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I can not thank "bunky2078", ' koh", and "deborah1031" enough for taking the time to share the experience and knowledge they gained from their thyroid treatment. I have just received, what I perceived as "the toxicology report". It describes the size and shape of each lobe, the size and shape of the various tumors and nodules they found but uses absolutely no "medical cancer jargon" ( which I believe I would recognize but might not understand) in describing any other finding. It does describe the isthmus as "unremarkable" which is a good thing, and indicates no lymph nodes may be involved. Hopefully (maybe I'm being presumptuous), my oncologist or endocrinologist will call and explain, because I might be all wrong. In any case I deserve an expert to tell me if that is the total report and exactly what it reveals. At this point, I feel as if I am being left in the dark and I don't like it. Some of medical expertise that I need is limited in my area, so that is a complication. I am just going to have to stop and "catch my breath" from this thyroid cancer treatment whirlwind, slow down, get more answers and then decide from that point onward. Thank you all.
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I think slowing down and catching your breath from the cancer whirlwind is a great plan. It is hard to think when you don't have enough information, don't know the lingo, and everything is swirling about. You are learning a new language, the language of medical issues of your thyroid. It is not an easy language to earn, but if you do it a bit at a time it will help you feel more in control of issues that have to be decided. Do you have a patient portal where you could request a call from your surgeon, oncologist, and/or endocrinologist to explain the report? Given what you said in your original post, I would try the surgeon first. He/she sounds very experienced. You also possibly could get a video appointment with the surgeon to get them to explain the report. And you could ask your surgeon for referrals to other endocrinologists more experienced with thyroid cancer and find out if they could see you virtually and go over your report with you (if your insurance will cover that). My cancer is handled by my endocrinologist at this point and he seems much more cautious about RAI from a few years ago.
Would you like the moderator on this forum and/or the forum participants to help you formulate your questions? We would need more information from the report to do so. For example, did they find cancer in the nodules? What type of cancer was it and is that a fast growing or slow growing type. Did they give you a stage for it? Did the surgery get clear margins? Are the size and composition of the tumors risk factors? How about your age? No lymph node involvement and an unremarkable isthmus are super great news. And your voice and your parathyroids were preserved--hurray! I really worried about those before my surgery.
Have you started on levothyroxine treatment yet? How are you feeling? Getting the right dose both to suppress possible remaining cancer cells and for you to feel like your normal self often requires some tinkering.
Keep us posted as you feel comfortable. It's a weird club to be a member of but the shared experience and knowledge are so valuable. A good friend told me, after my diagnosis, that her hairdresser had thyroid cancer thirty! years! ago! and is just! fine! Good to know but not! particularly! useful! for my own journey :).