Could Those of You With Thyroid Cancer Tell Me What Ages Have Better Prognoses?

Could those of you who have had thyroid cancer tell me what ages have a better prognoses? The National Cancer Institute says under the age of 50 is considered a younger woman with it and a really good outcome,but on other medical sites including an article written by oncologists called NCCN Practice Guidlines in Oncology Thyroid Carcinoma from this year and it says it's more lethal after the age of 40 and that age is even more important than tumor size,others say it's better under 45. Can you tell me anything you know about this and what are the average ages of people on here who have had it and beaten it? I will be 42 in April so I'm over 40!

[utahmomma]

Please don't ruin your holidays worrying about this.  While you may have nodules, as you know, the chances are they are non cancerous.  It's good to be informed but it is better to temper that with rest, humor, good thoughts, and friends.

You asked about prognoses.  With most cancers, the younger and stronger your body - and the earlier the cancer is caught - the better the prognosis.  That being said, prognosis depends on many things.  Type of cancer, size, age, spread, etc.

Here is the info on different types of thyroid cancer and their prognoses:  http://www.endocrineweb.com/thyroidca.html

There are a variety of classifications for thyroid cancer.  Some weigh age heavily, others do not.  I'm not sure which classification method your hospital uses but mine uses TNM.  

The New York Thyroid Center has the references and ranges for the major cancer staging classifications.  
http://www.cumc.columbia.edu/dept/thyroid/staging.html

Here are the approximate ages at diagnosis from my family

37 - Stage I papillary carcinoma  
35 - Stage I papillary carcinoma w/Hashimoto's
32 - Stage I papillary carcinoma
28 - precancerous
24 - Stage II papillary carcinoma w/lymph node involvement
16 - precancerous w/Hashimoto's

My family goes against the trend.  The oldest (me) and youngest with cancer (24) both had to have RAI.  The 24 year-old because of spread had 3 courses of RAI.  I initially didn't have RAI but my thyroid cancer came back this year (3 years following surgery) and I've been through one course of RAI so far.

Try to get some rest and enjoy yourself during the holidays.  Don't let this consume you.

[fanofthefab4]

thanks utamomma,

but you and your sisters *were* all under the age of 40 and your nodules were really small,well mine are very small too, but maybe the reason you all came through so well is that you were under 40 at the time of diagnoses! I'm in good health except for these damn nodules! But I found an online article by a woman called I'm A Cancer Survivor and it was dated March 2003 she had three nodules like me but on one side,and she was 45 at the time,in this article she says that 25 years later she was still miffed as why she got it.  On this board there was a post from the fall of 2005 by a woman who said she had it at age 49 and was now posting 6 years later doing well. My stepmother also has a nonrelated aunt who is now in her 80's who had thyroid cancer when she was in her mid 40's.

Anyway,happy holidays to you too and it's a real shame you didn't know you would need to have the RAI the first time.

[fanofthefab4]

Venora,

Thank you again you always say the right great things! If you are 49 now,did you recently get diognosed and how small was your nodules(s)? I'm trying to listen to what you and many others are telling me, try not to focus and worry too much, but you have all been in my position so you know how hard it is to do this!

[venora]

I am 49.cancer was very small.I am taking no chances.I am on with the RAI.I intend to be around till least my 90's or my mind goes which ever comes first,LOL
I will tell you though my attitude ,my sense of humor,my faith and my family are getting me through this.Oh and this board.
41 is still young and the stats be damned.Too much information is as as bad as too little.and if you will pardon my bluntness
You  have waaay over done it with the stats. Knowing the size of my goiter isnt going help you because each one of us is different.
  So tonite I pray for you to not worry,relax and enjoy yourself till jan 17.Then relax till you get the results from your tests and go from there.We will be here for you
Now if you want to know some good meditation and relaxation tips,I can help out there.Just let me know.
Love Venora

[fanofthefab4]

utahmomma,

I had found endocrineweb two months ago while searching on google.com for information about thyroid nodules. What really worries me is they and some other medical sites list being hyper or hypothyoroid as favorable of benign nodules even though they say on the one hand that 95-99 % of thyroid nodules are benign. I have a normal blood test with no hyper or hypothyroid conditions.

[ceegee]

Dear Fan,

I've been reading your posts on here and on another thyca forum.  Sweety you just have to try to quit worrying until you know for sure if you have cancer or not.  My nodules that were picked up on the ultra sound were huge, however they were benign.  My cancer that they found after surgery was very small, so even though I am 49 and had pap cancer in both lobes I think I would still be a stage 1.

Thyroid cancer staging isn't as relevant as other cancer staging, so it isn't referred to a lot.  A little reading and informing yourself of what might be on the horizon is a good thing, but I am afraid that you are worrying yourself to death and you don't even know yet if you have cancer or not.

Try to take a break from this during the holidays.  I know it is hard, but obsessing about anything is not going to help at all.

Happy Holidays and Good luck to you.

[ChitChatNine]

You cannot change what is.  Empower yourself with "some" knowledge but you have to let go at a point and save your emotional energy in case it is needed down the road to help you heal.  

You need to take the negative energy you are feeling and go for a good exercise workout or yoga or something peaceful and "let it go" ... once you have some more info to go on then you will have a better idea of your %'s, etc., etc.  Don't get me wrong, it is ok to have some fear, ok to want more info, but then you have to process it and let it all go as best you can until you have more info from the medical professionals you are dealing with.

I sort of went thru what you are going thru now but it was after my FNA and the results were atypical ... I wrote to my pathologist directly to get the answers to ?'s similar to yours as far as my particular stats, etc., etc. as I couldn't find answers relating to my particular nodule and he was the best resource I had.  I took my chances and e-mailed him (feeling funny doing so) and he answered me in less than an hour!!!!!!!

Light a candle, take a warm bubble bath and CRY . Maybe that'll help you get thru this worst time .. the WAIT.  << hugs >>,

Cheryl

[fanofthefab4]

Thank you also Cheryl for more kind supportive words.

[fanofthefab4]

ceegee,

What other thyroid cancer board have you read my posts on? And did you repond on that one? Thank you for your supportive words but it's still really hard,and you had small cancerous nodules and on both sides,well I have three small nodules two one one side and one on the other! I have no thyper or hypothyroid conditions and I know it makes it more likely the nodules are benign if you do so that really worries me I can't help it!

[azqtpies]

Hi I am new on these boards, I have been searching the net as well as for some information , I am in the same situation as you, I have two nodules one on each side with a cyst on my right with the nodule. I found these 2 years ago oct, and they just watched them my first FNA was in June 05 which was benign on the right so just over a year.  they did not do the left, so I had a follow up in aug of this year another FNA right side was follicular cells, they called it sucspicious I was not happy with the endo thought he was a quack and found another one here at the Mayo Clinic, he repeated all test to get the same answer. So he recommended I get it out. I too am frightened my mom had her left thyroid out in 99 for a nodule which was inconclusive and was benign, so I try and hold onto to that the doctor all tell me 85-90% are benign and if cancer very curable, thou I find myself searching  for more info I am glad I found this site it does help. My surgery is March 5,07. So good luck to you please know there are others that are going through the same fears, I certainly know how you feel. I have got some good words of encouragement from these site. I ll say a prayer for you please let me know how it all goes, any questions ask. GOOD LUCK!!!GOD BLESS!

[utahmomma]

Surgery is *IS* frightening and it shouldn't be taken lightly.  I understand your fears - my mother has the same ones and is refusing to have her thyroid removed (but I'm working on her).  However my family has had 7 thyroid surgeries to date (four sisters, daughter, and me twice) so we have a little bit of experience.  

I don't know if you have had other surgeries or not so I'm not sure if you have a reference point for this but here goes.  I've had plenty of surgeries, as have my sisters and daughter, and we all agree that the thyroid surgery is the easiest surgery we've experienced with the fastest recovery.  There are some on this forum who have had more difficult surgeries (sub sternum, etc.) and many of us have had some complications (parathyroid problems leading to calcium drops) but all in all it has good outcomes.  

It is much easier than worrying about cancer, especially if you have suspicious factors with the nodules.  Your mother no longer has to worry about thyroid cancer.  Look over some of the other posts, I've included links to some great web resources.  If you need them again, let me know.

Fears are normal.  If you weren't frightened about surgery or the possible outcomes, that would be cause for real worry.  Worry makes you human and shows that you are intelligent.  You are in the care of the Mayo Clinic - that's wonderful.  You are seeking information and advice, that's wonderful too.  You fired an incompetent endo - that shows real spunk and care about your health!  You'll be okay - post away.  Three months can seem like an eternity so spend it with us!

[azqtpies]

Hi ,
Thank you for your support and information. It does seem like a eternity, the fear of the unknown is the worst. I have read so much information which some of it I wish I didn't but with my condition it can go either way is all I can come up with so I get left with the waiting game.
I am at some ease if that is possible with the fact of being at the Mayo Clinic with some of the best doctors, my husband keeps telling that. I only hope with my moms being benign that mine will be too. My husband and I want to have a baby  and I fear that if the outcome is cancer thou they say it is very curable that this will hamper that possibilty, my focus is on being benign and being happy for that .
I am very greatful for this site and yours word of support. I have a older sister that have a single thryooid nodule in the center that has follicular cells as well, thou she is refusing to have it out,hers looks like a adams apple, she said she sent her reports to soome pathlologist and she said she would call her benign by reading the reports which I think is scary I read that one single nodule is higher cancer risk than multiple? is this true, did you have one or mulitple?

Kelly

[utahmomma]

Kelly,

I understand what you mean about some of the information you wish you didn't know.  I went through my surgeries both ways.  The first surgery I knew NOTHING about my thyroid or cancer (just a few things I could find that made me want to have it out).  The second time, even though that lobe was nodule free, I knew way (WAY) too much about thyroid cancer.  Neither way is comfortable going into surgery but, between the two, I think that knowing the possible outcomes helped me cope better.

With your mother's nodule being benign you do stand a good chance that yours will be too.  And your husband is right - you couldn't be in better hands than the Mayo clinic!

As you probably read, my youngest sister had the worst case of papillary carcinoma and had lymph node involvement.  She also had to undergo three courses of RAI.  For the three years before her cancer diagnosis she and her husband had been trying, without success, to conceive.  Six months after her last RAI she got pregnant with her first child.  She was very nervous the entire time (she wanted to wait 12 months after RAI but - oops!).  She now has the most beautiful, energetic, healthy, intelligent 9-month old I've ever seen!  Her daughter is truly an angel - please don't worry too much about your chances of getting pregnant.  The nice thing is being on thyroid replacement your doctors will be able to keep your thyroid levels at optimal baby-making status!

You asked about multiple nodules versus solitary.  According to the experts (http://www.endocrineweb.com/fna.html) a solitary nodule is more suspicious for malignancy than multiple nodules.

I had a single, small (4mm) nodule.  I can't remember for sure about all of my sisters and my daughter but the majority of them had multiple nodules (3 cancer, 2 precancer).  I think there was only one with a solitary nodule (she was one of the three with cancer).

Finally, I wish your sister - like my mother - would take their thyroid conditions seriously.  Even if the worst diagnosis comes true (cancer) it is very treatable and curable.  The important thing is to be aggressive and have it removed before it has a chance to spread.  Maybe your example will help your sister value her health.

My best to you!  Please keep us posted.

[utahmomma]

All the doctors told us that there was no genetic link in papillary carcinoma - we fool them!  :-)  Actually all my sisters and I were so freaked out after all the surgeries that we spent countless hours trying to find SOMEONE, SOMEWHERE who was studying a genetic link in this cancer.  It took months but we did find a study and enrolled (sent in vile after vile of blood).  Apparently there are only like 3 or 4 families worldwide enrolled and we are the only one in the U.S.  We know that it won't do us any good but we're hoping that it might lead to a test someday (kind of like BRCA1 and BRCA2 for breast/ovarian cancer).  

There is a genetic link in many autoimmune disorders and other thyroid conditions.  Odds are though that the cancer doesn't have a strong genetic like (unless you're my relative then all bets are off).  It is encouraging that your mother's was benign.

I am with you on the FNA reliability though, I'm not a big fan of them and it seems awfully easy to get a false negative reading.  I still consider them "needle in a haystack" tests so I'm glad you got a second one and didn't just blissfully accept the first results.  Like I mentioned in another post - two of my sisters had FNA and the results were negative on both - both of them did have cancer.  

Sorry about the bummer news on the web site about people who are hyper or hypo having less chance that the nodules are cancerous.  Two in my family had slight Hashimoto's (which one endocrinologist doctor said *prevented* the nodule from being cancerous - WRONG!) one was cancerous the other was noncancerous.  The vast majority of thyroid cancers however do not have any abnormal labs.  It's kind of frightening.  Short of giving every person a screening ultrasound, how are these cancers supposed to be detected?  Mine was a pure fluke but I'm glad it happened, it looks like if my youngest sister would have waited much longer she would have been in some serious trouble since the cancer was already in both lobes and a lymph node.

As for me being cancer free.  Good question.  The technician at nuclear medicine (who has been doing this 20+ years and teaches it at the med school here) said that there was a *significant* amount of "aggressive" tissue in my thyroid area (they aren't allowed to say cancer) and he was sure I'd need to come back in six months for another dose.  My endocrinologist wants to watch the TSH levels for a few months then decide in late spring.  Regardless, I'm never going to consider myself "cured" and know that I'll always have to be watching for changes.  But I do know that I have a much, much better chance now than if I would have ignored it!

You're right about never really having your mind eased until you wake up in recovery.  It's sad but it's true.  You'll always wonder if the nodule is cancer or not until it's removed (or "ripped out and thrown across the OR" as I told my surgeon).  I think the "not knowing" is the worst part.  Surgery and RAI are no cake-walk but it's easier to fight something once you know what it is and show it who is boss!  

It's scary but you'll be fine!  Think good thoughts, stay healthy, and remember that my sister who thought she would never conceive now has a beautiful little girl.  Good things happen to cancer survivors!!!

[azqtpies]

Hi there, thank you for your comments and information all helps a great deal. I guess the waiting and the unknown is the worst. Thank you for some encouragement for hope on the baby issue. Congrats to your sister on their baby. How are you doing with your situation are you cancer free now, I Hope!. I wish they could find out what causes these, some doctors say they are genetic and some say no, but seems most of your family had them and 3 out of 4 women in my family have them as well as our extended family. I do wish I would of just had mine out two years ago when I found it, but with the  first FNA being benign I didnt feel any urgency nor did the doc suggest it. Makes me now wonder if the first FNA was accurate. I do hope people reads these and if they have them just get them out right away rather than waiting like me, thank you again for your support. The websites you gave are very infomative, however the one part where it says if they are hypo or hyper they are less chance to be cancer mine are normal so they news was a bummer. The worse part of all of this is no matter what info we read nothing eases the mind completely until we wake up from surgery to get the news, that I highly am not looking forward to.
Thanks again:) !

[fanofthefab4]

utahmomma,

you said that a single nodule *is* more suspicious for thyroid cancer,yet more of your sisters had more than one cancerous nodule. How many nodules did each of your sisters have?Did any have three nodules like me? Also, there is an excellent extensive online paper by The American Asociation of Clinical Endocrinologists called, AACE Task Force On Thyroid Nodules and they have many oncologists and endocrinologists as chairpersons and commitee members,and they explain that in the past it was once believed that if there was only one nodule and lare size nodules it was more likely to be cancerous but they have found that it's not really true and there is the same 5% chance of thyroid cancer in either. Also that there has been an increase in finding these microcancers and that many can be just as aggresive (aggressive) as the larger ones!

[fanofthefab4]

utahmomma,

Yes it is bad news that they say one the one hand that 90-95% of thyroid nodules are benign,but on the other that having hyper and hypothyroid conditions is favorable of benign nodules. But as I have posted elsewhere on this board, I have found at least 9 women on thyroid health boards who had normal blood tests,no thyroid conditions and yet they still had benign nodules. Of course some of them might have had false FNA benign results, but I think  some of them had them removed.

Tipper Gore the wife of former vice president Al Gore had a thyroid nodule discovered by a doctor from having an old neck injury and she was going for regular check ups,and she had no symptoms and didn't know she had it untill the doctor discovered it. She had two inconclusive biopsies and then had half of her thyroid removed,and it was benign. She was really lucky(though she wasn't lucky she had to have half of her thyroid removed) because the CNN article  about it from December 1999 is still online and it says that her blood test was normal and her thyroid was functioning normally. So it can happen,but I know it makes it more likely that the nodules are benign if you do have these hyroid conditions,and thats what really worries me a lot too!

[fanofthefab4]

Oh I forgot to mention that Tipper Gore was 51 at the time.

[fanofthefab4]

I also want to add,that on one medical site it said that thyroid nodules are so common and that they can occur in people with no thyroid conditions and that most are benign. On Penn State's Endocinology and Diabetes web site,they have an article on thyroid nodules. It also says that thyroid nodules may appear in what is a normal thyroid gland and over 90% are discovered to be not cancerous. You just to have to be in the lucky majority not the unlucky unfortunate minority!

[roidless]

Hi i was in your shoes about 2 months ago and from the moment I saw them (3) on the ultrasound till I was diagnosed with Papillary Carcinoma I worried just like you. I promise for me I worried because I was younger (25 at the time) and hadn't had children yet. Plus I have had hypothyroidism since I was 12. Anyway I have to tell you this YOU MUST BE STRONG, don't wear your body down worrying you have to breathe and let whatever happen happen. Be positive and have faith. Its true your body reacts to your mind. Thats what helped me most. Only one of my nodules out of three were cancerous, my surgeon also removed 9 lymph nodes and one had a small "trace" of papillary carcinoma. I will be going for my RAI in about two hours. One more thing may I make suggestion if they come out benign I would still consider having a total thyroidectomy. I had a couple at the age of 12 and they were benign then. They can turn at anytime. It was the first surgery I have ever had. Just a thought. Good luck and try to be positive.

[roidless]

Oh by the way after surgery they found out I had Hashimotos too.

[zenga2]

I have just been told I have 2 nodules one on either side they were found by chance, they are 4mm in size, I had an ultrasoud because I had a sore throat that hadn't cleared up after 3 antibiotics, plus a little swelling on my right tonsill( by the way they said that was caused by reflux) it appears to be going down. My ENT man said they want to watch them an ultrasound again in 6 months, I have had no thyroid blood tests just  general haemotology, like you all I find it worrying and think I will be in that % that has cancer, I want to have a fine needle biopsy, I have read on loads of sites that if the nodules are hot they are more likley to be benign and that cold nodules are more likely to be cancer.  My problem is language, I live in rural Italy and came out here a year ago, my Italian is not so good and in Umbria few people speak English not even doctors, but they are the kindest people and the drs have no arrogance unlike UK.
By the way I went back to see him and asked for thyroid blood tests, I do have pernicious aneamia which is autoimmune, and I have read that Hashimoto's and the pernicious aneamia sometimes go together.

I live alone in the most beautiful Country in the world, have travelled widley, I lived in Africa for 28 yrs and will be 65 in May. I am pleased I found this site I look forward to hearing from some of you.

[fanofthefab4]

I don't want to have my thyroid out if I don't really have to.

[fanofthefab4]

Also it's not true that every benign growths turn cancerous because many people have moles and beauty marks forever that never get bigger or change,and if every benign growth turned cancerous then most people would have skin cancer!

[fanofthefab4]

90% of cold thyroid nodules are benign as well.

[Amanda7980]

So what does it mean if you go against every statistic?  I was only 20 years old when I first started going through this mess.  My nodule was cold, and my blood work was normal my biopsy was inconclusive and the ultrasound showed it was partly cycstic and party solid.  Yet, they found out it was cancerous only after removing the whole thing and doing a path report.  Statistics don't mean much.

[mickey52]

I had a multinodular goiter for over 20 yrs.  took synthroid.  Ent thought I should have a FNA this past Dec. and told me the results were: consistant with papillary carcinoma of both the left and right thyroid lobes and would need TT ASAP.  TT preformed on 1/19, pathology results: no cancer found in either lobe.  I am am more than a little upset, as I really didn't need this unbelievable stress that I went through, aside for the surgery, the scar, the expense, and now...wondering constantly...whose pathology was correct?   Very freaked out...      anyone experience any thing like this?