Lymphoma survivor seeks thyroid answers

SuperSally
SuperSally Member Posts: 1
edited March 2014 in Thyroid Cancer #1
Hi, my name's Sally and I have Hodgkin Lymphoma. So why am I here at the thyroid section? I'm helping a friend research a possibility of thyroid cancer, and being signed up as a Hodgkins survivor, I thought I'd start here. First off, she went to the doc because she's been on a diet, she's been exercising and she's gained weight. It happens that way sometimes, but she wanted her thyroid checked out, and that's all reasonable and well and good. She's new to the area, so this is the first time she has consulted a PCP. From what I know her blood work came back "normal" but they performed an ultrasound anyway and saw a mass or node or something. She's really not clear on this point and asking her doctor hasn't cleared much up. They biopsied and according to her PCP the results showed that it "was not an inflammation." Now, let me just say that I have a mom who has more problems with her thyroid than anyone I have ever met, she's been on Synthroid for ages, and whenever she had a biopsy it has come back with a clear "benign." I thought it was the point of a thyroid biopsy to determine benign or malignant. But either way, for whatever reason, the PCP has said that they can do as many biopsies as they want, but it's not going to come back determined. She asked if it was an interior or exterior node, and he said they couldn't tell. He's scheduled her for surgery (without bouncing her to an endocrinologist first) but she wants a second opinion, which I think is wise. Can any of you possible shed some light on this confusing situation?

Is it common for there to be nodes of indeterminate origin on a thyroid? Is it possible the thyroid doesn't have a node, or inflammation, and is swollen up anyway?

Should she see an endocrinologist first? I mean, I would think so, but she's scheduled for her first surgical appointment on the 10th. Will the surgeon bounce her to an endocrinologist?

What's the deal with not being able to determine malignancy from the biopsy? That's kinda odd (in my personal cancer experience sort of way).

Replies and references to more material dealing with this stuff would be appreciated.

Comments

  • Rustifox
    Rustifox Member Posts: 110
    #2
    Hi, Sally,
    I'm sorry your friend is going through this (and hope your lymphoma treatment is going well).

    It is highly possible/probable that the nodule cannot be diagnosed until it is removed.

    As an example, follicular thyroid cancer can only be diagnosed surgically; if it has broken through the capsule of the thyroid gland itself, then it it malignant - if not, it is considered benign (a follicular adenoma). Some variants will appear quite benign until removed - so if the biopsy was at all 'suspicious', it is important to follow up with surgery.

    This is a really good site with explanations of these issues in fairly 'laymen' terms:
    http://www.endocrineweb.com/indexpg.html

    Only about 10% of nodules are ever found to be cancerous - the other 90% are benign, but many, many of us were not accurately diagnosed until after the surgeries - in some cases, not even until the final pathology returned on the removed lobes (necessitating a return for a completion thyroidectomy - that's what happened with me). It takes a skilled pathologist with the tumor in hand to detect the cell mutations.

    A second opinion is fine, if she feels that is a good idea - but an Endo is not really of value at this point. What your friend really needs is a very good ENT surgeon/otolaryngologist, with a lot of experience in dealing with thyroidectomies and/or thyroid cancer. The importance of experienced surgeons cannot be stressed enough, as the long term prognosis (normally very positive, by the way) relates directly to the completeness of the surgery, if it is cancerous. There are also very sensitive nerves - an experienced surgeon is less likely to have complications (ie laryngeal nerve paralysis) occur.

    You may want to direct your friend to these resources:
    http://cpmcnet.columbia.edu/dept/thyroid/index.html
    http://www.thyroid-cancer.net/resources/findaspec.php3
    http://www.mdanderson.org/diseases/thyroid/

    Hope some of this is helpful. In most of us, we were completely symptom free, with normal thyroid bloodwork prior to our diagnosis.

    It sounds as if your friend feels she may be suffering from a bit of hypothyroidism, which could indicate a benign process - but it is absolutely best to have this surgically confirmed, and the lump appropriately removed and biopsied.

    It is only when these lumps are cancerous, and are left in place that we see less positive outcomes... thyroid cancer has the ability to mutate, normally slowly, as time passes - and mutation can result in a very deadly form, so it is very likely best to have this taken care of now, with an experienced surgeon.
  • alliesnene
    alliesnene Member Posts: 20
    #3
    Hi Sally,
    This is my 13th year battling thyroid cancer, and I have a much different perspective. Perhaps because my brother in law is an endocrinologist. And before my diagnosis of thyca, I was being treated by him for Grave's Disease. Now, there is a simple blood test of thyroglobulin that is a tumor marker for thyroid cancer. My thyca had an atypical presentation, but if I had known then what I know now, I definitely would have never wasted my time with an ENT! I was very fortunate, and my oncologist/surgeon was the best in Los Angeles. See my webpage here for more info. My surgeon ended up performing 5 surgeries for me over the years, I wasn't left with damage that so many go through. I suggest your friend get the 2nd opinion first!!! Best of luck!
    Jen

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