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Anyone else with thyroid cancer too?

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  • tb90
    tb90 Member Posts: 284
    edited November 2018
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    Thanks Momand2kids: I find myself living in two worlds right now. One where family and friends are devastated with my second cancer dx and one where I feel so thankful to have two such manageable cancers. I chose to spend as much time as possible in the latter but still get real pissed too.

  • marijen
    marijen Member Posts: 2,181
    edited November 2018
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    I have two thyroid nodules being watched. They turned up on a pet scan after radiation. One is one cm but covered in calcification. The other has a lot of vascularity but only 4mm. My Endo says there is no correlation between thyroid cancer and BC, but I forget why. I have been told my thyroid is dead by one Endo, the other says it’s thinning. I am wondering if when thyroid is removed how high a dosage of levothyroxine do they put you on? At 75 mcg right now.


  • tb90
    tb90 Member Posts: 284
    edited November 2018
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    Hi Marijen; My endo claims there is a correlation and my recent literature review support this also. But what is strange is that it does not necessarily relate to having radiation. I do not know the answer to dosages of Rx. But may know soon. Meet my endo tomorrow about treatment.

  • marijen
    marijen Member Posts: 2,181
    edited November 2018
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    Thanks TB90, I’ll look forward to hear about your treatment. Do you by any chance have any pain in your neck? I do.


  • marijen
    marijen Member Posts: 2,181
    edited December 2018
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    So thyroid doc today Asked him why I don’t get the full panel of thyroid tests and his reply - I don’tknow the answer to your questions. WTF?

  • tb90
    tb90 Member Posts: 284
    edited December 2018
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    Marijen. Your dr should know. Do you have an option to get a second opinion. So frustrating! My endo wants me to have my thyroid removed. Meeting with the surgeon in the New Year. He was very reassuring about the outlook, but I worry about more radiation ( iodized radiation treatment) after radiation for BC. I will be glowing in the dark. Arghh

  • marijen
    marijen Member Posts: 2,181
    edited December 2018
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    Yes TB I am perplexed by this. I told him I have so many symptoms of low thyroid and they are still there with my levothyroxine treatment. He says well they could be thyroid or something else. Come back in a year. So useless! I am thinking about seeing someone else. Endos are hard to cone by in my area.

    I would not want my thyroid removed. Does that mean you have thyroid cancer for sure? Try to research as much as you can before the thyroid surgeon. I have an article from Cure mag I will find for you.

  • marijen
    marijen Member Posts: 2,181
    edited December 2018
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  • tb90
    tb90 Member Posts: 284
    edited December 2018
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    Marijen: Awesome article. I have two tirads 5 modules but came back indeterminate. As do one third. Wonder why such a high rate of uncertain for thyroid biopsies?? Endo feels I am very high risk still and wants thyroid removed. I would jump at this but he indicated that after thyroid removal, I will receive iodinized radiation. I do NOT want more shit in my body. Waiting for surgical consult in Nee Year. Your thoughts?

  • marijen
    marijen Member Posts: 2,181
    edited December 2018
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    I think go real slow on this turn of events and definitely get a second opinion. Before I got BC I thought surgery was a piece of cake. Now I am leary of more damage to my body of any kind, radiation included. I really feel that doctors have little care for the after effects. That’s off of the top of my head. Maybe tomorrow I will have more to offer.


  • Law828
    Law828 Member Posts: 9
    edited December 2018
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    My pet scans continue to lite-up in the thyroid area (both sides). My surgeon had said that she found more women coming up with thyroid cancer after breast cancer. So I keep getting ultra sounds and biopsy along with bloodwork and all comes out good.

  • marijen
    marijen Member Posts: 2,181
    edited December 2018
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    Hi Law, thanks for joining us. I did not know you can have more than one biopsy. Thx. TB, if it's indeterminate I would not want to have it removed unless it is certain and they have a very good argument. Why can't they just remove the nodules first and do a pathology? I wonder.


  • tb90
    tb90 Member Posts: 284
    edited December 2018
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    they do not do lumpectomies on the thyroid. Too bad it's not an option. They do at times remove half the thyroid. I am going to look into all options as there is time and I certainly do not feel the sense of urgency I had with BC.

  • marijen
    marijen Member Posts: 2,181
    edited December 2018
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    Surgery for thyroid cancer

    There are a few different types of surgeries that may be used to treat thyroid cancer.

    • Lobectomy: For small, well differentiated tumors that have not spread beyond the thyroid gland, a lobectomy may sometimes be performed. In this type of thyroid cancer surgery, the lobe containing the cancer is removed, leaving the other healthy lobe behind. This can reduce the need to take thyroid hormone treatment after surgery, since a functioning part of the thyroid remains.
    • Thyroidectomy: In this procedure, most or all of the thyroid gland is removed by surgery (total, near-total or subtotal thyroidectomy). This type of surgery for thyroid cancer is used for most patients. However, because very little or no functioning thyroid tissue is left behind, patients will need to take daily thyroid hormone replacement pills afterwards.
    • Lymph node removal: When the surgeon suspects that the thyroid cancer cells have spread to nearby lymph nodes, they will remove the enlarged or suspicious nodes in order to remove as much of the cancer as possible. This thyroid cancer surgical procedure is usually performed at the same time as the surgery on the primary tumor.
    Found at cancercenter.co
  • tb90
    tb90 Member Posts: 284
    edited December 2018
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    Yes they do lobectomy but not lumpectomy. They do not simply take out the nodule with a margin, but half the thyroid. Going for a second opinion. Thanks for your response!

  • woodstock99
    woodstock99 Member Posts: 80
    edited May 2022
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    I have a 3.24 nodule (have had since 2003 previously biopsied benign but was smaller) and had FNA last month which was indeterminate and Afirna test which was suspicious 50/50 benign or not. I have been on synthroid since 2008.

    Endo sent me to surgeon who I saw yesterday and both recommend partial removal. I am so distraught and feel like I am falling down the rabbit hole.

    I am about to hit my 3 year NED on Saturday and am so depressed about this and possibility of the “c” diagnosis and this process with this and another lifelong change.

    Everything I read is so negative about what’s happens to you and i am terrified about RAI if needed. I feel poisoned and hard to stay positive.

    I know about all the things surgeon didn’t tell me about post-bmx life and the pain and discomfort I still have and lymphedema risk and I fear same with this surgery.

    Sorry just angry and upset right now and not even sure about the point of a second opinion. Anyone have this? And of course endo and surgeon say no connection between the two. 🥵🥵🥵

    Thanks in advance.

  • ceanna
    ceanna Member Posts: 3,120
    edited January 2019
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    Woodstock, sorry for your need for surgery. Mine was in reverse order--first thyroidectomy, then BC almost 5 years later. Yes, I'm told also there is supposedly no connection between the two, just the incident percentages can overlap. No surgery is a pleasant walk in the park, but thyroid surgery is do-able. I don't know how medical advances have changed since 2010 when I had my total thyroid out (indeterminate FNB but turned out to be cancerous), but follow up RAI may depend on your pathology. I did have RAI and no problems with it. Since you are already on synthroid, that will not change--just probably the amount you take per day. Only your surgeon can address the lymph node issue and whether or not they will need to test or remove any for you--I did not have any taken out so no problem there for me. You may want another opinion before you decide, and double check the specialty areas of the surgeon--how many thyroidectomies do they do per year/month? You want someone with lots of experience! If you have any questions, please ask. All the best. Ceanna

  • tb90
    tb90 Member Posts: 284
    edited January 2019
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    Woodstock: I completely get it. Especially the inability to dx cancer yet still recommending surgery. To be honest, the surgery does not scare me as much as the possibility of having RAI. Thyroid cancer is treatable, but the odds of another cancer, especially cancer of salivary glands goes way up. You did not have previous radiation as I had. RAI presents a real risk to me. And now I just discovered that after more than 6 weeks, my endo still has not requested surgeon consultation. I do believe this is doable but not what we want to do. I have been researching everything. Lots of questions for surgeon. If you can get away with just a partial thyroidectomy and nothing further, that will be terrific. Well, terrific compared to alternatives. Keep in touch. Sorry this is happening to both of us

  • marijen
    marijen Member Posts: 2,181
    edited February 2019
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    November 9, 2018

    Genetic Test Helps Identify Benign vs Malignant Thyroid Nodule

    HealthDay News — A multigene genomic classifier (GC) test for thyroid nodules with indeterminate cytology shows high sensitivity and negative predictive value, according to a study published online Nov. 8 in JAMA Oncology.

    David L. Steward, MD, from the University of Cincinnati Medical Center, and colleagues conducted a prospective study at 10 medical centers to determine the diagnostic accuracy of a GC test (ThyroSeq v3) for cytologically indeterminate thyroid nodules. A total of 256 patients with 286 nodules met the eligibility criteria; central pathology review was performed on 274 nodules.

    The researchers found that 72% of the 286 nodules were benign, 24% were malignant, and 4% were noninvasive follicular thyroid neoplasms with papillary-like nuclei (NIFTP). Overall, 257 nodules (154 Bethesda III, 93 Bethesda IV, and 10 Bethesda V) had informative GC analysis; 61 and 39% were classified as negative and positive, respectively. The test demonstrated a 94% sensitivity and 82% specificity in Bethesda III and IV nodules. The negative predictive value was 97%, and the positive predictive value was 66% with a cancer/NIFTP prevalence of 28%. The 3% false-negative rate was comparable to that of benign cytology.

    "Beyond simply differentiating benign and malignant nodules, the study shows that ThyroSeq also provides a detailed genetic profile of the positive nodules," Steward said in a statement. "ThyroSeq potentially allows physicians to employ a precision medicine approach, modifying treatment for each patient based on the mutations present."

    Related Articles

    The University of Pittsburgh Medical Center granted CBLPath Inc. a license to market ThyroSeq for commercial use.

    Abstract/Full Text

    TOPICS:

    ENDOCRINOLO

  • rondeezee
    rondeezee Member Posts: 16
    edited March 2019
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    Good Evening All,

    I was diagnosed with IDC/DCIS in Mar 2018 and was subsequently had a bilateral mastectomy and DIEP flap reconstruction. I am ER/PR+ and HER-. No node involvement and I am currently on Letrozole. I have recovered remarkably well but I have recently challenged with lab results, in particular, my blood calcium level has been 10.4 for the past 9 months. My pre op work up included a full PET/ CT and there was no evidence of metastasis, but’s it did reveal an enlarged lobe on my left thyroid but no FDG uptake. Fast forward to last week, I went to see an endocrinologist and he ordered a thyroid ultrasoundand blood work. The ultrasound resulted two nodules, 2.8cm and 2.4cm. The largest nodule was rated TRads 2 and the smaller nodule was rated TRads 5 and is described as being in the mid left thyroid gland, 2.4 x 2.3 x 2.0 cm in size, mixed cystic and solid, hypoechoic, taller than wide, smoothly marginated, with a small internal echogenic focus. I am so scared that this is thyroid cancer and I am freaking out! Scheduling a FNA biopsy on tomorrow. Has anyone had a similar ultrasound report and it turned out not to be cancer? Need to hear about good outcomes.

    Thank you.

  • tb90
    tb90 Member Posts: 284
    edited March 2019
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    Rondeezee: You have almost the exact dx I had except I had a Tirads 4 and a Tirads 5. After biopsying both, the results were indeterminate and the other was benign. Thyroid is perhaps the only biopsy that cannot determine malignancy. Almost one third of the biopsies are indeterminant. Both my endocrinologist and surgeon still highly recommended a full thyroidectomy. I had it four weeks ago. The results were benign. So yes, it definitely can be benign. I am in synthetic hormones and I cannot tell any difference at all. The surgery was easy. I wish I still had my thyroid, but I am so relieved to not have cancer or any SE's, that I dare not complain. Even if it is cancer, thyroid cancer has one of the highest cure rates. So breath and take one step at a time. Ask any other questions. I just went through this and researched it to death. You will be fine.

  • rondeezee
    rondeezee Member Posts: 16
    edited March 2019
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    TB90: Thank you so much for your response.Your words are reassuring. I was just feeling like I was ready to move on with life and this happened. I hate this disease and the PTSD it causes. 2018 was a rough year for me and after going through BC treatment, I have so many fun things planned for this spring and summer to include getting married in Cancun in June. Trying to wear a straight face but it is so hard. I have not told my fiancé about my latest ordeal because I don't want him to worry. The ultrasound term that is most worrisome to me is “taller than wider". It is the exact description used to describe my BC nodule and it turned out to be cancer. Please keep me in prayer

  • ceanna
    ceanna Member Posts: 3,120
    edited March 2019
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    Rondeezee, maybe by now you've had the biopsy and waiting for results. Unfortunately, like TB90 said, the results are often indeterminate. Mine were, and I had thyroid surgery in 2010. Only your endocrinologist can help you determine what to do from results.

    I'm wondering, though, because you mention high blood calcium test results if your endo has looked in possible parathyroid problems. Everyone has four parathyroid glands behind the thyroid and they regulate calcium levels. Thyroid and parathyroid are located in the same area but totally separate. I, too, went for years with higher than normal calcium levels, and also erratic PTH levels (parathyroid hormone). Please ask your endo about this and see if that could be the reasons behind the nodules. Parathyroid problems are rarely cancerous and after having one of my parathyroids removed last summer, I have had normal calcium levels.


  • rondeezee
    rondeezee Member Posts: 16
    edited March 2019
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    Hi Ceanna,


    Thank you for your response. My endocrinology work was focused on the parathyroid and the thyroid nodule just popped. My labs were drawn last Tuesday but I’ve yet to receive the results. Interesting that my ultrasound report did not reference anything about my parathyroids

  • ceanna
    ceanna Member Posts: 3,120
    edited March 2019
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    Rondeezee, hope you get results soon and can uncover the cause of the nodule. I remember with parathyroid problems, they don't always show on an ultrasound because they are behind or embedded in the thyroid. Years after my thyroid was removed, a nodule showed in that area which turned out to be a parathyroid adenoma. Don't let them ignore the high calcium levels though. I had an endo who ignored my high levels for a few years and I ended up with osteopenia and minor kidney test problems. I've had both thyroid and parathyroid surgery--8 years apart with BC in-between! You might be interested in reading one of the threads focusing on parathyroid and calcium questions https://community.breastcancer.org/forum/96/topics/784308 Please let us know how your biopsy turns out and all the best for test results.

  • tb90
    tb90 Member Posts: 284
    edited March 2019
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    My ultrasound results scored a 9 for the Tirads 5 which basically guaranteed it would be cancer. But it wasn't. After having had BC, I just could not bear another. My endocrinologist made it out to be nothing like BC and assured me if it was, he would deal with it and I had nothing to worry about. It isn't quite that simple or easy, but your treatment, if cancer, will not be urgent and you will not die from this. Plan your wedding and know you have a beautiful future ahead with your partner. There will be no need to interrupt your plans and no need to worry either your partner or yourself. Please stay in touch here. Together, we will support you through this.

  • tb90
    tb90 Member Posts: 284
    edited March 2019
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    Parathyroids should be left in place even after thyroidectomy and are really a separate entity from thyroid nodules and issues. They can cause symptoms but not related to nodules. The greatest risk is that they can be damaged by surgery. All four of mine remained intact. And no post surgery SE's as a result.

  • rondeezee
    rondeezee Member Posts: 16
    edited March 2019
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    TB90: My ultrasound report scored 9 as well and this is why I am so scared. When I spoke with my endocrinologist, he didn’t sound too alarmed and tried to console me by stating that 90% of thyroid nodules are benign, but given my history of BC, he thought that the nodule should be biopsied. After reading through the description of the nodule, the most concerning feature is “taller than wider”. My exam lasted all of 15 minutes and I kept telling myself “if it is glaring cancer, the radiologist will come in to the exam room to examine my thyroid to make sure that the images were clear and not questionable”. This is exactly what happened when I was being worked up for BC.

    I called to schedule my FNA today, and was told that the interventionist had to review my ultrasound then I would be called to schedule an appointment. I am feeling much better today and the reassurance I am getting from you and Ceanna is very comforting. I will remain in touch to let you know how things are progressing and I will also apprise you of the results of my biopsy. I am hoping for the best, but bracing for the worst, and I know that if I have to, I will climb this hill just like I’ve had to climb many others

  • rondeezee
    rondeezee Member Posts: 16
    edited March 2019
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    Ceanna: thank you for the referral to the boards that talk about parathyroid and calcium. I had my first dexascan last year and it did result osteopenia in my left hip and lower spine. Last year, was the first time my labs resulted elevated blood calcium. Prior to that, my labs resulted low Vitamin D, which subsequently resolved after taking supplements. Once I know what’s going on with my thyroid, I will be interested in learning what my endocrinologist will recommend to further protect my bones as I am currently taking Letrozole.

  • mudd
    mudd Member Posts: 27
    edited April 2019
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    What are the symptoms of thyroid cancer? I'm one year out from finishing chemo for breast cancer and the past week I've have a tightness around my neck like I'm a wearing a turtle neck that doesn't fit. My internist felt my neck and said there was no swelling or lumps or lymph node swelling and said it could be anxiety. Are these symptoms of cance? I'm in a panic and trying to get an appointment with the oncologist or is that crazy. At my last visit a month ago he said everything felt ok and all the thyroid tests were normal. Anyone every have this/