gilbertgurl (gilbertgurl) wrote in thyca,
gilbertgurl
gilbertgurl
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First Post Here - Papillary Thyroid Cancer - Frustrated

Just wanted to say hello - was recently diagnosed w/papillary thyroid cancer. I'm Post Op of a total thyroidectomy by 9 days. What now? I have follow-up appts next week but honestly, I feel like none of my healthcare providers are giving me ANY info what-so-ever. So far I've seen the endocrine twice prior to surgery, my surgeon twice and THAT'S IT. When I ask questions or call with extremely high blood pressures, etc, they all pass me on to someone else. It's extremely frustrating and I feel like I'm getting no where.

I'm not even sure as to what questions I SHOULD be asking. Any ideas or suggestions as to how I can get my docs to take my individual concerns/symptoms seriously? Anyone else exasperated with how they have been treated by their MDs?? Argh, their arrogance is killing meeeee!!!
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I'm brand new to this blogging thing and I have no idea if I'm doing it right. The best suggestion that I have for you is to log onto thyca.org

You will find an amazing amount of information and you can join thyca's online support group. You will learn everything you need to know about thyroid cancer (and more). I was dx'd almost exactly one year ago and the support group helped me survive.

I'm starting my annual follow up for papillary cancer and took my last Synthroid pill this morning. Let me know if you have any questions that I might be able to answer.

I wish you the best!
aw, I sympathize. I was very pushy and so got good docs who answered my questions. The high blood pressure was scary to me--what my doc told me was that it was normal for one who was very hypothyroid and that if it was transitory, that was fine. I just went and laid down and waited for it to go away and did some deep breathing and Reiki.

As far as a general suggestion, I'd just do as much research as you can and go to your appointments armed with specific questions. What did your path report say? Will you be doing radioactive iodine? If so, what is the lowest possible dose you can get away with? I demanded, and got, 37 millicuries and didn't evne have to be in the hospital. No side effects either. I am convinced that all my research and obsessing over details and being a pushy bitch gave me the best possible experience throughout the whole ordeal. :)

Best of luck!
I can certainly relate to this. It took me three months to get someone to tell my what type of thyroid cancer I had - and that came from my family doctor.
As above - thyca.org is a great website. My endo's website has a lot of information as well although it can be a bit scientific www.mythyroid.com
The thyroid cancer section is near the bottom on the right.
I have not had any health problems since my surgeries. I see my endo once a year.
Good luck.
I had my surgery in early September, I had my radiation in early November. I saw my endo doc twice before surgery but I have not yet seen her since the day of surgery in the hospital. It seems to be a common situation. I have many questions, like, when will I get another scan, what is the target TSH level, what is the level that will encourage the cancer to come back, how often do I have my thyroglobulin tests, how much radiation do I need next time and so on?

My doc's nurse told me I didn't need an appt. when I tried to get one after surgery. I was going to get a new doc, since this one didn't seem interested in helping met. My husband saw her nurse in the hall last week. She asked after me. He told her that I was troubled because I like to be an informed patient, that I expect to have a relationship with my docs, need to know if something isn't right. Then he told her that I felt like I had been hung out to dry and was feeling very alone and confused with my cancer and treatment.

I have an appt. this Monday. The nurse said she would talk to the doc and let her know what I am expecting from her. You need to tell them that you want information. You will find all kinds of conflicting bits of information in the internet. Docs that treat differently, some want the thyroid levels to be at what a person with a fully functioning thyroid would be at. Some want it to be as low as possible and keep you functioning. Some want the patient to tell them how they feel, and adjust accordingly. I want to know how MY doc treats. I want to know what my numbers are, not just that they "are right where they should be."

Be assertive, but not aggressive. Doc's HATE that, they do not like being challenged, but they usually are willing to educate if they know that you are receptive, and that you can understand what it is they are telling you. Just keep scheduling appointments with them for consultation until you get it clear in your mind what is going on and how they are treating you. Make a list of your questions. That way you can keep on track when you go into the office and the doc will see that you are making good use of the time you have together, and it will keep you and your doc from going off on tangents that do not get your questions answered. And leave space on your list of questions to write down the answers.

I found that when I was post-op and becoming hypothyroid, and particularly after the radiation when I was fully hypothyroid, I was not able to retain the answers to questions I had asked. One being what my thyroglobulin number was. I didn't think I had ever been told. My husband couldn't remember either. But then I remembered writing something about it and found it in a post in my LJ... so make sure you write down what they tell you, then later when you are wondering why nobody told you anything about it, you can go look and see if it was answered.

I am sorry you are having these problems. They suck. I felt like screaming at them, "This may be all common place to you and you know there is nothing to worry about, but you aren't the one with cancer. I am. It is not common to me." I was scared, (still am, sort of) I was angry (still am, sort of), I wanted answers, and they were just not concerned about it. Not because they don't care, but because they know that it isn't as bad as we think it is. So make an appointment, tell them you need to reassurance, and information that will help you calm down and be able to start the healing process. Don't let it get you down, you will make it through all this an after the shock of it wears off a bit and life goes on and gets back to normal, you will feel better. But you do have some hard days ahead of you until you get past the radiation and your thyroid levels get back to normal.

We're here for you. Let me know if you need to talk... (((hugs))))