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Recurrent thyroid cancer

ericarede
Posts: 2
Joined: Oct 2011

I was diagnosed with differentiated pappilary thyroid cancer in June 2010, had a total thyroidectomy and subsequent I131 treatments. After a PET scan in Feb 2011 my oncologist gave me the "all clear". At a routine visit to my endocrinologist in September 2011 we discovered a new growth of 22mmx11mm in the thyroid bed and after CT of my neck I was informed that the cancer has spread quite extensively to the lymph nodes on the right of my neck.My oncologist thinks that the cancer was there all along but that it is refractory to the radioactive iodene. Is this possible, or did they miss the metastasis initially? I was referred to a surgeon who suggested bilateral block dissection of the neck. Second opinion = radical neck dissection right and inspection left. I am very worried that the cancer might be on the left as well - with the throidectomy the surgeon removed one lymphnode on the left of the tyhroid which was positive for pappilary cancer - they assured me that the radioactive iodene would sort it out -it obviously did not! I am scheduled to go for surgery 2 November 2011 and I am VERY scared. Is there someone out there that had the same problem? What was your treatment and how are you doing now?

amorriso
Posts: 186
Joined: Oct 2010

Our stories are almost identical. I had my TT in sept 2010, rai in nov, got an all clear and thought good. Did a follow up in Jan/Feb - was sent for a PET and ended up having bilateral neck dissection in March. They took 24 nodes from each side - only 7 on the right were positive. Another RAI in May - got another all clear in August. BUT just did my PET scan and its damm well back in another 2 nodes in the right side again! Looks like another surgery and then they may want to do external beam radiation. I too may be resistant to the radioiodine...and they did miss taking lymph nodes the first time around

I'm not scared - I am just plain mad.

If it showed in one node on your left definately have it inspected. Please get them to be very aggressive and check everything really carefully.

I am actually feeling very healthy and fit - so it really is bugging me that its back again.

I'll know more this week - email me if you wish

Take care
andrea

ericarede
Posts: 2
Joined: Oct 2011

Hi,
Thanks for your response. Good luck for the week. I get more and more upset as the time goes by. I am convinced that they could have prevented this if they were thorough with the first operation, but they always treat you as if your paranoid! I will definitely make sure that they do it properly this time - apparantly they will have a pathologist in theatre and will do frozen sections of the nodes, so hopefully they'll get it all

amorriso
Posts: 186
Joined: Oct 2010

Yep - that is exactly how I feel. If it was done right the first time I wouldnt be in this position now.
Good luck to you too

bkane101
Posts: 35
Joined: Apr 2011

This scares me to read your 2 stories. I had a TT in March 2011 and they removed 10 lymph nodes on the right side, 3 of them had cancer. Did the RAI in April and I received a call that my scan was clean. Went for follow up in June and the doctor said there was uptake on the left side and it wasn't clean. How nice of them! He said they won't do anything until April because it can take the RAI a year to do its thing. He said he's confident the cancer will be gone in April. He was also the same doctor that said not to worry that only 5% of the time are the tumors cancerous....I do not want to be going through all this again and have a big scar. I have a scar barely above an inc (don't ask me how he got that thyroid through it!) and it's almost invisible. I'm 38 and don't want a scar 1/2 way across my neck. :(

Also should ad that I am scheduled for an ultrasound early December. I'm not sure what an ultrasound can pick up now that the thyroid is gone? Can it pick up cancer in the lymphnodes?

JennJones415
Posts: 1
Joined: Nov 2011

Yes, an ultrasound can find cancer in lymphnodes. My surgeon had an ultrasound done on my entire neck (took almost an hour) and realized I had a lot of cancer lyphnodes. My first surgery (when he removed my thyroid) he also too 50 lymph nodes - 24 of which were cancerous. They went back a 2nd time on my left side. Before both surgeries, they did an ultrasound so they knew exactly what they were getting into. GOOD LUCK.

Tamika30
Posts: 9
Joined: Jul 2009

I hope all goes well with everyone.

I am currently having an issue with my levels being all over the place and having scattered nodes. But they are telling me that my nodes do not look to be cancerous and that they are small. I do not know if I should be worried or not. They just want to watch to see if they enlarge. Can they tell if the nodes are cancerous from the mri or the ultrasound?

alapah's picture
alapah
Posts: 262
Joined: Oct 2009

As i understand, they can't tell definitively with ultrasound but when i had a ultrasound last year there was an enlarged on they sort of put on watch. i remember my endocrinologist saying she was hopeful that it was not cancer because, though larger than normal, it was sort of thin and elongated. She said cancerous ones typically are more round and plump. She was right in this case - it went back to normal shortly thereafter. They can look at bloodflow and other characteristics with ultrasound as well, which together paint a picture but don't tell the whole story. I am not sure what an MRI can reveal when it comes to suspicious nodes.

Best of luck to you.

sunnyaz
Posts: 582
Joined: Oct 2010

So the way I understand it is this: RAI doesn't kill or uptake in existing nodes that have cancer so they can't be spotted on a WBS. The Ultrasound will show nodes that are suspicious and depending on the experience of the person using the US they can sometimes tell if they are cancerous. In other words a very trained and experienced doctor that specializes in looking for these types of nodes can tell when they are suspicious for cancer. The only way to be sure they are cancerous is to do a biopsy (Fine Needle Aspiration). I had cancerous nodes when I had my first round of RAI and they did not show up on the WBS because they did not take up the RAI. Only cells that take up RAI will show up on the scan. I didn't know at the time that I had them. It wasn't until I had a follow up US that they were seen by my Endocrinologist, biopsied and then I was scheduled for my third surgery and second RAI. My last scare was a few months ago. Some nodes popped up on the same side as my other nodes and where the cancer was on my thyroid and they were biopsied. All three suspicious nodes were negative for cancer. My Oncologist said they were reactive to the RAI and inflamed. They still are inflamed but I'm not worried because they tell me that they won't turn into cancer in the future. Once they are biopsied and found to be non-cancerous the likelihood of them becoming cancer is rare to none. I hope he is right.
Blessings,
Julie-SunnyAZ

amorriso
Posts: 186
Joined: Oct 2010

Your post just helped to reassure me that I may be in the clear... My last ultrasound and PET showed suspecious nodes. I had the surgery to remove them, and the reports just came back as negative!

Your info explains how this happens...I'm relieved - the doctors were thinking I would need radiation to take care of things.

Thanks

Andrea

Elvis4's picture
Elvis4
Posts: 1
Joined: Dec 2011

I had a thyroidectomy 10 years ago and have had low levels of antibodies ever since. The last couple of years the antibodies have been increasing noticeably. I have had ultrasounds once a year for the last several years and they are watching 3 very small growths in the thyroid bed, they have been too small to biopsy. It appears now that one of the growths is most likely a recurrence of thyroid cancer. Unfortunately, it is right behind my carotid artery. Tomorrow I am going to talk to the doctor about a treatment plan. I have been told that because the growth is behind my carotid artery it is riskier to surgically remove it than it is to leave it alone and wait for it to grow larger. Does anyone have any questions they think I should ask the doctor? Thanks.

Gomesm2
Posts: 3
Joined: Dec 2011

my daugter, which was 11yrs old when this all started and now is almost 13yrs old) had a thyroidectomy and found out that it is papillary thyroid cancer. A week later she had a ressection of cervical lymph nodes which were done back in late August/ early September. She has been complaining of pressure/pain in her neck and had a fine needle biopsy done today because her surgeon had confirmed that there were enlarged lymph nodes in her neck region again. Its only been 2 months since her RAI and I'm wondering if this is just too early to go further in treatment? I just don't know if there is a time frame to wait to see if the RAI takes to fight the cancer cells. I have all these questions for the doctor written out just in case we have bad news and also I'm trying to wait for her results but I have all this curiousity that I just want to know what others have to say and if they have been through this themselves.

alapah's picture
alapah
Posts: 262
Joined: Oct 2009

First of all, what a brave kid. I am sorry she's going through this at so young an age.

They say that RAI continues to do it's magic for up to six months. I suspect that docs will feel that 2 months is too short a time between doses so you may have to wait. One thing though is that RAI seems to have a hard time penetrating lymph nodes so lymph nodes with thyroid cancer are typically surgically removed. Depending upon the location and other factors, it may be possible forego surgery and instead use a procedure called alcohol ablation to kill cancerous cells in lymph nodes. This is done at Mayo Clinic and several other locations. There is a description of that here: http://www.mayoclinic.org/thyroid-cancer/treatment.html

I hope that might be an option for your daughter. Very best to you both.
eileen

sunnyaz
Posts: 582
Joined: Oct 2010

I had reactive nodes shortly after my last RAI treatment (February). All the biopsies (3) came back negative and the nodes are still enlarged today. The pressure/pain in her neck may be a normal reaction to the surgery and the RAI treatment. Sometimes it take a while for the swelling to go down and for tissue to return to normal. I have had three surgeries (last one a year ago) and I still have neck pain with a tight feeling in my throat. All in all, I think it is too soon to tell if the pain is from a recurrence or if she is reactive to the surgery and treatment.

I feel for you and your daughter. I have a 14 year old daughter and I can't imagine having to go through this with her. My daughter has a seizure disorder but has never had to have surgery. God Bless you both for what you have been through and are going through. I will keep you both in my prayers.

Blessings,
Julie-SunnyAZ

o3g1i6e0
Posts: 1
Joined: Feb 2012

Hi, I'm fairly new in this network. I was diagnosed with a papillary CA of the Thyroid in 1998 and had TT in Jan 1999. No RAI was done after that. In 2008 I saw another lump protruding from my neck and after several tests I was told it was a recurrent CA. Doctor wanted to do another operation on me before RAI treatment based on the size of the tumor but I was scared. Part of my fear was when I found out that my right vocal cord was paralyzed, probably from the previous operation. The tumor was on my left, so my only functioning vocal cord might get damaged from this 2nd operation.

Doctor then tried the RAI therapy (150mci) instead of operation. RAI was in 2009 Sept. Regular check ups, blood tests, ultrasound and whole body scans in 2010 showed no signs of CA. But my tumor was still growing.

Early 2011, I had difficulty breathing. Doctors treated me for cough, asthma, allergies which only minimized the symptoms. One pulmo doctor had me undergo a CT Scan. There we found my tumor not only pushing my trachea, it also invaded it. About 1cm of a smaller tumor was inside the trachea. An MRI also confirmed the diagnosis. And nodules, possibly metastatic was also detected in my lungs.

I was operated for the 2nd time last Dec 2011, Thank God for blessing my doctor with good hands for he was able to take care of my functioning vocal cord. And remove my tumor which was grown to 6cm while the one inside my trachea was about 1cm in size.

I just had another dose of RAI last week, about 200 mci and I am at home now recovering from post RAI symptoms. I had my whole body scan last Tuesday and would see my doctor about the results tomorrow. Pre-RAI whole body scan actually did not detect any signs of CA but that was the same results I got in 2010 yet the CA was still there (weird). So despite the negative findings doctors recommended RAI treatment to kill all cancer cells.

The nodules in my lungs were also not detected in the whole body scan. So after this RAI doctors would recheck if the nodules found in my lungs have disappeared. If not, then a radiation treatment might be advised.

Like you I am pissed at the recurrence of my cancer. I have 2 little kids (5 and 8 years old) and so I cannot be sick like this. So I am trying to keep a positive attitude and battle this cancer. I'm taking alternative treatments on top of the traditional medication, as well as meditation to control my emotions. For me, depression is the killer which feeds the cancer.

alapah's picture
alapah
Posts: 262
Joined: Oct 2009

but the thing about thyroid cancer is that it is not always responsive to RAI. RAI can work on some cells while others are, or become, resistant/no longer avid for iodine. when that is the case, no dose of RAi will be effective. for patients who are non iodine avid, treatments then tend to be towards external beam radiation, when appropriate, or chemotherapy drugs which can sometimes curb the growth of thyroid cancer cells.

i too lost use of one vocal cord at the time of my thyroidectomy because my tumor had encased the nerve. the surgeon had to cut it so that vocal cord no longer functions. since my tumor had also been unencapsulated and adhered to my trachea i was told by five different radiation oncologists that i should go through 60 rounds of external beam radiation because they have found that RAI has a poor record for reaching and killing cells within the cartilage of the trachea (it also has a tough time effectively attacking nodules in the lungs for some reason). they felt early aggressive treatment of my trachea and surrounding tissue was key to lessening my chances of a recurrance.

i had RAI in Sept of 2009 and went into radiation treatments in October. my neck has been clear but i have nodules in my lungs. we know this not because of RAI - my scans using RAI showed nothing at all but because i had rising thyroglobulin levels we know cells were lurking somewhere. a CT/PET scan showed the nodules in my lungs. for some people, growth of these is nearly nil or so slow that they are just monitored closely for years. unfortunately for me, my nodules are overachievers and i have been on a daily chemotherapy regiment for about four months, hoping to slow the growth. with persistent disease, you may want to seek out thyroid cancer specialists who deal with these sorts of complications, at least for a few second opinions. it can be so helpful to get varied insights and suggestions.
very best to you.
eileen

LizP
Posts: 17
Joined: Aug 2010

I just had a diagnostic RAI treatment last week which was unsuccessful... no uptake. My first RAI treatment was post TT in Sept of 2010. It was a high dosage to treat stage 3 hurthle cell carcinoma.

My annual tg blood tests and ultrasounds were postponed due to the shortage of thyrogen.
My Dr.s hoped to do the annual tests without going off Synthroid and going hypothyroid. We waited until Dec. and thyrogen was still on backorder.

I had my check up & ultrasounds in early December. The ultrasound showed a new growth in my thyroid bed. I had to go off the Synthroid for 7 weeks and the followed the Low Iodine Diet for 3 weeks to prepare for the RAI. Good news/bad news... RAI is no longer an effective way to diagnose my condition or treat recurrent thyroid cancer.

Next step now is a diagnostic PETscan. Preparation for the test is much easier. 24 hours prior follow a low carb diet, just water the 6 hours before.

Laurapreston82
Posts: 1
Joined: Feb 2015

Hi elaine

just wondering how you are getting on. My mum is 59 she had her thyroid removed we thought cancer was gone bur recently found out she has nodules in her lungs and a lesion in her shoulder

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