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Ojttocs
Ojttocs Member Posts: 24

Here's another blog post regarding my progression...and progress.

https://cancertravels.blogspot.com/2017/02/updates...


Comments

  • zarovka
    zarovka Member Posts: 3,607
    edited February 2017

    Thank you for this. I read your blog post and i have book marked your blog.

    I noticed that you have latent cancer of the thyroid. I have a hot spot in my thyroid that I am trying to ignore. My endocrinologist is with me on this and we are watching and waiting. Would you share how your thyroid malignancy was diagnosed and how you treat it?

    >Z<

  • Ojttocs
    Ojttocs Member Posts: 24
    edited March 2017

    I had enjoyed 17 years of NED (no evidence of disease) following my first round of BC. But I was taking bisphosphonates, and I began to have unexplained jaw pain. I had a year where I got many, many x-rays of my teeth. (And never actually found out the source of the pain.)

    In 2012, I found a bump on one side of my neck. I had it fine needle biopsied. It was malignant. In surgery, we learned that both sides had small tumors and the whole thing came out. (Sometimes they can take half and leave half.) I also had a neck dissection with several lymph nodes involved as well. They rated me as stage 3, but mostly due to my age. I was treated with RAI, but one or two odd-shaped lymph nodes remain. I've been very quiet since that time. You can see why the doctors would want to supress any latent disease. It's almost certainly there.

    It really is a teeter-totter. Treat one, aggravate the other.

    If you do have yours out, I have a ton of information and resources and I can get you in touch with some smart folks. For some reason, thyroid cancer is unlike any other, and has its own special fun. Best to you; with luck, nothing will happen. I'm told that keeping your iodine up may help -- we don't get as much iodine from food sources like we used to, so stay aware of that.


  • zarovka
    zarovka Member Posts: 3,607
    edited March 2017

    Thank you very much. Right now I just have something small but suspicious for malignancy. It seems stable from scan to scan, which suggests it is not cancer. But i need to pull the string every now and then to have someone confirm that.

    >Z<

  • Ojttocs
    Ojttocs Member Posts: 24
    edited March 2017

    As a rule, they say don't treat it if it isn't a problem. I think at one time, they'd have advised you differently. The thinking right now is the medical community was too quick to pull the thyroid sometimes. Many never have any issue at all.

    On the other hand, mine needed to go. I just wish I could find that perfect balance if replacement hormone.

    Stay stable! And wear thyroid collars at the dentist! I never heard the term until it was too late.


  • zarovka
    zarovka Member Posts: 3,607
    edited March 2017

    I have never heard of a thyroid collar before ... but now I see. Will protect my thyroid from here on on out.

    Thank you so much for your perspective. I see that the wait and see approach is reasonable. But I do need to monitor the thyroid. Do you monitor by PET, CT or ultrasound?

    >Z<

  • Ojttocs
    Ojttocs Member Posts: 24
    edited April 2017

    If you have had cancer, they have another method called scintigraphy. It's pretty interesting (you hold still while a radioiodine-sensitive platen passes over) but not difficult or painful in any way. I need to diet ahead of time. They also watch with my CT scans, and the radiologist reviews the areas we are concerned about with every scan. They also monitor blood intensively when you've had cancer. They take my blood regularly both to regulate meds and to watch for antigens. Your doctor will probably first check your blood, probably a TSH. (Thyroid Stimulating Hormone -- it indicates whether you are making enough or too much hormone.) Your doc will feel for nodules as well.

    To be clear, no one is saying that one led to another, more like they are in apposition. I may have had some likelihood with my genes, and I received radiation back in the 90s. After a series of unprotected dental x-rays in 2010-11, I developed a new primary cancer of the thyroid. I had that out, and used and still use synthetic thyroid hormones. Then the breast cancer I had fought and thought I won recurred on the very spot I had had the lumpectomy -- millimeters from the clip the doctor left behind. So, back and forth...Let's hope I'm able to teeter totter for years. That's the plan.

  • zarovka
    zarovka Member Posts: 3,607
    edited April 2017

    Thank you Ojttoc. More things to look up and study. Might check back in later with questions.

    >Z<

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