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Thyroid Cancer Recurrence

juliamcg
Posts: 1
Joined: Mar 2007

I was first diagnosed with Papillary thyroid cancer in 2002, age 20 - the nodule was about 4-5 (honestly cannot remember) cm, and cancer was Stage 1.

Today I found out that an ultrasound showed I have a mass growing where my thyroid used to be, 2 cm on the left side, 1 cm on the right, and a lymph node underneath my neck is enlarged by .5 cm (But they said it could be unrelated).

So right now I'm in that waiting period, and have an MRI scheduled for next Wednesday. I'm freakin out, very upset, and I really would like some support from those that have gone through recurrence and reassurance that my life isn't over yet. I am 25 and just got married, I was looking forward to so much and right now I feel as though my life is falling apart all over again.

Any words of wisdom.. advice.. anything.. thanks.

Julia

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Julia, I'm sorry you are going through this.

This board is often quite quiet, although I do hope someone with similar circumstances will contact you here, too... but you needn't go through this alone if you don't hear from anyone.

Consider joining this group - it is very, very active, and has many members that will have had similar circumstances, possibly even in your same age group - there are over 3000 members worldwide on this one - it's free to join, but I would definitely select the 'no email - I'll read messages at the site" option...they can have over 100 messages some days:
http://health.groups.yahoo.com/group/Thyca/

Another option is to contact the local group nearest you - give the facilitator a call, and maybe she can recommend a member for you to speak with, or as an alternative, contact the person to person network:
http://www.thyca.org/support.htm

You do need support right now while going through this, and hopefully one of the above will help you locate someone who has been in similar circumstances.

There is hope, Julia - and it is important that we get you in touch with someone who has successfully beat a recurrence... many folks have - we just need to find the right person for you to talk to, and Thyca may be able to help with that. All the best to you.

DanCampeau
Posts: 1
Joined: Mar 2007

Julia, I am also afraid of recurrence, I just went through the whole Thyroid removal, due to papillary cancer on February 14, 2007. My emotions at this time are unbelievable. I have never been so angry, so upset, so scared in my life. Now I am waiting for my Radio Active Iodine (RAI) appointments on the March 27 & 30, 2007, I can't believe the changes in my emotional state (a constant up and down) after being taken off cytomel. Julia, my prayers are with you. Dan

Nicki1433
Posts: 3
Joined: Mar 2007

I was also diagnosed with Papillary thyroid cancer at the age of 20, but in 2005. I was stage 3, but I don't remember the size. I too am undergoing testing right now...I actually go tomorrow to review recent blood work and u/s. I go sometime soon for a body scan. I also go Wednesday to a different doctor to check for possible colorectal cancer.

Good luck! Let us know how it goes.

1nathaliakarina
Posts: 13
Joined: Nov 2009

I am going to have another scan next week to make sure I dont have a reoccurence. I am stil very scared. I am currently taking 250 mcg of Levothyroid and it has taken 6 months to what it seems like a good dosage for me. I am afraid since it took that long for my levels to get to normal that my cancer came back. I have been feeling with much pain in my neck like a sore throat I hope it is nothing.

mel123
Posts: 1
Joined: May 2007

Julia, my husband, 43, was first diagnosed with papillary thyroid cancer at the age of 33. He is currently on his 4th reoccurance. Four of those followed with I-131 radiation, which obviously didn't help. He is now a patient a M.D.Anderson Cancer Hospital in Houston, TX. Our last appt. was March 07, he now has 2 small tumors in the right lung, which changes our yearly appts. to every 6 months. One of the doctors there say that he was not treated aggressively when he was first diagnosed. A higher dose of I-131 could have possibly made a difference. Not only was the thyroid diseased by it had spread to everything in the neck plus 6 inches into the chest. They cleaned him out with surgery, I-131, and said he was clean as a whistle. Exactly 2 yrs later, it was back on his coritoid arteries, 2 yrs after that it returned again in the neck area, another 2 yrs later it was back again, this time was the worst. His thyroglobulin level was 385, yet nothing was showing in the scans. Without surgery, they blasted again with I-131. Then told us he was cured. In disbelief, we headed for Vanderbilt Hpt., there they found that he was covered again, esophagus, vocal cords, coritoid arteries, veins, trechea, tumors under clavical bones, and still upper chest area. To our surprise the cancer pealed off and had not yet penetrated the organs. After surgery at Vanderbilt they referred us to MD Anderson. It has really been an great experience considering the circumstances. They seem to be up on all the latest procedures, medicine, etc. I know for a fact if he would of known about this 10 yrs ago he wouldn't be in the boat he is now. It is a little expensive to travel every 6 months from TN to TX, but when we look at our girls, ages 10 and 13, we know it will be well worth it. Advice to you would be to get to a well established research hospital asap. They have so much more technology and specialize in certain cancers. Take control of your life, not all doctors know what they are doing, we have learned the hard way. I basically have researched this myself for the last 10 years, but my husband only wanted to listen to and believe his doctors, now we see what we have known all along. Use your own judgement and always get a 2nd or 3rd opinion. Keep going untill you feel comfortable with what you hear. Its very time consuming, but worth every second. Hang in there, don't be just another number to your doc, find a specialist, better yet 2 or 3. I'm sure MD Anderson can help you, they also have a web-site under their name. Hang in there! Wish you the best! Mel

Tara34
Posts: 3
Joined: Dec 2009

I am 34 - was diagnosed when I was 33 and similarly my cancer has returned. I do not want to take I-131 - Do you know of any other options? I do not want to put myself through continuous surgeries and treatments - doctors were sure they got it all a year ago but here we go again. Would just like to know if there are any alternative or holistic cures or treatments available.

Jenny_Mancini
Posts: 1
Joined: Oct 2007

Hi Julia,
I had my first experience with thyroid cancer at 18 yrs old. LIke yourself I was very scared. I had a total thyroidectomy and receiced a very small amt of tx. I had a x-ray done when I was 38 for a back injury and they detected a spot on my rt lung. Since then I have had two large treatments and surgery on my rt lung to remove 6 nodules. Unfortunate for me I am about to go for more treatment. I have cancer in both lungs and the treatment don't seem to be working on the larger nodules. I first got diagnosed at 18 yrs old. I have since got married and have two beautiful girls and havelived a very healthy life. I work as registered nurse and stay very active with sports. I never let cancer get to me. Living with cancer is totally different than dying.......its up to you.Life is too short to worry about how long we have...I am 43 yrs old now...and life is still treating me good. MY only advice is make sure you get a big enough treatment the first time. That is why I am in this situation...not enough treatment and nobody cared to follow up. Don't take our health care system for granted......ask questions and listen to what others have gone through. I think your future looks wonderful....just make sure they treat it aggressively.....and never stop going to your yrly checkups. Good luck Julia......enjoy life...think positive.

laurnandchloesm...
Posts: 1
Joined: Oct 2009

HI I WAS JUST READING YOUR POST I AM GOING THROUGH THE SAME THING I AHD A COMPLETE THYROIDECTOMY AND THEY FOUND 8 MM OF CANCER MY THYROID WAS 7 INCHES LONG 3 INCHES THICK AND 4 INCHES TALL. I HAD NODULES THAT KEPT GETTING BIGGER. I WAS TOLD THAT 8MM WAS TOO SMALL OF AN AMOUNT TO GET THE RADIOACTIVE IODINE TREATMENT SO I WAS OK WITH THAT I JUST RECENTLY HAD BEEN HAVING PAIN IN MY NECK UNDER MY CHIN AREA AND WENT FOR AN ULTRASOUND ON OCT 14,2009 THEY FOUND A ENLARGED LYMPH NODE IN THE AREA MY CANCER WAS AND 2 SPOTS THEY THNK MIGHT BE TUMORS. I AM SOO SCARED IVE GOT AN ALMOST 19 MONTH OLD AND A A 3 MONTH OLD AND I DONT KNOW WHAT TO THINK OR DO OR ANYTHING. HOW ARE YOU DOING NOW? WHAT TYPE OF TREATMENT DID YOU HAVE ETC.

straussu's picture
straussu
Posts: 21
Joined: Dec 2007

I had a small papillary cancer (.7 cm) 15 years ago. 2 years ago I had a recurrence. My thyroglobulin numbers were getting larger. They did a radioactive iodine scan to check and found something had grown back. 2 months later, I went into the hospital for I-131 radiation treatment. I lost my voice and had some sinus issues for about a month, but since then I have been fine. It's scary I know to hear the word recurrence. Good luck to you.

selaine
Posts: 1
Joined: Nov 2009

My daughter had her thyroid removed at age 19. All follow-ups were good until the last two years when they said her thyroglobulin levels were elevated. They did all the scans which showed up nothing. She just found out she is pregnant so she can't go through all the scans and testing she usually gets each year. But her ENT says he is 99% sure she has cancer somewhere but they just can't find it. The only thing they can do at this point is a ultrasound of her neck and if something shows---surgery. If nothing shows up on the ultrasound, they are thinking that the pregnancy may bring out the "hidden" cancer.

This ever happen to anyone else. I'm scared to death of not being able to find the cancer and not being able to treat it. We have a strong family history of all kinds of cancer including breast (me, aunt and grandmother) and lung. So having cancer just lieing around waiting to show up is extremely stressful.

BellsAngel69
Posts: 102
Joined: Dec 2009

Hi Julia,
In Dec. 2003 I found a lump in my neck under my collar bone, had it removed, and was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. The next time I went for blood tests after skipping the scan, my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again.

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

Keep your head up and don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

sfl67
Posts: 55
Joined: Nov 2009

Hi,
I'm sorry to hear of your reoccurence; this is something I think of daily. I was diagnosed in July 09 after a total thyroidectomy. My tumor was 3.5cm's but was attached to my trachea and embedded in my throat, but my surgeon was optimistic although he could not get a clear perimeter. He did what he called a modified throat dissection and explained if I had a reoccurence it would probaly be necessary to go back and do a radical throat dissection. This cancer is matastic and can attact the vascular system as well as the lungs, bone marrow and other soft tissue I'm told. I had the RAI-131 in Sept. 09 followed by a total body scan that showed uptake only in the throat; am scheduled for an ultrasound in Feb. and thyrogen injections and another scan in March. I am on Synthroid 125mcg's once daily and my TSH levels are 1. I live in a rural area and medical facilities are at least 100 miles away, so my computer has been my best source of knowledge although I'm not sure what sites are best. I don't agree wilth all my Endo. tells me; if my test results are good he will not see me for two years and I think this is too long with the HCC diagnosis. I am almost 60 years old and have two adult daughters who live away but I am blessed to have a caring and devoted husband who has made this trip with me thus far. I have read that the PET scan is more effective, but my Endo has said no, this isn't necessary. A friend has suggested another opinion at the Cleveland Clinic. I am very uncertain what is the best thing to do, but I know this is defined as a rare and aggressive cancer that responds less than 10% of the time to the RAI-131, but was told this was my best option. I would like to follow your treatment if you have the time and wish. I hope to hear from you. Thank you for posting, I would like to keep in touch with those going through the thoughts and feelings I have.

BellsAngel69
Posts: 102
Joined: Dec 2009

I don't think your endo doc is very up to date on thyroid cancer. Two years? You should be seen at least every three months with blood tests and ultrasounds. You should seek another doctor in my opinion

changoslf
Posts: 4
Joined: Jan 2010

I will make this quick and short for my story i have MEDULLARY thyroid cancer and possibly MEN2 syndrome behind that...my calcitonin levels kept creeping high and none of the regular PET scans were showing that i had any hotspots but my blood markers were rising. After consulting with a radiation oncologist he said he would try a DMSA scan which is used for metabolic bone diseases and certain thyroid cancers...and like night and day they appeared..i had a total thyroidectomy but NO radiation therapy prior to this scan..now the DMSA scan showed it in my COLLAR BONE same as yours stated..i had the radiation therapy and and now doing follow ups to see what it does now..hope this helps you can email me if i can help anymore..

1nathaliakarina
Posts: 13
Joined: Nov 2009

I was diagnosed with Papillary cancer 6 months ago. I had my whole thyroid removed. I went off Cytomel for two weeks and my experience was different. After 6 days of cytomel I started to have a muscle breakdown and was in constant pain all the time.. My muscles ached all the time. I just felt real bad. You should take it easy, and just relsx before your RAI treatment. Best of luck

BellsAngel69
Posts: 102
Joined: Dec 2009

I know the pain all to well. I would wake up with the most excruciating pain in my hands. They would go totally numb and I would be crying in agony for hours. It was one of the worst side effects being off my meds. I still have the pain occasionally, although not nearly as severe.

jamj1758
Posts: 1
Joined: Jan 2010

Reading everyones' comments is exactly what I have been going through just recently.
My test results have all been good since the total thyroidectomy and I-131 treatment back in 2007. Recently, cancer was found in my lymph node which surgery handled last month. Now the PET scan shows 2 areas of concern in my neck. I am scheduled for a MRI and more I-131. A much bigger dose compared to the first time. After reading everyone's comments I wish I would have been treated more agressively in the first place. I had switch Endocrinologists and my new one had made the comment that I should have had a higher dose originally. While I am not sure what lies ahead I try to be positive as we all should.

ima_survivor
Posts: 6
Joined: Jan 2010

I have also had a total thyroidectomy in 07, followed by two RAI-131 treatments, and then a lymphectomy in December in which 9 out of 11 were cancerous. I'm due for my next RAI-131 in two weeks. Sometimes when the doctor sees the areas on the scan light up, they want to blast you with the RAI-131, but this will NOT WORK on areas that are not microscopic, and sometimes it's hard for them to tell with the PET scans and body scans and MRI (I would opt for ultrasound so they can see how large the residual tissue is). My nuclear med doctor wanted to give me a third huge dose when my scans were still lighting up, but I refused and demanded a referral. I'm not just trying say I know it all, obviously I don't, but I do have a ton of experience with this, and I now see an endocrinologist who specializes in thyroid cancer who consults with a panel of specialists in thyroid cancer to determine the best course of action, and this is where I'm getting my information! the RAI-131 is not without its consequences, although it is safe, there is a point at which it damages your other organs and it is always ineffective at destroying large tissue masses. I wish I would have known this the second time around, since this was basically a waste of time for me. I just have a question, are your body scans showing a decrease in activity? Whatever you choose you have a great attitude, which will get you through it!

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