It has been three years since my cancer was removed, the surgery was right after Easter weekend in fact. A couple of months ago I received another “clear” status!
Thyroid cancer is quickly becoming one of the most common types of cancer, with an alarmingly high rate of new diagnoses each year. It also has the highest rate of survival when caught early.
Yet most people are unaware of what their thyroid is, where it is and what it does. Much less how to find out the signs of thyroid cancer.
I was included in those numbers, I had heard of the thyroid but that was about it. Now I can tell you much more than I ever wanted to know about that very important gland.
I want to share with you a letter (e-mail) that I sent to my friends and family when I was going through the ordeal. I was on a very good support forum for thyroid cancer and writing this letter came highly recommended. The group was through ThyCa.org (thyroid cancer) a highly recommended resource on the topic.
This is my letter…
Dear Family and Friends,
My Journey With Thyroid Cancer
I am sending this e-mail out to friends and family to share my experiences (past, present and even future) with thyroid cancer. As I’m sure you know about me, I express myself with more ease in writing than speaking so this seemed to be the logical way to explain my situation to many people that care. Some of you have asked about it, and I am happy to share all I have learned and experienced. Maybe it will help you understand what I’ve been going through, or another friend or loved one someday.
For those who may be interested in skimming I have bolded the main points and you can read what interests you. If you don’t want to read this, feel free to use the delete button at any point – I won’t be insulted. Don’t feel obligated to answer this, really. This may be more than you ever wanted to know about the thyroid or thyroid cancer or me.
About the Thyroid Gland
I suspect most of you are like me – knowing little of this gland called the thyroid. I knew the name, but had no clue where it was or what it did. Here’s the brief version: The thyroid is a butterfly shaped gland at the base of the neck (just under the Adam’s apple), and wraps around the front of the windpipe. It utilizes iodine (usually taken in from food containing iodine), to produce hormones that regulate our metabolism and organ function – it affects about every tissue, cell, and organ of our body. If you don’t get enough of this hormone, you have hypothyroidism (hypo) – too much, you have hyperthyroidism (hyper). Both have a lot of potential symptoms. A lot of hypo symptoms are also those that happen with other conditions – like stress, aging, and menopause.
How my Cancer was Discovered
In 2005 I went to the doctor because I thought I had a sinus infection and the doctor felt my neck for swollen glands and found a lump which he said was a nodule on my thyroid. He started talking about the possibility of cancer and wanted me to get blood tests and ultrasounds right away. This was a lot more than I was expecting coming in to be seen for a sinus infection, I just wanted antibiotics! Many ultrasounds and needle biopsies later it was discovered that I had five nodules (growths, goiter) and some showed suspicious cells. I got a number of opinions from many different types of doctors (endocrinologists, an ENT, an oncologist and a general doctor). The opinion of most doctors was that my chances of having cancer was very low so watching the growth through ultrasounds and needle biopsies was my best option. (The only doctor who wanted me to have a surgery was the ENT who is a surgeon, NOT the surgeon who eventually did remove my thyroid.)
After “watching†the nodules (one of which disappeared) the consensus started moving toward the opinion of having my thyroid removed because more suspicious cells were being found and the nodules growing at a faster than normal rate — a very bad combination. I was then sent to a different ENT to discuss the option of surgery and he was not pushing me to get surgery at all, he said that because he is a surgeon it would not be ethical of him to try to convince me to get the surgery. Instead he took the time to explain the details of my lab results that I had not understood up to that point. Along with that and many prayers (and the continued growth of nodules and more suspicious cells being found) I scheduled the surgery date. (Unfortunately it is not possible to only remove the nodules without removing the thyroid, there are too many factors making it impossible. It is also often very difficult to get a positive diagnosis for thyroid cancer without removing it.)
Upon having my thyroid removed it was discovered that I did indeed have thyroid cancer: papillary carcinoma. It was in more than one nodule and on both sides of my thyroid. It appears to have remained within the thyroid as none of the surrounding lymph nodes which were removed had any cancer. Although the cancer did spread outside of one nodule to a blood vessel within the thyroid. That does concern me about the possibility of the cancer spreading but I have not asked my doctors about this directly. They still believe that it most likely stayed within the thyroid.
Treatment
Treating it is extremely important so that the cancer does not return. The cancer can return if any thyroid tissue remains, and you cannot get all the thyroid tissue out with only surgery. There is always some tissue left behind even with most skilled surgeon. So it is very important to destroy all remaining thyroid tissue with radiation. The surgery is a very important part of removing the cancer and is the first step in the process.
The surgery was very delicate, because there are little things like the vocal cord, nerves, and 4 little parathyroid glands (which control calcium levels in the body) all interwoven in there. I had an EXCELLENT very skilled and experienced surgeon, other doctors have told me he is one of the best. He was able to remove my thyroid and leave 2.5 parathyroids (you only need 1/2 of a parathyroid so I am doing good even though I’m missing 1.5). My calcium levels dropped severely after the surgery (more than normal for this type of surgery) so I had to stay in the hospital a couple of extra days to get my calcium up. I had numbness and tingling in my mouth, hands and legs due to the calcium levels dropping. At one or two points I couldn’t even move my left hand!
Having Thyroid Cancer
One hard part – emotionally – is just to deal with “having cancer”. You may hear people say (doctors said this to me), “Well, if you’re going to have cancer, this is the one you want to have”. Cancer is cancer. What they mean, and what is more accurate, is that thyroid cancer is generally a TREATABLE cancer. Most people, especially with papillary carcinoma like me, do not die from it. This is good, it is VERY good! I count my blessings in this respect. But it’s still cancer, and it’s still scary.
When you lose your thyroid (all or part), you are placed on hormones to take the place of what the thyroid would normally produce (it actually produces the hormone T4, which is converted by the tissues to another hormone, T3). You may know someone who takes Synthroid (or maybe you do) which is a brand name, used generically like “Kleenex” is for “tissue”. (I take a generic of Synthroid.) When you have no thyroid you take it every day for the rest of your life. You have to because eventually, you’ll die without it – your body will simply shut down (this takes a long time, not sure how long).
Radioactive Iodine (RAI), the Radiation Treatment
The next step for me (and most with thyroid cancer) is to have RAI (aka I-131 or radio-active iodine) I will take a pill of radioactive iodine. I will actually BECOME radioactive for a time. At first I will pose a danger just being in close proximity to other people but that risk goes down pretty quickly, one day for the test (low) dose and up to four or more days for the big dose. The amount of time is greater for being around small children, I still need find the specifics on that in order to keep my son and the preschool kids that I watch safe. Once I am safe to be around people I will need to take special precautions with fluids as the radiation will stay longer in saliva especially. I will have to take the same precautions as if I had a contagious flu. So I won’t be sharing food with anyone for a while. Thankfully the Thyrogen shots (explained in a couple paragraphs) will help get the radiation out faster.
Since the thyroid is the only gland that absorbs iodine, the RAI kills the remaining thyroid tissue left from the surgery and also any thyroid cancer cells. The treatment significantly reduces the chance of recurrence. Also, once the thyroid is no longer there producing hormones blood tests can track your levels and determine whether the cancer has come back at a later time.
First, they have to remove all the thyroid hormone possible and in the past thyroid cancer patients would have to stop taking their thyroid hormone replacement (Synthroid or other medication). I thank God that earlier this year the FDA approved another method so that I will not have to go off the medication. I felt horrible for two weeks waiting for it to kick in, I cannot imagine being off it for around 4-6 weeks. I will instead have to go into the hospital four times during my two weeks of treatment to receive Thyrogen shots. I’m not looking forward to it of course, but it is a hundred times better than going off my medication. The Thyrogen shots will trick my brain into thinking that I am not taking my medication when in fact I am and I will not experience any hypothyroid symptoms.
Low Iodine Diet (LID)
Additionally I will need to starve my body of iodine as much as possible allowing the thyroid to “uptake” or take in more of the radio iodine and having it be more effective. For 1 week prior to the start of the treatment I will begin to follow a low iodine diet (LID) for three weeks. Basically, I will eliminate things with iodine from my diet as much as possible. It sounds easy, but it’s pretty challenging. I won’t eat, among other things: dairy, seafood, soy, red dye #3, or anything that contains iodine. This includes obscure ingredients in foods like lecithin, carageenan, iodized salt. Most foods that say “salt” don’t distinguish whether it is or is not iodized, so it’s good to avoid anything containing salt, though the SODIUM is not a problem. I could have non iodized, or plain, salt to my heart’s content. Some foods and containers are also processed or cleaned with iodine, so I need to avoid those, as well.
I have one friend who is going to do this diet along with me so that I have someone else to do the diet with which I really appreciate! I have made it clear to her that I want her to get her daily dose of iodine in each day because not getting enough iodine can hurt a healthy thyroid. The point of me going on the low iodine diet is to kill off my thyroid tissue! I don’t want her to hurt hers while she’s trying to be a good friend to me.
My LID and RAI
I will start my LID on Monday the 14th, one week before I start my treatment. On Monday the 21st I will go to the hospital and begin my first Thyrogen shot after having a bunch of blood work done. I will have the shots on Monday and Tuesday and then get my first (low) radio iodine pill on Wednesday. I will be radioactive and will have no contact with children and limited contact with adults for 24 hours. So, the next step will be to have a body scan on Friday to see where the remaining thyroid tissue/cancer may be. It will be a full body scan and I will have to lay completely still for up to an hour and a half. I can’t wait!
The following week I will have the same schedule (still on the LID) only on Wednesday I will have the “big†radio iodine dose and be admitted to the hospital while I am radioactive and not safe to be around people. Possibly up to four days. Although the Thyrogen shots that I will receive will also help to me to get the radiation out of my system faster (both short term and long term) so the 4 days is likely for patients who are not getting the Thyrogen shots. When I say short term and long term, by short term I mean getting enough out so that I can be around people and by long term I mean the length of time it will take to get the radiation fully out of my body, it will hang out in my blood in very small doses for quite some time. The length of time will be dependent on a number of factors such as how much of my thyroid tissue remains, the more that remains the longer it will take. I had a very skilled surgeon who removed my thyroid so I should have minimal thyroid tissue remaining. Also the thyrogen shots should help to remove it from my system faster as well.
While I am in the hospital everything that I touch will need to be destroyed in the special manner that they use to destroy radioactive materials. I wonder if I will glow at night and if that will keep me awake? I can only bring things with me that I don’t mind having destroyed after I leave, such as magazines. I must leave my electronics. My mom is going to give me a paperback book to read, with all the time on my hands I will probably finish it! If I don’t I will have to buy a new copy to know how it ends!
My Thoughts
I’d like to think that overall despite fears, tears and some frustration I’ve kept a pretty positive attitude through all of this. I know that God is in control, he showed me that I even had needed to get this looked at when I had no clue. I thought I had a sinus infection and he led me to a doctor who knew what the nodule was when he felt it – apparently most general doctors aren’t even familiar with thyroid nodules.
Some of you may be wondering what to say that can help (or what not say). I will always appreciate people telling me “hang in there” or any form of “I’m thinking of you” or “I care” or that I am “in your prayers or thoughts or heart”. It’s ok to tell my YOU’RE worried, that you know I am, or that you wish you could change this. It’s ok to ask me questions. If we see each other, just giving me a hug is great. I won’t break, and you can’t catch my cancer.
I thank all of you for your thoughts, support and prayers! And in case I haven’t said it – thanks for caring about me!
~Stacy
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Thanks for reading! I hope that you have learned something helpful and don’t forget to check your thyroid for lumps! Feel free to leave any thoughts or questions in the comments section! If you think this is an important message please retweet and share on FB!
To Your Success,
(Image Source: ThyCa.org)
Thank you for reading! I'm Stacy, the owner of this blog. You can learn more about me here.
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This blog is a great source of information which is really very useful for me. Thank you very much for this important information.
FOR INFORMATION ABOUT THYROID CANCER.
[Reply]
Stacy Reply:
January 10th, 2012 at 11:41 am
Thank you, and thanks for the link!
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[...] My Journey With Thyroid Cancer: My Story & Spreading Awareness (96) [...]
Hi Stacy, My grandma died with cancer same with my aunt. I witness how they suffered from this kind of disease, however they thought me one thing. There are a lot of reasons to celebrate life. Life may come and go all you need is to appreciate all the small things that comes in to your life. Learn to love every person and be thankful to all the blessings. Life is too short, make it more meaningful.
~ Ashley
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Stacy Reply:
February 10th, 2012 at 10:16 am
Hi Ashley,
Thank you very much for sharing your experience, I’m sorry for your losses. You’re right that this disease does help us to see the blessings in life and to appreciate our loved ones because life is not always a guarantee!
Take care,
Stacy
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Ashley Reply:
February 12th, 2012 at 4:30 pm
I am too worried Stacy coz we have history with this disease. That is why I start to say thank you and I love you to my family and friend. Life is full of surprises we really don’t know what will happen tomorrow.
~Ashley
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Hi Stacy-
Very inspiring article. I am a stage 4 cancer survivor. I am two years out after 3 months of grueling chemotherapy. In july I am expecting another baby.
It’s inspiring to hear from other cancer survivors. You are seven years out so it according to the experts your are cured after 5. GOOD FOR YOU!!
Just some scary stats. 1 in 2 men will get cancer in their life time and 1 in 3 women will get it in their life time.
It’s an epidemic!! We need to stand up to this awful disease.
Thanks for the great article I just love to hear from people who beat this awful disease!!
sean
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Stacy Reply:
February 10th, 2012 at 11:29 am
Hi Sean,
Congratulations on being a cancer survivor and on your upcoming addition! That is extra exciting!
I agree, the statistics are scary! What an epidemic!
Thank you for sharing your experiences!
Stacy
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Stacy – My fiance was actually diagnosed with Thyroid cancer in 2005. He had his thyroid removed and went through much of the same process as you. Thank you so much for sharing your experience with us.
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Stacy Reply:
February 21st, 2012 at 4:44 pm
Hi Lisa,
I’m glad that he had a good outcome! When it’s found on time it usually ends well!
Stacy
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Hey Dear….I am really happy and inspired by reading your article. You are a strong girl and an inspiration for millions of girls and even boys out there who are diagnosed with thyroid cancer and are going through their treatment. Your experience has also provided me knowledge about thyroid cancer that I had no idea about!!!I will pass on your article to all those whom I know are suffering from any kind of cancer. They will surely be inspired by your story!!!
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Stacy Reply:
March 7th, 2012 at 3:17 pm
Thank you very much, Claire! I’m glad that this gave you additional information!
Stacy
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Hi Stacy, very inspiring story you have. This will serve as an inspiration to all. We are glad that you shared your wonderful story in this blog.
Happy to hear that not all people passed away because of cancer.
God bless,
Val Adams
Val Adams invites you to read… 8 Options for Small Business Financing Without Credit
[Reply]
Stacy Reply:
March 20th, 2012 at 2:55 pm
Thank you very much, Val!
Stacy
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John W Staggs Reply:
November 15th, 2012 at 4:22 pm
Hey Stacy, I have had thyroid trouble for 30 years or
longer.and I have never had the cancer. However I still write books.I am presently doing Ebooks. Iread your article,Icould tell you were an arthor of the way your letter was length of it. But I read it all.
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[...] very strong bonds that will last years. Some challenges bring about instant bonds. For instance, I’m a cancer survivor and there is an instant connection when I meet someone else who is one as well. There are plenty of [...]
I’m about to go for my first biopsy- two ultrasounds have confirmed at least one nodule that is growing . From 5.2mm in februray to 7.4mm in may of this year. I wish I knew if that was a “fast” rate of growth- or how worried i should be.
Why did you get multiple biopsies?
Thank you so much for your sharing. Stay strong
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Stacy Claflin Reply:
November 14th, 2012 at 8:01 am
Hi Carrie,
How are things going with your thyroid issues now? I had several biopsies because the doctors were keeping an eye on the rate of growth. At first, they had low concern about cancer but when there was rapid growth the concern grew and I had my surgery.
Please let me know how you’re doing when you can.
Stacy
Stacy Claflin invites you to read… Deception: A Preview
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carrie Reply:
November 14th, 2012 at 8:48 am
Thank you for the reply- It apparently was a “rogue lymph node” that was in the wrong location and causing swelling.
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Stacy, I am coming up on my 5th anniversary of surviving cancer. I survived a squamous cell carcinoma, the size of my thumb, growing at the base of my tongue. The one thing you said in your blog was the fact that you had a ‘pretty positive attitude’, and where mine was not so pretty, it sure was positive. My oncologist and all the wonderful people who came into my life at that time all commented on my ‘attitude’ and sense of humor about it all. THAT is what got me to 5 years. I would love to send you a free copy of my book, which I have written about my cancer journey. I think you will find it most interesting, or even scary. My cancer is the only one you ‘can catch’ because it IS contagious! If you wish, visit my ‘poor man’s blog’ at gnoled.blogspot.com and you will get a heads up about my book. Hope to hear from you and blessings on you for making your journey safely. bob
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Stacy Claflin Reply:
November 14th, 2012 at 8:03 am
Hi Bob,
I hope that you’re doing well. Congratulations on your 5th anniversary! I wasn’t aware of a cancer that you can catch. How does that happen? I would love to learn more about your book.
Stacy
Stacy Claflin invites you to read… Early Reader Reviews of Deception
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Thank you for both an inspiring and educational email that was also authentic. I just learned that I have pappilary carcinoma. I’ll never forget the exact time and date when my endocrinologist informed me. Somehow, I look at this challenge as another life experience yielding new perspectives and wisdom.
[Reply]
Stacy Claflin Reply:
November 14th, 2012 at 7:58 am
Hi Greg,
How long ago were you diagnosed? I hope that you are doing well now! Thank you for stopping by.
Stacy
Stacy Claflin invites you to read… Deception: An Interview with Alexis
[Reply]
Stacy,
Thank you for sharing your story. It’s these true life “touchable” experiences and connections that make it all so real.
While reading your story, it reminded me of my own story as if you were telling it for me.
I went in for a simple sinus infection and left with information that I have an enlarged thyroid. My doctor ordered an ultrasound of my thyroid, where several nodules were found on both my right and left sides. I was referred to an ENT, who advised that one of the nodules on my right was larger than they normally like to see. A FNA biopsy was order (not a fun ordeal) and the results came back inconclusive. After several discussions, I decided to have the right side of my thyroid removed. I am not really the wait and see kind of gal. On June 19, 2012, I went in for my surgery. A week later I was advised that cancer had been located. I was diagnosed with Papillary Carcinoma. The cancer was located in the thyroid itself, not the biopsy tested nodule. The next step was to talk to my thyroid specialist about the nodules remaining on my left side. Now of course, I couldn’t help but be concerned that my left side also contained cancer. After, my doctor working with his team they gave me the call I really wanted with the following options 1: watch the left side for nodule growth or 2: have the left side removed. Mentally before that call even came, I told myself I have a long life ahead of me, a 2 year old and a wonderful husband. I DO NOT want to worry about this every 6 months. With that said, I have my left side removed less than a week ago on 9/13/12. Today I received that call…. Papillary Carcinoma was also found in my left thyroid. Oddly enough, I was prepared and almost expected these results. Now I wait to find out my next move.
When I first found out of the cancer on my right side, I questioned my thyroid specialist about the odds of it being elsewhere throughout my body, he was very adamant that because it was found so early on that it was very unlikely and he wasn’t going to entertain the idea. I will now need to stress to him how important it is to continue on with whatever testing is needed to give me peace of mind or prepare me for another fight. I have it in me and will not let this define me. I am motivated to close this chapter of my life!
Again, thank you for sharing your story. I will be sure to reference your experience as my journey continues.
I hope all is well with you and you are living your life to the fullest.
God Bless,
Jenn
[Reply]
Stacy Claflin Reply:
November 14th, 2012 at 7:57 am
Hi Jenn,
Thank you for taking the time to write to me about your experience. I’m very sorry that I didn’t reply to this sooner, somehow I thought I had already replied.
How have things progressed? Have you had both sides of the thyroid removed? My doctors told me that if one side had cancer they would remove the other side whether it had it at the time or not (both sides did, in my case).
Let me know how things are going, when you get a chance.
God bless,
Stacy
[Reply]
Stacy thank you for all the information on this page. 4 months ago I found a large lump on my neck. I went to my GP & he immediately ordered an ultrasound of my thyroid. We found out they that ultrasound that I have a 5cm mass on the right side of my thyroid. He ordered a fine needle biopsy that indicated rare cells are present but was inconclusive since they collected fewer than the recommended 6 groups of 10 cells for testing. They recommended a re-biopsy. Instead I took all of my reports to my ENT & after talking them over with him, I decided surgery is the best route. I wasn’t thrilled about watching & waiting. I have 3 kids that need me & I just didn’t want to take any chances with something growing inside of my body that’s not supposed to be there especially when it said rare cells were present. My ENT felt it was the right decision as well since its large already & I’m having symptoms from the mass such as mild hoarseness, somewhat restricted breathing & ear pain. I am scheduled for my surgery on November 6th & he says I should have the pathology report back before I even leave the hospital. I’m still holding on to the hope that it is not cancer but the kind of person who has to know all the possibilities & a plan for everything. I can not stand not knowing, not having a plan, or not being in control. Your words & your story has helped this person who needs to know it all. Thank you for putting it out there & raising awareness. And congratulations on your journey & your cancer free results! May God bless you with many many more.
[Reply]
Stacy Claflin Reply:
November 14th, 2012 at 7:51 am
Hi Stacie,
I’m sorry that I didn’t reply sooner, I’ve been away from the internet. I hope that your surgery went well. I know how scary it is to go through this with kids. When I had my surgery, they only wanted to remove half if they didn’t find cancer. But, I told them to remove the whole thing regardless. I didn’t want to go through another surgery.
Please let me know how everything went when you can!
Stacy
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Thank you for sharing your story and this information. So many cancers can be stopped if caught early enough. My mother was diagnosed with pancreas cancer, but it was too late. She ignored many of the warning signs. It’s so important to share the signs and symptoms of each cancer, so people can be more aware. So glad your story had a happy ending!
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Hello,
I had a complete thyroidectomy on Tuesday, February 5th. I was sent in for an ultrasound and then referred to an ear, nose, and throat surgeon. My husband and I spoke with him for two hours about what should be done. We opted to forgo the biopsy and straight to removal. As it turns out I had papillary cancer on the left side of my thyroid and two benign nodules on the right. The doctor was very optomistic based ion the pathology report. I am thankful we opted for removal. Now I will have the radioactive iodine treatment in four to six weeks. I am trying to be positive but u admit I am still scared. Thank you for sharing your experiences. Because of you all I feel less Alone.
[Reply]
Stacy Reply:
February 12th, 2013 at 7:45 am
Hi Vanessa,
I’m glad that this was able to help you feel better! I know how scary it is, I remember clearly. It won’t be long until all of this is nothing but a memory and an annual visit to the doctor. If you haven’t been to thyca.org, I highly suggest it. Also you can go to yahoo groups and search for the thyca message boards. They’re really helpful!
Hang in there!
Stacy
[Reply]
Hi Stacy,
I can’t say how happy I am to read this blog which answers many of my questions. I was diagnosed with thyroid nodule 6 months ago. Actually, my daughter’s PCP noticed it in my throat, I was totally unaware of it. Ultrasound found nodule and FNA biopsy was performed twice as first one wasn’t definitive as doc said. Second biopsy didn’t say anything clear as I understood (as you said, it is hard to understand these lab reports). Doc suggested me to watch and come after 6 months. I had follow up this week, and after checking the size (it has grown bigger), he suggested immediate surgery which kind of scared me. I am scheduled to have surgery next week. They won’t know anything until the biopsy result but I am just very anxious. I know, cancer cells grow faster but how fast? Could you tell how long did it take from diagnosis to removal? How big was your tumor?
Thanks again for all the information.
Binalaxmi
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Hello Stacey,
Really enjoyed reading your blog. I was searching through the internet, just trying to gather info really while i await my appointment for an ultrasound. A week ago i found a large lump on my neck where my Thyroid is. When i saw the doctor he was lovely and patted me on the back and just said ‘i think we need to get that looked at in more detailed.’ He told be i had presented an interesting case. I am not going to pretend at this stage i am a little worried. I know it could be a number of things and i have always had the moto of not worrying until you have to but there is a little part of me now that is concerned.
Thanks again Stacey for just giving me some honest and easy to understand information.
Take care.
Amanda
[Reply]
Stacey,
I too had thyroid cancer, papillary/follicular variant in 2006, so I appreciate this blog. I’ve recently gone back to researching the disease due to the death of Roger Ebert, who you know, died recently and had papillary thyroid cancer.
The one thing that is always in the back (or front!) of my mind is that everything I read says there is a high occurrence rate. Do you know anything about this, specifically?
Donna
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