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recurrent papillary thyroid cancer

laj
Posts: 1
Joined: Jul 2004

I developed papillary thyroid cancer in November of 1999. Since then, I have undergone 4 surgeries, 2 I131 treatments, 8 weeks of external radiation, and numerous CAT and PET scans. The cancer spread, due to lack of medical supervision and knowledge, to my right lung. This is rare for stage 4 papillary thyroid cancer. I began with 4 tumors and a handful of lymph nodes in my right lung. After radiation, I have 2 tumors remaining. I am due for another PET scan this month, and have been told that as long as they do not grow in size, and my synthroid is properly managed, I can live with the remaining cancer tissue in the lung. Has anyone else experienced anything similar? I would love to share more. Thanks, LAJ.

lismor
Posts: 15
Joined: Jul 2004

Isn't it funny how they think? The thought of leaving cancer inside you I'm sure is not very comforting. I did hear in another thyroid forum of something similar. This man though did not respond to the normal RAi so he looked for other options. He enrolled in one of those studies. I will look for it if you'd like. Don't take no for an answer from your drs. Theres always alternatives. Also I am kind of new to this forum. Can we post other links to websites on here because if we can I'll just give you the name of the other forum so you can talk to this man. Hang in there!

yoko118
Posts: 8
Joined: Dec 2003

Hi, laj I am a 57 yrs old woman, and I had total tyroidectomy in 1998. Then, it recurred in 2002. I had underwent two surgeries in a same year. In March, i had thoracotomy(lung) and onther was a neck desection(lymph nodes). During the time, I also had numerous Cat and Pet scans like you. I also had i131 treatment three times altogether.
The most difficult thing now is i have developed severe xerostomia after my neck XRT. In March, 2004, they found small nodules in my both lung and throat. I am going to take an another scan this week. My recent thyroglobulin was .9 which is good, but white blood cell count is low.

glowingkaren
Posts: 19
Joined: Dec 2004

Did they do a total thyroidectomy on the 1st surgery? That stinks that you had to keep going back. I had a total done in March of 95 & removal of 7 lymph nodes (4 were ca, the other just questionable). Followed with I-131. I have remained cancer free almost 10 yrs now. May I ask how old you are? I was 35 at time of surg. I knew I had a cyst or something in my neck for several yrs though before going back to a Dr. I never thought it would be ca. I will keep you in my prayers. I was in the hospital with a man across the hall (be4 they quarantined us), who was back for his 3 rx & it was also in his lungs & spine). He was older then,maybe 60's) but he is still ok now. ;)

44goldengirl
Posts: 5
Joined: Jan 2005

LAJ: I have desperately been searching for a case similar to mine and I think yours comes close. In 1998, I was diagnosed with both papillary and follicular thyroid (I also am in Stage 4). My thyroid gland was removed and I was given the follow-up I131 treatment to kill off the remaining tissue. In May 2001, my thyroglobulin was 6.6 and I was given another I131 treatment. Since 2001, my thyroglobulin continued to increase (it hovers in the 20s, 30s and 40s). Body scans show the thyroid cancer has metastasized to my lungs, with multiple lesions in both lungs (the largest lesion a year ago was 7 mm. Altogether, I have had 955 mCi (400 this year—200 in February and another 200 treatment in July) of radioactive iodine treatments but my thyroglobulin is still in the 30s.
My endocrinologist believes the cancer is growing faster than the I131 is killing it, thus the increase in radiation. Unfortunately, it appears this has not worked, so I have a consultation with him at the end of January. In the past, he has told me surgery is too risky. He said that external beam radiotherapy would be even riskier than surgery in that it beams in on a particular spot in an attempt to kill cancer. Since I have multiple spots, the damage to the lungs would be extreme. How much dosage of I131 have you had? What is your thyroglobulin level? How did you benefit from external radiation? I think my doctor is going to recommend lung surgery to remove the largest lesion.
I would love hearing back from you and others regarding this situation, especially prior to my doctor's appointment on January 31.

san09
Posts: 2
Joined: Mar 2013

Hello,

I hope things have improved for you.

I am concerned about my husband having had five recurrences. I know this is an old post, but I am wondering if have been able to find a solution.

 

miladyx
Posts: 85
Joined: May 2009

Thyroid cancer does your husband have? How old is he?

san09
Posts: 2
Joined: Mar 2013

Thank you for asking. My husband is in his early fifties and he has papillary thyroid cancer. He has been through 3 surgeries and 1 ethanol ablatin. Last week his Tg came up 15.5. We are in touch w/Mayo Clinic where he had his ethanol ablation. We still have to hear back. In the meanwhile I am looking at what other survivals have done....

michelle beddy
Posts: 8
Joined: Mar 2013

my partner is 56  he has papilliary   cancer  he is awaiting his 3rd operation for lymph nodes   this time  they have to go through his chest   to get to them in his neck  his tg  is 10    really worried this time as they said its a big operation    DOES ANY ONE NO THE NAME OF THIS OPP  OR AS ANY ONE HEARD OF ANY ONE HAVING THIS  SURGURY   THANKS

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hi Michelle,

When they take out the lymph nodes that lie in between your lungs, it's called a Mediastinal Lymph Node Dissection.

It sounds like you're describing getting at the lower neck nodes from the chest instead of the neck.  I can't find anything on the web that talks about it.

There are no guarantees, but these days even major surgery can be routine.  I was on the operating table for more than four hours and was home less than 24 hours after they wheeled me out of the operating room.

Hoping for the best,

Alan

michelle beddy
Posts: 8
Joined: Mar 2013

the surgeon sed this is a BIG OPP THIS TIME ALAN   AND WOULD BA A LONGER RECOVERY    HE SAID IT HASNT SPREAD    AND IS STILL IN THE THROAT BUT LOW DOWN  ITS LIKE HAVING A OPEN HEART SURGURY   BUT ON THE LYMPH NODES     HE SHOULD BE HAVING IT DONE IN APRIL  OR MAY   THIS IS HIS 3RD OPP ON THE LYMPH NODES NOW   SOOO SICK OF THIS WORRYING   WHEN ITS GOING TO END     ARE YOU OK NOW ALAN HOW MANY OPERATIONS HAVE YOU HAD   REGUARDS MICHELLE UK ENGLAND  

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hi Michelle,

I'm OK now.  I've had two surgeries.  One on 1/18/2011 to remove a lymph node in my neck to see why it was swollen and wouldn't go down.  That's when I was diagnosed with thyroid cancer.  Then a total thyroidectomy and neck dissection on 2/8/2011.

Alan

Williamryan
Posts: 27
Joined: Dec 2012

Michelle,

I have papillary thyroid cancer with tall cell variant (TCV) and bRAF mutation, which does not respond to the typical RA-131 treatment.  I have two large lymph nodes in my chest (one below the paratrachea and one between my trachea and right lung).  I have thoroughly explored surgery with two independent thoracic surgeons.  It is a major surgery and cannot guarantee that the de-bulking process will remove each lymph node in its entirely.  Since it has spread to my lymph system, it needs to be treated as a systemic disease if surgery is not possible.  Inother words, if I have these lymph nodes removed, there can be major complications, i.e. accute or chronic lymphedemia, issues of the lymph system being depleted of white blood cells, having a tube remain in your chest to continue to drain the lymph system, etc.  If I had this surgery and other lymph nodes become cancerous in the future, I don't know if I would want to have another thoracic surgery.  I just had two other lymph nodes removed from my neck and will have a PET scan to determine if all the cancer was taken with the lymph nodes as well as to determine how much more the two lymph nodes in my chest have grown over the past 4 months.  I have traveled to Memorial Sloan-Kettering Cancer Center in NYC several times trying to find a protocol treatment approach.  Unfortunately there is not protocol treatment approach, as this type of thyroid cancer is very unusual, especially if it has been diagnosed as TCV with bRAF mutation.  I am currently consulting an oncologist from UPMC Hillman Cancer Center in Pittsburgh.  There are some limited treatment options although with little satisfactory results.  The cancer will never go away, it can only be managed through chemo (oral pills), i.e. Selboraf/Vemurafenib, Nexavar/Sorafenib, Sunitinib/Sutent, or Selumetinib.  The latter is taken and absorbed into your body to make the thyroid cancer cells more receptive to the RI-131 treatment, but the results are mixed.  This particular approach can also be taken with Nexavar/Sorafenib, as clinical trials are showing that not one chemo approach is adequate, therefore they are combining some of the above mentioned chemo pills.  They are extremely expensive, but if you have good insurance it may defer some of your costs.  I have done extensive research on all the chemo pills mentioned as well as ongoing clinical trials.  Unfortunately, such trials are only in their respective Phase II and some are entering Phase III.  There are side effects to all the chemo approaches, some more toxic than others.  People like us are in a very precarious situation with this type of thyroid cancer.  I hope this helps.

Bill

michelle beddy
Posts: 8
Joined: Mar 2013

HI BILL    

SORRY DIDNT REALLY UNDERSTAND   MUCH OF THAT 

YER THE SURGEON SED IT IS  A BIG OPERATION   THIS TIME  THEY ARE IN HIS THROAT AND  HIGH CHEST   THE LYMPH NODES   HOPEFULLY THEY WILL GET IT ALL THIS TIME  AS THIS WILL BE HIS 4TH OPERATION   ALL IN ALL   THE SURGEON SEEMED   NOT TO BE WORRIED ABOUT   HIM HAVING THIS DONE   WE ARE IN THE UK BILL SO WE DONT PAY FOR MEDICAL BILLS   HOW ARE YOU DOING NOW   HOW LONG HAVE YOU HAD THIS   BEST CANCER TO HAVE  DISEASE   BILL    SO ALL THE DOCS SAY   BEST CANCER TO HAVE   

NEVER ENDING  WORRY CANCER I CALL IT     

miladyx
Posts: 85
Joined: May 2009

How long has it been since his initial diagnosis?

michelle beddy
Posts: 8
Joined: Mar 2013

hi san  he was diagnosed 2 yrs  ago  hes  waiting for his 3rd operation now   its never ending   it sends me  really mad worrying all the time   i know it wont make any difference  worrying  but i do   this opp will be   a bigger one     this time   hes already had 2 neck   cental and disection   then the cat scan picked this up     his   tg is 10 last time so  its not considerable high   

michelle   united kingdom

michelle beddy
Posts: 8
Joined: Mar 2013

hows your husband doing san 09   hope hes  doing well

Krystal78
Posts: 1
Joined: Jan 2014

In November 2011 I had surgery to remove the left side of my thyroid due to a lump on my neck.  After removal I found out it was papillary thyroid cancer. 3 weeks later I had the rest of my thyroid removed.  2 months later in Feb 2012 I underwent radioactive iodine (i131) therapy where a whole body scan was done and I was given a high dose of the i131 pill and had to be isolated from everyone, I guess this was called an ablasion!  It worked and no further cancer was discovered,  A year later in Feb 2013 I had another whole body scan done with a small dose of i131 and the results came back negative. I was placed on synthroid from the beginning and recently switched to armour thyroid because i felt synthroid wasnt working, with the arnour thyroid I have improved!  Well it's a year later and I am wondering if I should get another whole body scan done.  I dont' really feel that I need it and I dont want to go off my thyroid med to do it since im finally feeling better!  How have any of you kept up with follow up care?  I'm thinking neck ultrasounds and blood tests checking TSH and thyrogobulin levels should be fine to keep checking for reaccurence.  Any advice or input would be appreciated!

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hi Krystal,

I'm almost in the same position as you and that's what my doctors advise me to do.  Sonograms and blood work to monitor, that's it.

I would be hesitant to under go another RAI scan because each time you do it there's a very slight chance you may cause an additional cancer somewhere else.  I try to limit the amount of radiation I'm exposed to, X-Rays, CT scans, RAI scans, whatever.  That's the great thing about sonograms, they're just sound waves.

Alan

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