Should I have more testing or wait like the doctors want???

rockie98
rockie98 Member Posts: 2
edited March 2014 in Thyroid Cancer #1
Hey there, I am new to the boards, but unfortunately not to cancer! I lost my mother last year to stomach cancer and my sister is a breast cancer survivor. A body scan recently found a nodule on my thyroid and they did an ultrasound which confirmed that but they still don't know what it is. Because my blood tests (thyroid) come back fine the doctor wants to "wait and see". I don't know that I am comfortable with that though. I have been feeling lousy for quite some time and even though the blood work says I'm fine, I'm not so sure. They don't know what the nodule is and so that of course makes me nervous. Has anyone had blood tests come back fine and went on to find out it was indeed cancer? Should I be requesting more tests? I don't really care for the doctor that I have been referred to. Any help would be appreciated! Thanks

Comments

  • kaye4
    kaye4 Member Posts: 12
    I had a goiter about a year ago and also "cold nodules". The needle aspiration biopsy was proven beign. We watched it for a year, but I began having difficulty breathing at night, loud snoring, and difficulty in swallowing certain foods, like bread. I had another ultrasound and it showed that the goiter had enlarged alot within six months. That's then when the surgeon decided to remove the right lobe due to the difficulties mentioned earlier. The pathology then came back as thyroid cancer--surprise to all of us.

    You know your body and how you feel. Yes, my blood work was the same as yours--normal. I'm thankful that I had another ultrasound and that I went forward.

    Good luck in your decision.
  • rockie98
    rockie98 Member Posts: 2
    kaye4 said:

    I had a goiter about a year ago and also "cold nodules". The needle aspiration biopsy was proven beign. We watched it for a year, but I began having difficulty breathing at night, loud snoring, and difficulty in swallowing certain foods, like bread. I had another ultrasound and it showed that the goiter had enlarged alot within six months. That's then when the surgeon decided to remove the right lobe due to the difficulties mentioned earlier. The pathology then came back as thyroid cancer--surprise to all of us.

    You know your body and how you feel. Yes, my blood work was the same as yours--normal. I'm thankful that I had another ultrasound and that I went forward.

    Good luck in your decision.

    Thanks for the input. My ultrasound shows a "hypoechoic solid mass inferior to the lower pole on the left side of the thyroid" It is 1.4 x 0.7 cm. They also see "shotty" lymph nodes elsewhere in the neck. I obviously don't want surgery if not needed, but I've heard the needle boipsy is not all that conclusive. I'm still trying to figure out the next step - any other input would be greatly appreciated!
  • Rustifox
    Rustifox Member Posts: 110
    rockie98 said:

    Thanks for the input. My ultrasound shows a "hypoechoic solid mass inferior to the lower pole on the left side of the thyroid" It is 1.4 x 0.7 cm. They also see "shotty" lymph nodes elsewhere in the neck. I obviously don't want surgery if not needed, but I've heard the needle boipsy is not all that conclusive. I'm still trying to figure out the next step - any other input would be greatly appreciated!

    Most of us with thyroid cancer have 'normal' bloodtests, Rockie... that isn't an indicator for us at all (until after a thyroidectomy, then a certain blood test marker can be used.)

    I would suggest you seek a second opinion. It sounds like your doctor is quite conservative - and at the very least, I think I would want to have an I-131 thyroid scan done. Sometimes these nodules will show up as 'hot' or 'cold' on the scan, and, if so, it gives a better idea whether it is functioning thyroid tissue (like a goiter) or more worriesome.

    I would also ask for an 'ultrasound guide FNA' - fine needle aspiration. The largest majority of cancers are papillary, which sometimes appears in the fine needle aspiration, either as diagnostic or suspicious. Either way, if it comes back like that they usually suggest the lobe is removed, for further pathology.

    If it is a follicular cancer, those can only be diagnosed after surgery - to qualify as follicular, the nodule must protrude through the capsule of the thyroid lobe... but that is getting ahead of things.

    Please keep in mind that the VAST majority of these nodules - about 90% of them - are benign. Only about 10% will ever prove to be a concern - but - in my opinion, when in doubt - take it out.

    They thought mine was benign, even during the first surgery... once the pathology came back, it wasn't, so I ended up having to go back about 8 weeks later to have the other half of the thyroid removed. I'd definitely seek a second opinion - and you may want to check out this link for a possible suggestion for a thyroid cancer specializing endo in your area:
    http://www.thyroid-cancer.net/resources/findaspec.php3

    Hope this helps a bit. There is more info and links on my personal web page here on CSN - just search under my member name.
  • FenwayS
    FenwayS Member Posts: 11
    Hi there,

    I agree with the others. You should go with what you feel, you know yourself and your body. I had an ultrasound come back as suspicious for cancer, had a Fine Needle Biopsy come back as positive for Papillary carcinoma, had surgery in July which revealed a 5cm tumor (papillary carcinoma). The cancer had also spread through the lymph system. All the while every blood test administered came back normal. Didn't matter how good I felt or how awful I felt, they always came back normal.

    Get a second opinion, don't wait. It may be fine but it may not be. I think it's better to know. Good luck and good health to you!

    Fen
  • cmolina
    cmolina Member Posts: 6
    I just wanted to agree with everyone else here. I had a doctor that just waited after my tests all came back negative for cancer inlucing a biopsy. After about eight months of tests I decided to see my husband's doctor and he sent me to the ent doctor right away. Within weeks I was in the hospital to remove the supposed benign mass. Because they waited, the cancer wrapped itself around my left vocal cord and they couldn't surgically remove it. When I woke up from surgery, my left vocal was paralyzied and I could not breathe on my own. I had to be put back under for an emergency tracheotomy. I was in ICU for two days. Instead of being out of work for two weeks, I was out for several months. I had to have visiting nurses when I first came home from the hospital. See an ent surgeon right away if you haven't, and if you don't like what he/she has to say, go to another one. I wouldn't wish my experience on anyone.
  • scowlgirl
    scowlgirl Member Posts: 4
    My bloodwork was normal and I had the needle aspiration done after that. I have 5 nodules, the left ones being "suspicious" and the right side benign. The left nods are ventricular and vascular and the only way to determine if cancerous is to have the left side removed. I'm considering removing the whole thing since my largest nod is on the other side, since the left side might come back as cancerous anyway and since I refuse to have another biopsy done and would have to always have the right side monitored in the future. Because my nods were so vascular, it bled into my thyroid and was immensely painful during the aspiration, but my understanding is that condition is uncommon. My gut instinct is to take the whole darn thyroid out. Do you all agree?