MD Anderson and google searches.  I have learned that the bRAF antibodies with V600E mutation and thyroglobulin antibodies are important variables regarding the short and long term prognosis of TCV.  If you plug in "bRAF antibodies" in a search engine, there will be multiple resources.  I will visit the website you mentioned.  Keep in touch.  Williamryan.

livelifetothefullest
Posts: 1
Joined: Jan 2013

Hi, 

I am new here and just had my first (6 month) post op papillary cancer ultrasound on 12/31/12 which was "suspicious and of concern."  I subsequently had the biopsy of a 9mm x 9mm enlarged lymph node in the thyroid bed where my previous papillary nodule 8mmx 8mm resided.  I had a complete TT with excision of 11  central lymph nodes back in June 2012. Only 1  node was poistive. Because I have Hashimotos and my antibodies for thyroglobulin were so high, my thyroglobulin markers were deemed inaccurate. Carole Spencer at USC does do special lab work where they separate the autoimmune antibodies from the rest but we were waiting to follow a trend. I also get the Tg and antiTg (if I have this right) sent to Quest.

 The biopsy last week was done at HUP in Phila (as I live across the bridge in a jersey suburb).  2 pathologists and the biopsy doc all huddled behind the curtain to read my cells. After a very long wait, the Biopsy Doc said, "All looks good but I'm going to call in the Chief of Path first but I think it's good."  Chief of Path. looks over my cells and the word is "no Cancer but your cells are interesting."  2 days later my Endo gets the final path report and calls to say the hospital called him, "there is cancer." He later mentioned tall Cell variant. I do not hav eth path report. Plan to get it Tuesday as my Endo is away. My Endo told me to schedule surgery.  The first appt. I could get for an Office Visit is first week in Feb. which I am trying to plead to move up.  

 

I am scared to death about the tall cell finding-no little other than the scary stuff posted on-line and here. I am 53 was staged at 3 before this finding.  What is in store for us with Tall Cell Variant Pap. Cancer?  I saw another person here  that posted is going to HUP.  I am sorry others have to deal with this as well. 

tu9122
Posts: 2
Joined: Feb 2013

I just had surgery on Jan 22nd. I have had several lymph nodes removed, and only the left side of the thyroid removed. The cancer killed the nerve to one side of my vocal chords. The Dr. did not remove the right side, as not to leave me with further damage. The cancer was on the left side. I have a follow up on Feb 21 and 22 with an I123 uptake.Three to four weeks later I will have six weeks of radiation. The cancer was identified as Tall Cell Variant as well. The CT also found tiny noduled in the right lung, too small to treat at this time.

Well, it has been a busy four months. Following surgery I went onto a low Iodine diet for several weeks.Followed by a nuclear iodine capsule to try to kill the right side of the thyroid. Followed by seven weeks of radiation. I just went to Boston for a follow up. A group of three masses on the right side still very evident through an ultrasound. I wasn't expecting this. During radiation, I lost my voice for three weeks. I just got it back. My team of Doctors are meeting to see what is next.

Annie25
Posts: 1
Joined: Apr 2013

I found a lump on the side of my throat last fall, had an ultrasound, which found several lumps in and about my thyroid.  They were biopsied and I was diagnosed with papillary.  The surgery was started in February and my surgeon quickly ran into problems.  The cancer had spread all over and after removing a lot of lymph nodes on the left side of my neck and part of my left jugular vein...and the entire thyroid gland, he ended up sending me to a specialist at a different hospital.  A day later I was back in surgery, where I lost the nerve to my right vocal cord and a lot more lymph nodes, but they managed to save my larynx and avoided doing any dissection of the espophogus or windpipe, and when I came around I was told it was TSV.  After another visit to the hospital for haywire calcium levels I was finally give the radioactive iodine.  The scan following the ioidine showed I still had uptake and the general consensus fom the oncologists now is external radiation for 7 weeks.  I am emotionally and physically exhausted from all this and wonder if it is ever really going to end??  It seems like every time there is light at the end of the tunnel the doctors come back with something else.  So far there hasnt been any spreading outside the neck area....but there wasn't a lot in the neck area that wasn't affected :( I suppose I am not even sure what I amasking, I have just never been so tired and emotionally wrung out in my life as I have in the past 6 weeks.  TY

tu9122
Posts: 2
Joined: Feb 2013

It took me a long time to get my energy back. I hope you are starting to get some. This does seem never ending to me as well.

Williamryan
Posts: 27
Joined: Dec 2012

Annie,

Has your doctors biopsied the lymph nodes for Tall Cell Variant (TCV) and bRAF mutation?  This would be very important for further diagnosis and treatment.  If your thyroid and lymph nodes that were removed DID reveal that TCV and bRAF mutation (positive) is present, this will take you down a completely different path in terms of treatment options.  Thyroid cancer that is TCV and bRAF mutation positive, this cancer is resistant to the typical RI-131 treatment.  Therefore, there are very limited treatment options as there are several ongoing clinical trials.  In my case where the thyroid cancer originally spread to 12 lymph nodes in my neck, the doctors did not biopsy for TCV or bRAF.  After 3 years of good annual body scans, year 4's body scan (with test dose of RI-131) were negative although my thyrogobolin antibodies were elevated.  Hence, a PET scan was done and showed that the thyroid cancer had spread to 6 lymph nodes (3 in my neck and 3 in my chest) as well as a nodule in my right lung.  After further biopsies of those lymph nodes, they were diagnosed with TCV and bRAF positive mutuation.  I had the 3 in my neck removed, severly damaging the left vocal cord nerve.  The 3 in my chest cannot be surgically removed because of anticipated complications.  Therefore, the only treatments available is in the form of chemo pills (Zelboraf and Nexavar), but with limited effectiveness.  I will be starting Nexavar within the next 2 weeks.  Google this information to learn more about differentiated thyroid cancer that is resistent to RI-131 treatment, Zelboraf and Nexavar.  External radiation really does not effect the long term prognosis.  This cancer needs to be treated systemically.  I hope this helps.  Let me know how things go.

Bill

Williamryan
Posts: 27
Joined: Dec 2012

Annie,

Has your doctors biopsied the lymph nodes for Tall Cell Variant (TCV) and bRAF mutation?  This would be very important for further diagnosis and treatment.  If your thyroid and lymph nodes that were removed DID reveal that TCV and bRAF mutation (positive) is present, this will take you down a completely different path in terms of treatment options.  Thyroid cancer that is TCV and bRAF mutation positive, this cancer is resistant to the typical RI-131 treatment.  Therefore, there are very limited treatment options as there are several ongoing clinical trials.  In my case where the thyroid cancer originally spread to 12 lymph nodes in my neck, the doctors did not biopsy for TCV or bRAF.  After 3 years of good annual body scans, year 4's body scan (with test dose of RI-131) were negative although my thyrogobolin antibodies were elevated.  Hence, a PET scan was done and showed that the thyroid cancer had spread to 6 lymph nodes (3 in my neck and 3 in my chest) as well as a nodule in my right lung.  After further biopsies of those lymph nodes, they were diagnosed with TCV and bRAF positive mutuation.  I had the 3 in my neck removed, severly damaging the left vocal cord nerve.  The 3 in my chest cannot be surgically removed because of anticipated complications.  Therefore, the only treatments available is in the form of chemo pills (Zelboraf and Nexavar), but with limited effectiveness.  I will be starting Nexavar within the next 2 weeks.  Google this information to learn more about differentiated thyroid cancer that is resistent to RI-131 treatment, Zelboraf and Nexavar.  External radiation really does not effect the long term prognosis.  This cancer needs to be treated systemically.  I hope this helps.  Let me know how things go.

Bill

ILDenlou58
Posts: 8
Joined: Oct 2012

Hi My name is denise i have tall cell thyroid cancer when they took biospys of lymph node one can back positive so i had a radacal 5 hour surgery 12 lymph nodes removed saliva gland 1 par thyroid whole thyroid came back tall cell .Since then i have had 40 biospys total my lymph nodes look like mat cancer in them.6 days in hosiptal with I 131 had to gothe long way no medicine for a month low idione diet. 17 months later going threw the diet with shots body scan and tumor marker blood test to see if im in remission . Can you tell me your story i am a little scared because they say its hard to kill .Denise

 

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