About

I am a young woman with thyroid cancer.  I’m here to share, support, and express.

I want this blog to be a discussion, so please feel free to leave comments about things I’ve written, things going on with you, things you want to see written about, or whatever you feel you need to say.

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28 Responses to “About”

  1. Yo! How goes it? How are you doing?

    This email is an invitation to participate in the “Thyoliday Blues and Truths” holiday blog tour hosted by Dear Thyroid in an effort to create awareness for thyroid diseases and thyroid cancers. Throughout the month of December, we are asking renowned bloggers to join us in this endeavor. If you accept, please choose a date to post your answers to the questions I would like to send you, kindly confirm the date with us and send us the URL, so we can direct our users to your site!

    Doable and fun, right? Right.

    I hope you’ll participate. Please email me with any questions you have and with your email address, so I can send you the Q’s.

    xo
    k

  2. 2 Mike Twohig

    Katie,
    Feb.17, 2010, my spouse, Catherine, called our PCP for a standard prescription refill.
    The nurse asked, “By the way, did your husband get a call about the results of his needle biopsy’?” I had been waiting for days. No news is good news? In fact it was in December, during a routine exam that my Doctor said my thyroid was enlarged, and scheduled me for a sonogram and thus a CAT, then a biopsy of found nodules. My wife handed the phone to me, and the nurse handed her end to the doctor.
    I got ready with a notepad. My Doctor told me I had cancer of the thyroid.
    I noted a “c” on the pad; that’s all the notes I took. My thinking went fuzzy.
    I am scheduled for a “medical oncology consult” Tues.02/23/2010 at the Regional Cancer Center in Erie, PA.
    At this time I’m reading much thyroid stuff and your blog and related writings.
    So the rhetorical question is… Is this the beginng or the beginning of the end?
    I had to write someone.
    Thanks,
    Mike
    Edinboro, PA

    • Hey Mike,

      What type of thyroid cancer did the doc say? Please let me know how the appointment goes on Tuesday!
      I was diagnosed post-operation. And I assume that you will also need to have your thyroid removed. So, to your rhetorical question, I’ll take the liberty of telling you that it is definitely not the beginning of the end. It is, however, the beginning of something not for the weak at heart. If you leaf through my blog, you’ll get some what of an idea of what it’s like to go through the whole thyroid cancer ordeal. Mine is extra special, and has yet to depart from me. But, trust me, it will be hard to go a day without noticing or reminding yourself that you have thyroid cancer. For me, I’ve started forgetting that I have a scar. But in the morning, I have to take my medication. And I am always faced with the problem of keeping my medications on me at all times, just in case, for whatever reason, I can’t get home in time in the morning to take them.
      I had my treatment and surgery in Pittsburgh, and although I didn’t love my endocrinologist, the surgery was very well done. Erie is of course good as well, but in my opinion, since you’re in the area, perhaps get a second opinion at UPMC.

      Anyway, I hope to hear good news from you on Tuesday!
      And I am always here for any type of support you need,
      Hungry

      P.S. Katie is just a commenter on my page, I’m HungryforTSH ;-D

  3. 5 Mike

    HungryforTSH,
    Ooops! Yes, just after I pressed the send button, I realized my “Katie” error.
    Even though I use the computer all day at work(an end user), I don’t use it very much to socialize, and my spelling is bad, so forgive me.
    In the brief discussion w/PCP doc, I was told I have Papillary Thyroid Carcinoma.
    BTW two of my sisters had thier thyroids removed years ago and are now in thier late 60’s.
    As you may know, more tests now have to be done to find the staging level.
    Since I’m “older than 45 years of age”, and my left lymph nodes are seem to be swollen, I’d predict Stage III . I didn’t sleep to well last night.
    Doc said nodes may be swollen just from the trauma of biopsy at
    three different sites, two on the left side and one in the center on the (ismus)?
    The one in the center seemed to be the one they were most concerned with.
    I got the watch the monitor, some of the time, as the biopsy was going on and the doc was locating and poking his needle.
    I think the Regional Cancer Center in Erie is run by UMPC , and yes, Pittsburgh is an option.
    Other bio… After having an irregular heart beat for about ten years, the insurance co. finally agreed with me to have cardiac ablation at Clevelad Clinic, but I lost a few months getting a second opinion .
    But now I am “cured” of heart problems. It was during the follow-up general physical with my PCP in December that he “had to find something else for me to worry about”. :-)
    And unrelated… My wife, Catherine, and I are booked on a Mediteranian Cruise starting March 25th,2010.
    My official retirement date from General Electric is April First.
    Isn’t life ironic?
    I have to go.
    BTW I have leafed through some of your blog.
    I admire you for doing your exellent VBlog. You are brave!
    Wishing you the best,
    Mike

    • Hello Mike,

      I know how hard it is to not know anything (like staging)… but prepare yourself, this whole journey will be one of long waits. Waits for blood work, pathology, scan results– everything! I’ve begun to give up on being controlling when it comes to my body. Sometimes things don’t work properly (salivary glands, tear ducts), and I don’t even bother calling the doctor. I assume it’ll go away soon. And with this, also for my results, I used to call the day after every few hours, assuming that there was some weird reason I wasn’t getting called back… but now I just wait– I let myself let go of the idea that I had just had a test, and just allow myself to be surprised when I get the call– which ever way it goes.
      Do you have a thyroid disease? Like Hashimoto’s? I have Hashimoto’s plus the cancer– but it’s very deceiving, because when I’m hypothyroid or my TSH is being funny– or just because, my antibodies will kick in and make my lymph nodes swell to the size of large grapes. There might be another reason behind the swelling (I hope, at least!!).
      Although this might not really put you at ease, the survival rate of those in the Stage III category (+45) is excellent for papillary thyroid cancer. The most important thing is the surgery, and the scan to see if there are any metastases. Even dirty lymph nodes can be mute in the prognosis– the major piece is whether there are any distant metastases. Hopefully, though, you just had a nasty nodule on the thyroid, and it hasn’t gone anywhere.
      I still, to this date, am very uncomfortable knowing that my body had tried to attack me– and every time I get something weird in my neck, or any bizarre feeling, I worry that I have some sort of a tumor that wasn’t found. So I understand how daunting it is at first to try to figure out what you have ahead of you.
      But hopefully for you it will just be a surgery, and a round of radioactive iodine therapy to ablate anything else.

      By the way, about the cruise, make sure you tell your docs about it so that they can schedule around it. Recovering from the surgery will take a while if they do a compartment dissection, but within a week or so you should be feeling fine enough to go on vacation– just as long as you take it easy. It would be a shame if the doctors accidentally scheduled something in your cruise time frame!

      Again, please let me know how it goes on Tuesday!!! My thoughts are with you!

      Hungry

  4. Hi there,

    Just stumbled across your blog and wanted to say hi. You have a lot of similarities to my daughter Lauren, who was diagnosed almost 6 years ago and continues to fight her battle. Thank you for sharing your thoughts with the world. I wish you many blessings.

    Sincerely,
    Stephanie
    Trenton, OH

  5. 9 Samantha

    Hi,
    I just want to say thanks, this blog has really helped me be less freaked out about surgery. I’m 21 and was diagnosed with thyroid cancer (papillary) a few months ago. I’ve been having issues with it for about 3 years now. I was originally just hyper with a very large nodule, and then they told me cancer. I’ve been worried about surgery and recovery and this lets me know what is going to go on before and after surgery.
    Thank you!

  6. 11 llama

    Hey, I have papillary cancer, and I know this sounds a bit shallow, but my greatest fear is straight after the operation when I wake up and have to go to the toilet, I refuse to use a bed pan, but I don’t think I’ll be strong enough to walk to the toilet. what did you do?

    • I hope it’s not too late for my response! Anyway– you probably won’t have to go to the bathroom directly after the operation— the anesthesia slows everything in your body down (intestines, kidneys, etc.). But if you do have to go, then ask a nurse and they’ll help you get to the bathroom! I think the first time I usually need to go to the bathroom after an operation is usually a bit more than an hour after I’ve been brought to my room– so that’s about 2-3 hours post-op. I’ve always made it with the help of a nurse or my boyfriend!

  7. Hello!

    Love your blog!

    Have you heard of the int’l thyroid patient petition for better care: http://www.change.org/petitions/endocrinologists-patients-with-thyroid-dysfunction-demand-better-care?=1&fb_source=message

    Only 2months old, and it is supported by over 3000 signatures from 65 countries. We are trying to reach every thyroid patient we can so, they can choose to be represented. We all know we need change and it will take large numbers to accomplish that goal.

    We are also trying to unite all of the thyroid bloggers and websites to create the global network that can effect change.

    If you can help us reach your members by blogging about us, we will gladly list you as a supporter. https://www.facebook.com/notes/patients-with-thyroid-dysfunction-demand-better-care-petition/websitesblogs-supporting-our-ptd-petition/344493798956111 https://www.facebook.com/notes/patients-with-thyroid-dysfunction-demand-better-care-petition/noteworthy-individuals-supporting-our-ptd-petition/343704432368381

    Here is an interview by Sarah Downing to help you get to know us better: http://sarahjdowning.com/2012/06/05/interview-with-the-initiators-of-the-petition-patients-with-thyroid-dysfunction-demand-better-care/

    Thank you in advance for your support,

    Michelle

    Michelle T. Bickford
    Author
    Patients with Thyroid Dysfunction Demand Better Care
    http://www.facebook.com/thyroidpetition

  8. 15 samantha

    Hi,

    I am now 56 years old. I was diagnosed with papillary carcinoma when I was 43 when I discovered a small lump on the right side of my neck and it never went away Needle biopsy/FNA under ultrasound found no lymph cells and the sample was significantly compromised because of all the staining, de-staining and re-staining they had to do, so my diagnosis was “possible” or “probable” papillary carcinoma. The pathologist apparently encountered difficulty in determining what kind of cells WERE in the sample. This was done at UCLA in their head/neck cancer specialty department. I never did have surgery and have been healthy and strong. My thyroid results have always been completely normal.

    So, here I am, 13 years later and now, my neck is full of lumps. It is my contention that the first FNA I had (w/o ultrasound) was a “thru and thru” which allowed cells to escape, just like when you punch both sides of a tin can to get the contents out. That first FNA didn’t find any cancer cells, which is why I had to go again. I also went through several periods of great stress where I feel my body’s immune system was compromised and that contributed to the acceleration of this cancer spread. I will not allow the doctors to do any more FNA’s.

    No one 13 years ago thought to test my thyroglobulin AB’s and when they were tested for the first time 2 years ago, the results were through the roof! Definite cancer marker, all the docs said. Then, I read that high TgAb could also be a marker for Hashimoto’s Disease, but that you had to have another test done to verify it. So I asked (yes, I had to take control of this because the doctors just want to fit you into a little patient hole and be done with you) to have this additional test run and, “lo & behold” it came back through the roof as well. So, now we know that I have some kind of strange sub-clinical form of Hashi’s which doesn’t show up on any tests. My TSH is completely normal – even on the low end of normal.

    I wouldn’t even be dealing with this except my neck is so full of tumors that I have now lost range of motion. I can’t turn my head to look behind me.

    I have surgical consults scheduled with two of the top doctors in my area. I already know that they will need do a radical neck dissection as I have huge lumps up and down both sides of my neck. I don’t know if I can go through with this as I absolutely refuse to have the radioactive ablations. Those scare me more than the cancer does. I’ve been living a healthy life for 13 years with a neck riddled with cancer and, after having read your blog, I’m wondering if I should just leave well-enough alone and not even open this can of worms. I’m much older than you and would rather remain healthy until the cancer eventually makes me sick. I’m thinkin’ if it takes 10-20 years, that will be 10-20 years of not having pain or surgeries or ablations or getting stuck with needles and it might be worth it.

    You are a brave girl to be going through all of this in another country far from your family. I can’t help wondering if you wish you had just left it alone?

    • Well, I’m so sorry I didn’t see this until now!
      I have dealt with those feelings of what ifs ever since my first operation. Sometimes I wish I had just left it alone– but most of the time I’m happy to keep having it cut out of my neck. I’m not so sure if I can explain this properly- but I’ll try. I wasn’t even 20 when I got my diagnosis, and I feel like the diagnosis robbed my of a bit of my young adult life. Not that I lost much time, but that I was forced to think more about so many things. I have to think about getting married and having kids very soon, because I probably won’t be able to have kids in two years. I can’t be as spontaneous as I’d like to be because I always have to know where I’m going to get my synthroid and gabapentin next and it’s hard to plan things in the far future like vacations because hotels and airlines don’t really care if you have to get radiation during the time you had booked your stay. I have to go to the doctor at least once every two months and have to take bad news with a stride because if I lose my positive attitude to it all, I wouldn’t be able to be even remotely “my age”. It’s really hard to talk to my friends (except my boyfriend– we’ve been through a lot together and he understands) about what’s going on in my life because none of them seem to be able to imagine what it’s like to have cancer… last week one of my friends told me that if she were me, she’d cry every day. And I guess that’s just part of being “older” that, of course I can be sad, and I can be sad often, but my life goes on. I can’t stay sad or cry every day of my life because that’s not really living. I take what I can get and I’m satisfied. Bad news today? Ok, that sucks, but let’s see if I can find something to cheer myself up and try to get over it. So I guess, in this sense, I really would have loved to have left it alone. I would be normal- well at least for another couple of years until it caught up with me.
      But the thing is, I’ve had the cancer in my neck for a while as well– probably about 5 years before I was diagnosed. And my cancer was stage three when they removed it. So, I suppose I’m glad I had it removed, not just because there’s no further stage after stage four, but because knowing I had something in my neck and not knowing exactly what it was (and having it removed if it was malignant) probably would have driven me nuts. It certainly did enough for me to have the first surgery in the first place! I guess it’s a game of patience- and I suppose when it comes to my health, I’m somewhat impatient. But I guess what comforts me is that I run the show- I make the final decisions when it comes to my cancer. So I can go as far as I want to. I have a living will to ensure that even when I’m knocked out, my wishes will be respected and I don’t go past my comfort zone. The past two years I have refused all radiation but after my last two whole body MRIs I decided I would feel more comfortable finding out what the new growth was and I decided (with my oncologist) that I would, although apprehensive, do another RAI to see if the tumor absorbs iodine.
      I guess what I’m saying is- if I were in your shoes, even being older then me- I would probably still go through with the surgery but set boundaries. If you’re worried about what could happen if they find more infiltration than have showed up on the scans, then I’d explicitly talk to the surgeon about it. I had a similar talk to my surgeon- I told him if you see that it is heavily infiltrated and you would have to remove a vital structure (parts of the trachea, nerves, etc.), close me back up. And I guess I would take comfort in knowing that, you could go through with the operation and not have to do RAI if you don’t want to. At least you would have the range of motion back.
      Your immense patience is commendable! Sometimes I wish I could be that way as well.
      Let me know what you decide and how everything goes,
      Hungry

      • 17 samantha

        Hi and thanks for addressing my question.

        To update on me, I’ve had a surgical consult with one of the doctors at the Cedars/Sinai Thyroid Center and, of course, he just wants to cut. He would do a modified radical neck dissection, preserving my carotid as well as the nerve to my shoulder, he thinks. He said that my cancer is between stage 2 and 3 and that he has no idea if it will just stay that way or become more dangerous as time progresses. He said that I can chose not to have the RAI, but that there are probably thyroid cancer cells coursing through my body right now, whether or not I decide to do the surgery. I had left all of my slides and films and CDs of my neck with the surgeon because he said he wanted “his people” to analyze them, but then could not answer even ONE of the specific questions I asked him about these materials and his office accidentally sent my slides (which I owned and marked as such and went through an entire explanation about) back to the original lab and I had to jump through hoops to get them back. I felt like my wishes and needs were “secondary” to the doctor’s medical “agenda” and that he puts up a good “show” about looking at my specific stuff, but then says whatever he was going to say in the first place. I feel like it was all an “act” to gain my confidence and make me feel like I was getting individualized treatment. Most people put doctors on pedestals and hang on every word. I don’t. I frequently know more than they do about the latest research and it freaks them out when a “patient” tries to speak to them on their level.

        I canceled my appointment with the 2nd Thyroid surgeon (at UCLA) because I predicted it would be more of the same. I will be going for more thyroid blood tests in a couple of months and will see what the results are.

        Since I am more afraid of the treatment and these #@$&% surgeons than I am of the cancer, I have decided to do nothing for now, except eat a healthy diet, exercise and take supplements to boost my immune system. I my mind, “cancer” is nothing more than an abnormal cell that’s gone berserk and is changing the way a person’s body functions, usurping the normal functions and creating havoc. I think that we are all exposed to “cancer” and have these abnormal cells in our bodies at all times, but our immune systems, if strong, keep them in check. So far, I have felt OK and am reticent to do any procedures that will change that. Especially after having read your blog!

        It’s not that I am “patient”. It’s that I’m absolutely terrified! The thought of surgery causes me so much stress that I just shut down and become catatonic, unable to function at all, whenever I think of it. I have no family to take care of me either, so if I get sick from having the surgery, it will be very difficult for me to live.

        You are such a brave girl. To have had to make out a “living will” at your age is harrowing thought. I was glad to read that you have a boyfriend and a family. Having a good support system is of paramount importance when one is sick. I wish you the very best of luck with this new surgery and am hoping to follow your progress back to a healthy state. Thank you again, for your consideration and well-thought out answer to my question.

        P.S. I posted this at the bottom and then realized that I should have hit “reply” underneath your answer to my first comment. I’m such a spazzz. I will try to delete the other post. If I am unable to do so, please feel free to delete it for me, so it doesn’t show up twice.

  9. I believe what you posted was actually very reasonable. However, what about this? suppose you added a little information? I mean, I don’t wish to tell you how to run your blog, but what if you added something that grabbed a person’s attention? I mean About Dude Where's My Thyroid? is kinda vanilla. You ought to peek at Yahoo’s home page and see how they create article headlines to grab people to open the links. You might add a related video or a related pic or two to get people excited about what you’ve written. Just my opinion, it could bring your website a little bit more interesting.

  10. I hardly leave a response, but i did some searching and wound up here About Dude Where's My Thyroid?. And I actually do have a couple of questions for you if you usually do not mind. Is it simply me or does it look like a few of the remarks come across like they are coming from brain dead people? :-P And, if you are writing at other sites, I’d like to follow everything new you have to post. Would you list of the complete urls of your shared pages like your linkedin profile, Facebook page or twitter feed?

    • Hehe! Well some responses are pretty out there ;-D. But I like knowing that people read the blog ;-D!
      I don’t have any other sites where I talk about my cancer– just the youtube videos I’ve linked to the site. But I will jump back on the blogging wagon soon, as there is some new news about my neck!
      And go ahead and ask away! I’m happy to answer any questions!

  11. Good blog post. I absolutely appreciate this website.
    Thanks!

  12. 22 Kari

    How are you doing now? I’m facing bilateral neck dissection in 8 weeks and am terrified. Your blog has helped me. Thank you – hugs

    • I’m doing ok right now, thanks for asking! I’ll be posting again soon because there has been some new not so great news. There’s a new growth on the left side of my neck, and I will be doing another radioactive iodine treatment and possibly having another operation.
      If you have any questions about the neck dissection, feel free to ask!
      Hugs,
      Hungry

  13. 24 samantha

    Hi and thanks for addressing my question.

    To update on me, I’ve had a surgical consult with one of the doctors at the Cedars/Sinai Thyroid Center and, of course, he just wants to cut. He would do a modified radical neck dissection, preserving my carotid as well as the nerve to my shoulder, he thinks. He said that my cancer is between stage 2 and 3 and that he has no idea if it will just stay that way or become more dangerous as time progresses. He said that I can chose not to have the RAI, but that there are probably thyroid cancer cells coursing through my body right now, whether or not I decide to do the surgery. I had left all of my slides and films and CDs of my neck with the surgeon because he said he wanted “his people” to analyze them, but then could not answer even ONE of the specific questions I asked him about these materials and his office accidentally sent my slides (which I owned and marked as such and went through an entire explanation about) back to the original lab and I had to jump through hoops to get them back. I felt like my wishes and needs were “secondary” to the doctor’s medical “agenda” and that he puts up a good “show” about looking at my specific stuff, but then says whatever he was going to say in the first place. I feel like it was all an “act” to gain my confidence and make me feel like I was getting individualized treatment. Most people put doctors on pedestals and hang on every word. I don’t. I frequently know more than they do about the latest research and it freaks them out when a “patient” tries to speak to them on their level.

    I canceled my appointment with the 2nd Thyroid surgeon (at UCLA) because I predicted it would be more of the same. I will be going for more thyroid blood tests in a couple of months and will see what the results are.

    Since I am more afraid of the treatment and these #@$&% surgeons than I am of the cancer, I have decided to do nothing for now, except eat a healthy diet, exercise and take supplements to boost my immune system. I my mind, “cancer” is nothing more than an abnormal cell that’s gone berserk and is changing the way a person’s body functions, usurping the normal functions and creating havoc. I think that we are all exposed to “cancer” and have these abnormal cells in our bodies at all times, but our immune systems, if strong, keep them in check. So far, I have felt OK and am reticent to do any procedures that will change that. Especially after having read your blog!

    It’s not that I am “patient”. It’s that I’m absolutely terrified! The thought of surgery causes me so much stress that I just shut down and become catatonic, unable to function at all, whenever I think of it. I have no family to take care of me either, so if I get sick from having the surgery, it will be very difficult for me to live.

    You are such a brave girl. To have had to make out a “living will” at your age is harrowing thought. I was glad to read that you have a boyfriend and a family. Having a good support system is of paramount importance when one is sick. I wish you the very best of luck with this new surgery and am hoping to follow your progress back to a healthy state. Thank you again, for your consideration and well-thought out answer to my question.

  14. Thanks designed for sharing such a pleasant opinion, paragraph is fastidious, thats why i have read it entirely

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  17. I had a complete thyroidectomy five days ago. The suspicious nodule that prompted the surgery was confirmed to be cancerous. Fortunately, they believe that was it–no metastasis.

    I found your blog when searching for some specific symptoms I’m having–mainly new swelling, to the point that I’m back to sleeping in the recliner tonight; I feel like I’m choking if I try to lay down in my bed. It’s taking a bit longer to bounce back than I expected, but your experience and some others have reassured me that my experience is pretty normal and not worrisome. Thank you for your detailed descriptions and photos! So helpful!!

    How are you doing now, if it’s not too nosy to ask? I see that you haven’t posted anything new in quite a while.


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