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Thread: Thyroid Papillary Carcinoma - Just Diagnosed

  1. #1
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    Thyroid Papillary Carcinoma - Just Diagnosed

    I'm 51 years old and live in Michigan.

    This week, I was diagnosed with Papillary Carcinoma. This came as a true surprise, especially having been a 14 year breast cancer survivor.

    Although I'm not upset about being diagnosed with thyroid cancer, my major concern is whether it has metastasized into other parts of my body.

    Two years ago my mom's baby sister died of bone cancer. In 1995, she and I both were diagnosed with breast cancer. Earlier this year, I went to the doctor because I, too, had a concern with having bone cancer as when I sit too long in one position, or when I wake up in the morning and stand, my body hurts all over.

    After the results came back from my needle aspiration biopsy, my Endocrynologist referred me to an Otolaryngolgy surgeon, and I have an appointment tomorrow (10/2) at 10:30am.

    If anyone has any recommendations or advice on questions I should ask, or how they determine whether the cancer has mestastized, please let me know.

    I think I'm in denial right now, and just haven't really wanted to address this or think about it.

    Anyar
    "It takes a deep commitment to change, and an even deeper commitment to grow"

  2. #2
    Hi Anyar:

    I can relate to what you are saying. I was diagnosed with uterine cancer, and this upcoming Tuesday, I have a second biopsy on my thyroid within a 6 month period. Recently a got a lab report which indicates inflammation in my body is 28 times more than it should be, and my bones hurt. But I wonder being that thyroid regulates a great deal of processes, if some of the pain is a result of the lump. If it is cancer, I too, as you are facing now, need to know if cancer is elsewhere. (I am wondering that anyway).

    I would be direct with your primary or oncologist. The fact is, cancer has been found in your thyroid, you need the other areas of your body checked out. In my book, to investigate further is not panicking--it is taking wise steps to your health care. Ask your primary or oncologist for testing. It is not like you never had cancer. I already know my primary will resist-- he is hard hearted, and I was planning Monday to switch him out. Unfortunately being on Medicare and Medicaid, it will be 15 to 45 days before I can schedule with another primary.

    I can understand being in denial. Its a wonder this evil beast would return to afflict you after 14 years--my heart goes out to you. I would call your oncologist, was it through him/her-- or through your endo this was discovered? Have your doctors discussed what your course of treatment will be after your surgery?

    You know, my doctors recently told me I take my diabetes too seriously! What? Is there a map to that? Because I care when my numbers are over 140? My point is we have to care about ourselves--and if I had not hounded the man for a referral to an endo, I would had been oblivious to the fact this lump in my throat warrants further investigation in a big way.

    I advise you to be direct with your primary, oncologist, and if need be your endo. I think your best bet may be the oncologist--maybe a full body MRI and blood tests. Anyar, you will be in my thoughts and prayers. Maybe someone having experience with thyroid cancer will post. Keep us informed on how you are doing.
    rmaureen
    Diagnosed Sept. 2005
    Stage III-C Endometrial Adenocarcinoma
    Grade 2
    My Story:
    http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

  3. #3
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    Rhonda,

    I am so sorry to hear that especially within such a short period.

    I just got home from my doctor appointment. He is the surgeon that my Endocrynologist referred me to. I had over 11 questions to ask him, most of which focused on staging and metastasis. He was kind and very patient and answered them all.

    First, he told me that the cancer is in the very early stages, likely around a Stage 1 but wouldn't now for sure until the thyroid has been removed and tested. Stage 1 was truly a relief to hear.

    At 51 y/o, he also did mention that the cure rate is about 95% for those younger than me, but I'm on the border. He also stated that there is a likelyhood that it could return in the lymph nodes of the thyroid area (although it has been removed), into the chest, the lungs or bones.

    I expressed to him the same concern you have. He told me (and I hope I got this right) that after surgery, I would go on radioactive iodine. A full body scan would then be performed which would show other potential areas where the cancer may have metastasized. He did, however, also mention that I would need a bone scan in addition to the whole body scan because detecting cancer in the bone is very different than that which is done via a whole body scan.

    Like you, I, too, wonder if many of the symptoms are related to my thyroid. An example would be my hair. I've always had somewhat long, thick black hair. Although the length is the same, it is extremely thin. Over the four days alone, I've lost a hand full of hair.

    In 1996, I was also in denial when I had breast cancer. Guess it's natural to be that way. But I felt comfortable with him today, and decided to go ahead and schedule the thyroidectomy on November 5th.

    He told me that the first month, I would not be on medication because of the radioactive iodine. He was honest in saying that I will be a little tired, and possibly a little crazy.

    (MY GOD! CAN I GET ANY CRAZIER? LOL)

    And as far as your diabetes, you should be concerned and worried about your numbers. I think had my doctor said that, I would have immediately started looking for another.

    I'm pretty forthright and agressive in dealing with doctors. They all have respect for me, and if I'm not satisfied with their course of action, I will tell them ... "Well, this is my suggested course of action."

    A good example is my primary doctor who discovered the nodule. I don't really care for him. So when I receive my lab results from any tests, I analyze them myself. I then take them with me on my follow-up visits, and tell him the course of action I would like to see. I must say that he's pretty impressed with my ability, and often suggests I should have gone to medical school! LOL

    When I received the results from my thyroid scan, I immediately bypassed him, researched some of the best Endocrynologists in Michigan, and made an appointment directly. Thank goodness my insurance allows me to do so.

    Rhonda, thanks for listening. And I definitely hope we continue to communicate as I would like to know your progress, as well.
    "It takes a deep commitment to change, and an even deeper commitment to grow"

  4. #4
    Hi Anyar,

    It appears you got things well under control! Maybe I need to bring you with me to my upcoming appointments--. Thank God, it appears they have caught this cancer early. Your endo seems like an excellent doctor. A full body scan and a bone scan seems prudent in your case, and I am glad you will get the answers you need. My endo is already suggesting radioactive iodine, but I want a diagnosis first. If it is not necessary, and there is no cancer, why do it?

    I too have been losing hair, it was very long and now it has thinned out. This started before a craniotomy I had in January, then stopped... but two weeks ago it started again. Metofrmin can also cause hair to fall out in some people, but this does not explain my initial hair loss before the surgery.

    Thank goodness you have great insurance. It can really make a difference.

    Anyar, I hope we do continue to communicate and I have enjoyed "talking" with you. I have a thyroid uptake scan on Tuesday and Wednesday as well as a sleep study. I was schedule for a calcium scoring test too, but my insurance only covered part of it, that must be delayed for now. Next week I see my neurosurgeon, and so forth and so on (sigh). It seems to be a feast and famine scenario when it comes to appointments. Hopefully a reprieve will come soon.

    Let me know how things are coming along, and I will be praying for a successful surgery and outcome. Your news is very encouraging as it looks like stage 1 and from what I have read, it is a more treatable type of cancer. Keep in touch, and take care for now.
    rmaureen
    Diagnosed Sept. 2005
    Stage III-C Endometrial Adenocarcinoma
    Grade 2
    My Story:
    http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

  5. #5
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    Southfield, Michigan
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    Rhonda,

    That's funny because everyone wants me to go to the doctors with them. My mom won't go unless I go with her, but I'd rather go with her because she's very mild mannered when dealing with doctors whereas I'm a little more aggressive and inquisitive.

    This is my feeling about doctors ...

    There are doctors who are simply in the business of making money, and there are doctors who truly care and will try to provide the right treatment. It's often hard trying to tell the difference between the two. And it breaks my heart to think there are doctors like that.

    I go to Henry Ford Hospital in Detroit, MI, which is also a teaching hospital. And for that reason, I have reservations with everything they tell me. And, as unethical as it may sound, I truly believe that doctors/hospitals will sometimes perform unnecessary procedures simply for profit, especially during economic times like these when hospitals are laying off workers. Living in Michigan, we have felt this very deeply as I've been unemployed since February.

    You have Endometrial Adenocarcinoma, Stage III. I'm not sure what the "C" stands for or the "Grade 2" but my question is ... are you still dealing with this, have you concluded treatments and, if so, where do you stand? And you also had a craniotomy. That's an awful lot to go through, and may God Bless you.

    The reason I'm asking is that the inflammation could be coming from that along with your thyroid problem. But if the uterine cancer has been concluded, then the inflammation is likely your thyroid.

    But I agree. Let them do the biopsy then give you a diagnosis. From what I've been reading about RAI, I'm not very comfortable with it but when can we do?

    Please keep me posted about your biopsy results. I'm done with doctors for now, until surgery on Nov 5th, but this forum notifies me of any posts so please keep me posted.

    God Bless You, Rhonda.
    "It takes a deep commitment to change, and an even deeper commitment to grow"

  6. #6
    Hi Anyar,

    I so agree with your perspective on doctors and hospitals. I also go to a teaching clinic, my primary doctors are internists which come and go without notice. In 4 years I have had 3 different ones assigned to me. The only constant has been my oncologist. A few times, some have told me erroneous information--not considering the totality of my medical problems. It's been a rough time: in 4 years after finding out about the cancer: I have been diagnosed with Trigeminal Neuralgia, have had 4 cerebrospinal fluid leaks with 3 accompanying surgeries, was diagnosed with diabetes in May, osteopenia as a result of radiation to the pelvis, chronic insomnia, high blood pressure, neuropathy, neurological muscle problems---now the violins! I am however, one tough cookie--at least most of the time.

    At times I feel like a guinea pig in a lab, inside a small room with 1 to 2 students (in addition to the nurse and internist) looking on as my legs are hoisted in stirrups. I find these exams embarrassing, but what choice do I have? Sometimes I detect contempt towards me from workers and condescension from the internists. I think some view me as a "problem patient", because like you, I ask questions and make them earn their keep. LOL. There is sadly, a stereotype when some clinicians deal with the poor and uninsured. My primary insisted I drank alcohol, when I told him 3 times I did not.

    Yes, there are two types of doctors as you wrote. There are some who do care, my first radiation oncologist was one. I was employed yet uninsured, financially incapable of starting my radiation treatments. She came to bat for me, and made sure I got the testing I needed for the two years I saw her. Then she resigned.

    Then there are the heartless, and money hungry ones. My mind envisions an assembly line loaded with patients, and when the patient gets to the end of the assembly line someone says "insurance card please". The patient must answer "yes" or "no". "Yes" brings you to another assembly line, and "no" brings you to a dumpster. But even having insurance cannot promise a person quality care.

    Concerning the uterine cancer, I am cancer free and all exams indcicate healthy tissue in that area. My gynecologist speculated at the time I was diagnosed, in another 6 months it would had been likely terminal. The tumor was spotted during my hysterectomy, and cancer had already spread into the cervix. It was graded as 2, which is moderately aggressive cancer. It did hit my para-arotic lymph node which caused my upper abdomen to be radiated too.

    According to the ACS: Stage IIIC: The cancer has spread to lymph nodes near the uterus (pelvic and/or para-aortic lymph nodes) but not to distant sites.

    I have however, a constant pain on my lower left side, and early November, I am scheduled for my first colonoscopy. My oncologist informed me there is increased likelihood of developing colon or lung cancer when a person is diagnosed with uterine cancer. My chest exams have all been clear and are on an yearly basis, but lately my left breast, and rib underneath are having stabbing pains.

    I know there is a link between breast and bone cancer. I am so glad you will get that bone scan--it seems to me it should be done routinely for all those with breast cancer. How is your mom doing? What a terrible period for the both of you!

    I was just watching a news report on Detroit the other day, unemployment is over 15% it said. Thank goodness you have insurance. I wonder why delay your surgery however, I have a feeling you will be just fine when this is all through. I hope you get to feeling better. Maybe after the surgery your body pain will go, as the thyroid regulates so much in our body. You have probably already read this from ACS on thyroid cancer and radioactive iodine, but I want to post this link anyway, being others out there may be interested. Meanwhile come back, talk and visit anytime Anyar! I didn't intend to just ramble on with my problems, its time for my second cup of coffee.

    http://www.cancer.org/docroot/CRI/co....asp?sitearea=
    rmaureen
    Diagnosed Sept. 2005
    Stage III-C Endometrial Adenocarcinoma
    Grade 2
    My Story:
    http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

 

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