1. Sometimes HCC doesn't produce Thyroglobulin, the tumor markerHoly smokes, how did I forget that little fact?!? All I could think of was, well then the chances of that blip on my right thyroid bed from my last ultrasound looks more and more like it could be thyroid tissue, not scar tissue since my ENDO has my Tg and TgAB at undetectable.... here we go again with more surgery and possibly another round of RAI. CRAP! Yes, a freak out moment that I cried myself to sleep with.
This morning I exchanged some texts messages with Viv. I ended up telling her that I'd consult my ThyCa listserv group and do some internet research before I contacted and/or fired my ENDO about the possibility of my HCC not producing any Tg.
So, I finally got around to Google-ing it. The first article I read is from the Moffitt Cancer & Research Center (http://www.moffitt.org/moffittapps/ccj/v4n1/article1.htm), which states that HCC usually does produce Tg, but it also says some scary stuff like:
"The picture emerging of Hürthle cell carcinoma is that of an aggressive lesion, with a prognosis worse than papillary carcinoma of the thyroid.[20-22] In our series of 14 patients with Hürthle cell carcinoma, four patients have died.[20] Of five patients followed longer than 18 months, four (80%) had recurrence and three (60%) died of Hürthle cell carcinoma. Four of five recurrences were located in the neck, and two of the four deaths were due to locally recurrent disease. The other two deaths were the result of metastatic disease. In the literature, the overall cause-specific mortality rate is 111 patient deaths out of 364 cumulative cases of Hürthle cell carcinoma reported (30% death rate)."
or
"Most recurrences of Hürthle cell carcinoma are found in the neck, while the lung is the most common site of distant metastasis. Palpation of the neck may reveal recurrent disease, while chest x-ray may suggest metastasis. A computed tomography scan or magnetic resonance imaging of the neck, mediastinum, and chest are valuable adjuncts in diagnosis of recurrent disease.
Recurrent disease is treated surgically with good palliation and appreciable prolongation of life often resulting from local excision and neck dissection for recurrent neck disease or pulmonary wedge resection for lung metastasis.[20,25,26] External beam radiation may be considered for patients with unresectable disease but is not curative. Octreotide has also been employed without success in the treatment of recurrent carcinoma.[27] In our series, patients died of Hürthle cell carcinoma an average of 34 months after recurrence.[20]"
20. Grossman RF, Tezelman S, Epstein HD, et al. Total Thyroidectomy and Central Neck Lymph Node Dissection: Treatment of Choice for Hürthle Cell Carcinoma. In: International Congress of Endocrinology. 1996. San Francisco, Calif.
21. Herrera MF, Hay ID, Wu PS, et al. Hürthle cell (oxyphilic) papillary thyroid carcinoma: a variant with more aggressive biologic behavior. World J Surg. 1992;16(4):669-675.
22. DeGroot LJ, Kaplan EL, Shukla MS, et al. Morbidity and mortality in follicular thyroid cancer. J Clin Endocrinol Metab. 1995;80(10):2946-2953.
25. Sloan DA, Vasconez HC, Weeks JA. Mediastinal dissection and reconstruction for recurrent Hürthle cell carcinoma of the thyroid. Head Neck. 1994;16(1):64-71.
26. Levin KE, Clark AH, Duh QY, et al. Reoperative thyroid surgery. Surgery. 1992;111(6):604-609.
27. Zlock DW, Greenspan FS, Clark OH, et al. Octreotide therapy in advanced thyroid cancer. Thyroid. 1994;4(4):427-431.
So, the Tg isn't the problem, it's everything else about HCC that makes it worse, in my head at least. I just need to remain calm until my follow up ultrasound on January 27. I think no matter what the results are, I should still get a second opinion, just to make sure that my ENDO is managing my case adequately.
[Try not to freak out....Try not to freak out......]
Florida, glad to find a current blog on Hurthle Cell Carcinoma.
ReplyDeleteMy husband was recently diagnosed with HCC. It all started with a small viral bug back in September that caused him to have swollen glands. Obviously that was a fluke but its symptoms caused him to be poking around at his neck when he discovered this "Twinkie" sized lump above his clavicle. Now almost 4 months later and a series of tests and two surgeries.... He had a 3.8cm x 4.6cm tumor with significant vascular invasion and partial capsular invasion.
We just met with the Endocrine Dr yesterday to move onto the RAI ablation. The dr. seemed well versed in endo medicine but just didn’t leave me with a confident feeling about treatment as it specifically related to HCC. Any advice?
When were you diagnosed? Looks like you have been at this a while. Did you do LID to prepare for the RAI, assuming so since you were awaiting the LID cookbook. What were your side affects of going off Thyroid med and diet? Did you do the RAI as an outpatient? We have three teenagers in the house and I’m concerned about exposure.
Trying to be positive about this, but admittedly I am scared out of my mind to even think of losing the love of my life.
Thinking about you as you await your appointment on the 27th!!!!
ReplyDeleteKeep the faith, for faith is confidence in what we hope for and assurance about what we do not see!!!!
Hi Momo3. Sorry to hear about your husbands' diagnosis. First of all, you should check the ThyCa.org website. There is a lot of good info there, not specifically for HCC, but it is helpful nevertheless. I am actually a facilitator for the local San Diego ThyCa support group. I encourage you and your husband to attend a meeting if there is one in your town. If not, then please join the listserv. There are a few other HCC survivors on the listserv.
ReplyDeleteI had two surgeries in May 2010. My tumor was 3.2 cm in length. When they went in for the other side, they found three papillary foci, but all at 1mm or less. My HCC tumor was hypervascular, but no capsular invasion; two of the three PT foci were close to the margins.
I had RAI in July. Some uptake in my chest, but a CT scan cleared it as normal for that area.
Yes, I had to do the LID, and will do it again for my 1 yr scan in May this year. ThyCa has a pretty good, free cookbook put together by other ThyCa survivors, on the website. It was hard to stay away from seafood and dairy, but it is required.
Please try to stay as positive as possible. I found that writing about my ThyCa journey on my blog helped me to get through those first couple of months. I took a lot more photos of my neck at the beginning. I still like to go back and look at them to see just how far I have come since last May.