CancerCompass message board discussion started by katkc on 5/21/2008 http://www.cancercompass.com/message-board/message/all,24252,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 katkc Wed, 21 May 2008 00:00:00 GMT 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!!  georgetwo Wed, 21 May 2008 00:00:00 GMT 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!! YaYaTara Thu, 22 May 2008 00:00:00 GMT 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 skylog Thu, 22 May 2008 00:00:00 GMT 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 constantlyhaving my dosage changed as my lab results show change.  I feel like apharmacist!  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. YaYaTara Thu, 22 May 2008 00:00:00 GMT 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? katkc Thu, 22 May 2008 00:00:00 GMT 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 mjseyb Thu, 22 May 2008 00:00:00 GMT  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.  MikeThanks 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.   YaYaTara Sun, 25 May 2008 00:00:00 GMT 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. Leemg Tue, 27 May 2008 00:00:00 GMT 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. fabmombo Tue, 27 May 2008 00:00:00 GMT  On 5/27/2008 Leemg wrote: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.WOW, Leemg---I did not know any of the information you sent!  No doctor has really explained 'tall cell' to me.  What all have your doctors said about 'tall cell'?  I don't know if you want to post what part of the country you are from, but I had heard there was only one 'tall cell' specialist in the country---and I don't know where this particular doctor is located.  It might be worth me finding out so I can get some thorough testing.  I've posted a couple of times asking specifically about 'tall cell' and have only received a few responses.  Thank you for the advice.  I will definitely talk to my doctor about further testing.  Tara   YaYaTara Wed, 28 May 2008 00:00:00 GMT I've been told it has only been the last several years that they have designated a sub type group of papillary cancers based on the fact the cells may look different and behave differently.  Tall cell is just one sub type and it is named that because the cells are actually taller than normal papillary cells.  They are just learning and collecting data on how it reacts.  My endo claims it is still a papillary thyroid cancer which is the most common and treatable and he claims they treat it the same but I have discussed this with several other doctors who treat thyroid cancer plus have done research on line and all indication is that it tends to be more aggressive in nature and is further along when first diagnosed which was the case with me, I'm stage 3.  It is not unusual for papillary thyroid cancer to metastisize to the neck, actually it is very common.  The problem again with tall cell, it acts more agressively than its slower growing cousin, the common variety.  They have found, and again in my case, that it may or may not respond to RAI and may not show up in the scans, again I am a case where it has not. It is important to have blood tests to monitor your levels.  Again, I was told that the levels don't have to be as high to indicate a problem brewing.  Also, routine ultrasounds of the neck should be done as thyroid cancer first spreads to the neck before moving to other parts such as the lungs and bones.  That is why I did not feel comfortable knowing I had a positive lymph node in my neck and stayed on top of it.  Even the ultrasound did not pick up the additional two lymph nodes found on pathology.  And I read that it is not unusual to find more lymph involvement when they actually remove them and do pathology.  Since you present with questionable swelling, I believe, in the neck region I would push to have at least one biopsied to insure that they are not cancerous in which case I would push to have a neck dissection.  Why allow it to do whatever if you can address it now is what I say.  I had breast cancer 4 years ago and I don't need to mess with positive lymph nodes.  Yes, sometimes you have to be your own advocate.  My endo is a nice guy and kept telling me I would be okay and then he tells me about a 40 some year old male whole has spread and is not doing well etc.  I don't need any doctor telling me Oh, I'm sorry I didn't think it would do that after the fact.  In situations such as this I always seek a second opinion and do as much research as possible.  When you have your appointment then you can address those points, point by point.  One doctor told me he appreciated that I was so well informed.  I believe they take you more seriously too.  Today, with HMO's and doctors having to move patients through to exist, it is easy to become just another patient.  My doctors know me as a person.  Good luck to you!  (I'm from NJ) Leemg Thu, 29 May 2008 00:00:00 GMT  On 5/29/2008 Leemg wrote:I've been told it has only been the last several years that they have designated a sub type group of papillary cancers based on the fact the cells may look different and behave differently.  Tall cell is just one sub type and it is named that because the cells are actually taller than normal papillary cells.  They are just learning and collecting data on how it reacts.  My endo claims it is still a papillary thyroid cancer which is the most common and treatable and he claims they treat it the same but I have discussed this with several other doctors who treat thyroid cancer plus have done research on line and all indication is that it tends to be more aggressive in nature and is further along when first diagnosed which was the case with me, I'm stage 3.  It is not unusual for papillary thyroid cancer to metastisize to the neck, actually it is very common.  The problem again with tall cell, it acts more agressively than its slower growing cousin, the common variety.  They have found, and again in my case, that it may or may not respond to RAI and may not show up in the scans, again I am a case where it has not. It is important to have blood tests to monitor your levels.  Again, I was told that the levels don't have to be as high to indicate a problem brewing.  Also, routine ultrasounds of the neck should be done as thyroid cancer first spreads to the neck before moving to other parts such as the lungs and bones.  That is why I did not feel comfortable knowing I had a positive lymph node in my neck and stayed on top of it.  Even the ultrasound did not pick up the additional two lymph nodes found on pathology.  And I read that it is not unusual to find more lymph involvement when they actually remove them and do pathology.  Since you present with questionable swelling, I believe, in the neck region I would push to have at least one biopsied to insure that they are not cancerous in which case I would push to have a neck dissection.  Why allow it to do whatever if you can address it now is what I say.  I had breast cancer 4 years ago and I don't need to mess with positive lymph nodes.  Yes, sometimes you have to be your own advocate.  My endo is a nice guy and kept telling me I would be okay and then he tells me about a 40 some year old male whole has spread and is not doing well etc.  I don't need any doctor telling me Oh, I'm sorry I didn't think it would do that after the fact.  In situations such as this I always seek a second opinion and do as much research as possible.  When you have your appointment then you can address those points, point by point.  One doctor told me he appreciated that I was so well informed.  I believe they take you more seriously too.  Today, with HMO's and doctors having to move patients through to exist, it is easy to become just another patient.  My doctors know me as a person.  Good luck to you!  (I'm from NJ)You have been very helpful with this information.  I don't see my doctor for 5 months, so I might see my oncologist in-between for his opinion..  I wonder if a PET scan would pick up anything missed by our WBS?  I don't know what kind of a scan we have in a WBS--do you?  I also had another cancer years ago, so I don't like to put any checkups off.  Do you happen to know what our TSH and thyroglobulin levels should be?  They told me today that mine tested positive at 1 and that my TSH was 46.  I'm not sure what any of this means with tall cell.  I have family back east (NY + NJ) and have considered Sloan-Kettering for a second opinion.  Thank, Tara   YaYaTara Thu, 29 May 2008 00:00:00 GMT My understanding is an endocrinologist is more versed on thyroid cancer since you're dealing with an endrocrine gland and they are better apt to treat it following numbers etc.  Although it could be individual.  I also see an oncologist for my BC and he does not know much about thyroid cancer.  The hospital you mention is a great hospital, you can't go wrong in getting a second opinon there.  I go the the Hospital of the University of Penn in Philadelphia.  As for the numbers, I'm not that well versed on them yet but I do know from my own situation that after a TT and treatment they are aiming to get your thyroglobulin to undectable or 0.  Mine was .29 or 2.9 not shore of measurement but it was in the high 4's or 5 before my neck dissection.  At that time he wasn't too concerned because he knew I had that positive node in my neck and felt the number reflected that, but with that gone, we expected the number to drop to 0 or almost 0.  He said the tests are so sensitive today that years ago they couldn't measure below a 2.  It may or may not represent residual disease or tumor so I'm scheduled to go on the LID and get thyrogen injections mid July to prepare for a WBS and additional blood work at that time.  I guess of course if the scan reveals anything or if my blood level stays the same or goes up they will probably suggest another treatment of RAI.  My concern is what if the scan shows nothing and my numbers stay the same or begins to rise how do they find it.  I'm also scheduled for another ultrasound of the neck in July.  Since diagnosed with thyroid cancer an abnormal node has cropped up on the other side but looking at in from the ultrasound they say it looks benign and represents fat tissue.  If my numbers are troublesome in July I'm going to ask that it be biopsied as it is very close to where the isthmus was and that is where they found the positive node on the affected side.  I guess if all else fails to detect and if suspicious for disease, they could do a PET.  I also want to mention that with tall cell, my endo told me that if my thyroglobulin (I believe), could be one of the other number but if some number reached 20 he would be suspicous for distant spread if that helps. For now I don't want to think about it until July and try to enjoy the next 6 weeks.  If you do follow up for a second opinion let me know what you learn.  Leemg Thu, 29 May 2008 00:00:00 GMT I am scheduled for a second opinion from an oncologist on June 11.  I will definitely let you know what he advises.  I'll go to MD Anderson, Sloan-Kettering or wherever I have to go if that's his recommendation.  Tall cell variant sounds very aggressive and tricky.  I want to win this battle!  Thanks, Tara YaYaTara Thu, 29 May 2008 00:00:00 GMT Knowledge is power, I think you will do fine. Again, keep in touch! Leemg Fri, 30 May 2008 00:00:00 GMT