My Thyroid Cancer Journey, part 2

Micrograph showing that the papillae in papill...

Micrograph showing that the papillae in papillary thyroid carcinoma are composed of cuboidal cells. H&E stain. (Photo credit: Wikipedia)

To continue from yesterday’s post, I had my thyroid out on March 7, 2007 because of papillary thyroid cancer that was confirmed the month prior.

March 25, 2007: Radioactive Iodine treatment day. Two days earlier I sent Scott and the kids away in the motor home to start vacation and to leave me alone, as the radioactive iodine treatment could make me be dangerous to the kids and their developing thyroids. The taking of the pill itself was no big deal, just weird. The pill comes in this big, iron box. The tech opens the bottle, careful not to touch the pill, and drops it in my hand and then the tech scurries behind protective glass and watches me swallow the pill. Then I’m sent on my merry way. I have to take precautions with my “waste”: flush twice, use only one set of dishes/cups that can be disposed of later, bedding has to be bagged for 2 weeks before washing, avoid close contact with people for 5 days. My only side effect was my salivary glands got very swollen and sore. It wasn’t horrible. I missed my family very, very much, so I spent a good amount of time in a depressive sleep.

April-September 2007: This was a very trying time for me as I adjusted to life without a thyroid trying to get my dose of thyroid medication right for me. I was so tired and so depressed all the time. Being hypothyroid was no joke. Thyroid medicine takes awhile to build up in your system… weeks, in fact, up to 6 weeks. My doctor was tired of hearing from me. I did blood tests every 3-4 weeks and my TSH just wouldn’t come down into the normal range. At one point, after months of being on a lot of thyroid medicine, my blood TSH was 137!! (The normal range is 2-12. My normal range for cancer suppression is under 2. And when I doing tests that call for my levels to be elevated, they just want them to be above 50.) So finally, after being on mega–doses of generic brand medicine, my doctor suggested I try name-brand Synthroid. A month after I switched, I started to feel normal again. I was told to only take name brand from now on.

September 2007 and March 2008: I have a nuclear thyroid scans to check if any cancer can be detected. It comes back negative.

August 2008: We have moved back to California and I am newly pregnant with my third baby. Early pregnancy sends my thyroid levels crazy. I feel horribly hypothyroid and none of my new doctors listen to me (they write it off as just normal early pregnancy symptoms) until my blood tests come back at 12.9. High TSH in early pregnancy can cause miscarriage. They pay attention now. I get a new endocrinologist who I like a trust a lot. She doesn’t really like that as a new post-cancer patient she can’t run her own tests on me because of my pregnancy, but she makes due and actually calls my Colorado doctor to get some information clarified. I love that she did that, especially considering how difficult my Colorado doctor was to get time with.

Februrary 2009:  Easton is born. After the initial pregnancy wonky-ness, my thyroid gives me no trouble.

Summer 2009: My blood levels start to concern my endocrinologist because the one they use as a thyroid cancer marker has been steadily rising. Because I am breastfeeding, I cannot do any of the nuclear tests. She has me do a CT scan instead. My thyroid area looks fine, but the CT scan picks up an abnormal sized thymus (some random gland that usually atrophies in adults). It would be exceedingly rare for it to be anything, but my doctor is concerned because it is such an odd thing to be enlarged. It ends up being nothing but causing a lot of drama and stress for me.

March 2010: I am finished breastfeeding and my doctor really wants me to do another Radioactive Iodine treatment. She is just concerned that my levels have continued to rise. She really wants to do a treatment to “knock it down” and keep me at a better baseline.

June 2010: Second Radioactive Iodine treatment. This time, because I have a baby, my doctor admits me to the hospital for three days so I don’t risk hurting his thyroid. After the 3 days in the hospital, I stay another 5 days at my parents house. That was a lonely time too.

August 2010: My levels did not drop at all and my doctor does not know why. She orders an MRI. It is negative. She is confident that I don’t have “bulk disease” (aka tumors) and that it is probably just my baseline. They can never get 100% of the thyroid removed from surgery and the RAI is supposed to kill any remaining thyroid. The tests they use as a “cancer marker” (thyroglobulin) is actually just testing how much thyroid you have at all, because the unique thing about thyroid cancer is that is typically only can regrow on thyroid tissue. And since some parts of your thyroid can regenerate, they like to use the RAI to zap it back down. Unfortunately, too many RAI treatments increase your risk for other cancers. After this last treatment got no results, I made the decision to not do another RAI unless there is more evidence that the cancer is back, not just microscopic thyroid tissue.

2011:  Everything is stable thyroid-wise. Just blood tests are done and 6 month doctor visits.

February – October 2012: Pregnancy number 4. Thyroid is completely normal this pregnancy. No trouble at all.

December 2012: At my regular endocrinologist appointment, she notices (via ultrasound) that one of my lymph nodes seems enlarged. This is the first time that she tells me that because of my age at diagnosis, she expects that my thyroid cancer will return at least once more in the span of my life. She also said the most likely way that will happen will be through it spreading to my lymph nodes. I do a bunch more tests (more ultrasounds and an MRI). She consults with Ear Nose and Throat doctor. It definitely is enlarged, but not alarmingly so. We are going to wait and watch. If it continues to grow, I will have a complicated surgery to remove the entire chain of lymph nodes. I REALLY do not want this.

Current: As of now, everything remains stable with my blood levels and lymph node size. I am very grateful for that. The best thing about thyroid cancer is how slow growing it is. So that is in my favor. I just hate how just when I forget that I ever had thyroid cancer, I get news that brings me back to reality. Will this kill me? Probably not. I see my friend who has a horrible cancer and what she has been through, and I consider myself so very lucky. But I, of course, wish that I didn’t have this either.



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