Recurrent thyroid cancer

ericarede said:

same story
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

Tamika30 said:

Hello
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?

bkane101 said:

This scares me to read your
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?

sunnyaz said:

Nodes and RAI
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

Gomesm2 said:

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.

o3g1i6e0 said:

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 said:

wow, lots to be going through
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

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

did you do any new posts