Recurrence?

It has been about 6 months since my TT and 4 months since my RAI treatment for Papillary Thyroid cancer. We have been struggling with the right dose of Synthroid...increasing it little by little. Lots of fatigue, etc, etc (and everything else that you all know goes along with all of this). I have been trying my best through this whole experience to have positive thinking that they "got it all" and that it won't come back; especially so my husband and family won't worry.
When they removed my thyroid they also removed approximately 50 lymph nodes (about half had cancer). That sure is a lot of lymph nodes, but they said the 150 dose of RAI would kill anything that was left over. Hopefully.
I recently felt a small lump on the left side of my neck. My doctor had my go in for an ultrasound today. They said that no nodule was seen in my thyroid bed, which of course is good. But they did see one small lymph node that was "calcified" and "suspicious" for papillary cancer.
My endo, who is wonderful, hasn't had the chance to really fill me in yet, but do any of you know if I should worry about this?
My thinking is that it shouldn't be there. I'm worried that it has shown up after the RAI and therefore won't be affected by it.
I am of course worried that I have to have surgery again, go hypo again, go on the LID again, have RAI again, feel like crap again and struggle with regaining my life again slowly day by agonizing day.
Is it normal to have left over cancerous lymph nodes for a while and then they mysteriously disappear months after RAI? Or is it not normal and I should worry?

Has anyone out there had recurrences? Have you had more that one dose of RAI? more than one surgery?

Thanks for you replies. Hope you all are hanging in there.

KatKc

This is my first time dealing with this cancer, but I know we all worry about it, just as you are, So all I can say is keep the positive attitude and smile each day, and remember  that there are much worse types of cancers out there, and we can get through this with all the support on this site and our family and friends!. Many Prayers for you!!

 

katkc - I also had papillary (tall cell which is more resistant to treatment) with TT and all the stuff you mentioned that go along with the whole experience.  I had RAI 150 and months afterwards felt a lump that was checked by ultrasound.  I was told there wasn't a problem.  However, on a scan, there were some lymph glands that "sparked" and they are watching those to see if they were lit up by the uptake from the RAI or cells that were missed before.  Every doctor is different in his/her approach to solving this.  I have found that I am the one who pretty much needs to hound them for answers because charts get buried on the desks of busy doctors---every office seems understaffed and overworked and they don't stop and think "Oh, I haven't called Tara today!"  So, I make myself known to them.  **If you don't understand what you have been told (which happens to me after I leave the doctor's office when I have had time to reflect on what was said), then call and ask.  I've actually left a message for my doctor to return the call and I have a list of questions ready.  I can't wait 6-8 weeks to get another appointment and pay over $100 for 5 minutes of their time.  Time is important when dealing with cancer. I'll be thinking of you and checking to see what answers you were given.   Good luck!!

Hey there, it's Skylog.  Man that stinks.  I'm sorry I don't have any answers for you.  When you had your WBS did any nodes lite up?  Do you have a 6 month scan planned?  I would think they would probably have you do one to see if that area lites up.  If it does, you will probably have to do another RAI.  Hopefully if that does happen you can maybe do the Thyrogen shots so you don't have to go Hypo again.  As far as I know many people do have to have a second round of RAI.  Just try to remember that this is very treatable.  I know, I know, it is hard not to worry.  I shouldn't even say that, because I worry everyday.  I feel my neck at least 5 times a day, just woundering if it's gone.   I too have had a long struggle with my levels being adjusted.  It takes FOREVER!!!!!   I still crash at about 9 every night.  My husband must think I'm alot of fun.  Have you gained any weight?  I feel like such a fat pig right now, I have gained 30 pounds.  Now that it is  summer I am not excited for the old swim suit to come out YUCK!!!!!  Well, I guess that didn't really answer any of your questions, I just wanted you  to know that I care.  Take care hun- I am always here for a talk.  You can private reply me if you want

It's true because Skylog helped me with her upbeat attitude.  It just helps to know that someone else out there understands.  I have every dosage of Synthoid in my rx cabinet because I'm constantly
having my dosage changed as my lab results show change.  I feel like a
pharmacist!  I'm optimistic, but I know with my age and the particular cell of cancer that I was diagnosed ....that it's going to be a long battle.  I'm going to take it one scan or one treatment at a time.  God is good.  I will just handle what is thrown my way.

Thank you all for your responses. I want to respond to each of you individually, but I will just do it in one email;) But I have to say, Skylog, we seem to always be living parallel lives. I so appreciate your support through all of this. Yes, I feel like a fat blob. I can't believe how this can change you - in so many ways. My jeans don't fit, I can't even imagine summer clothes...in fact thinking about it makes my heart race. ugh. As far as crashing at 9:00...that's just like me. My poor husband. We celebrate if I stay up until 10:00. Interested point about the WBS...no, nothing lit up except my thyroid bed which they said was to be expected. No lymph nodes. I'll ask my doctor about that. And Tara, I totally agree about bugging the doctors. I am lucky because I work up at the hospital so my endo just encourages me to email her when I have questions. She usually gets back to me within a couple hours. She even has paged me before to update me on things and I am able to stop by her office if I need to . I know I am lucky. She is awesome. But, she is still a doctor and I don't know if she realizes that I am here waiting for her to give me the final result and her final decision on what we are going to do. It's just so hard not to know. And thankyou to georgetwo...I appreciate your response and your kind words. I will be thinking about you all. Katkc ps. How is everything else with you Skylog?? are you having any other symptoms? how much medication are you on?

I am sorry to say but sometimes it does take more than one treatment.  My one year scan showed a spot that they thought was a tumor and so I got to go thru with a second dose.  First one was 182 and the second was 193 but I am a large man and yes getting larger.  It was tough but you get through it.    I was told that about 20% go through a second treatment.  Good luck with whatever happens.  And I want to add my thanks to everyone as well.  It is stranegly comforting to know other people go through the same things.  The nine oclock bedtime is so hard, but if I try to watch a show that starts at nine I am usually asleep before it ends.  And the weight gain, I don't even think about getting into a swim suit.  There would be a report of a beached whale and we are 100 miles away from the ocean.  But I was given a different prospective today.  My son and his wife and 3 grandkids all live in Windsor Colorado where the tornado hit and they are all OK.  Some of their neighbors lost everything and my grandsons preschool was destroyed, but no injuries.  Thank God.  Makes me forget my own troubles and realize many people are going through many different struggles in their lives.  I have been given unbelievable support from so many people, I can only say I am blessed.  Chin up and belly in and keep smiling.  It makes people think you are crazy and that is fun.  Mike

 

On 5/22/2008 mjseyb wrote:

I am sorry to say but sometimes it does take more than one treatment.  My one year scan showed a spot that they thought was a tumor and so I got to go thru with a second dose.  First one was 182 and the second was 193 but I am a large man and yes getting larger.  It was tough but you get through it.    I was told that about 20% go through a second treatment.  Good luck with whatever happens.  And I want to add my thanks to everyone as well.  It is stranegly comforting to know other people go through the same things.  The nine oclock bedtime is so hard, but if I try to watch a show that starts at nine I am usually asleep before it ends.  And the weight gain, I don't even think about getting into a swim suit.  There would be a report of a beached whale and we are 100 miles away from the ocean.  But I was given a different prospective today.  My son and his wife and 3 grandkids all live in Windsor Colorado where the tornado hit and they are all OK.  Some of their neighbors lost everything and my grandsons preschool was destroyed, but no injuries.  Thank God.  Makes me forget my own troubles and realize many people are going through many different struggles in their lives.  I have been given unbelievable support from so many people, I can only say I am blessed.  Chin up and belly in and keep smiling.  It makes people think you are crazy and that is fun.  Mike

Thanks for the chuckle today, mjseyb!  (Not the part about the tornado!  I live in Kansas City and it seems like we are getting hit a LOT already this year---people losing everything they have). I'm thankful for another chance to appreciate my life.  God is good.

 

Hi YaYaTara!  I read your response to "Recurrence".  I noticed that you too have tall cell.  I just wanted to inform you that when I was initially diagnosed they picked up a abnormal lymph node on ultrasound and it was biopsied and they knew it was cancerous.  When I had my RAI and scans it did not light up or enhance to indicate it's presence which I understand can happen with tall cell.  A later ultrasound was able to pick it up and it was stable in size but we already knew it was cancer.  Since the RAI did not address it I went in for neck node dissection and there were two more, 3 of 28.  It is common for tall cell to show up in the neck nodes so even if the scan does not light up don't allow it to go too long without having a definite answer as to if it represents neck node mets or not.

I know what you're going thru.  I had a TT in Oct 05, with 12 lymph nodes removed.  Then I had surgery in July 07 to remove about 18 more, both times about half of which were cancerous.  I've had two does of RAI of over 200mc each, and now apparently cannot have more due to the danger of the RAI causing other cancers.  I just got finished with another set of scans, (I pretty much have to do the LID every 6 months), and things look good.  I guess I just figure what choice do we have?  If you have confidence in your doctor, you have to play the cards you're dealt.  Believe me, I dread the LID, and the scans, etc. but it's better than not keeping a close eye on things.  Best of luck.