# Am I over-reacting?



## butterfly (Jun 26, 2010)

I would really like some input, because I'm just driving myself crazy!

So I had surgery to remove the left lobe and two nodules at the end of July. The plan was that they would do a quick check during surgery, and if they found cancer, they would remove all of it. If not, they would just remove 1/2. At the quick check, everything seemed fine. However, when the pathology report came back, I had a papillary microcarcinoma.

That freaked me out entirely. I did not expect cancer, not in the least. My FNA's for the last two years have been benign, and my endo did not think I had cancer. The only reason he recommended surgery is because the nodules grew so much, and I was having difficulty swallowing and breathing.

I have lupus, Sjogren's, Celiac, and Reynaud's. Adding cancer to this is more than I can handle. I realize it was small, but just knowing I had cancer inside me is driving me nuts. I want the rest of my thyroid removed!!!!!!!! I don't want to give cancer, if there's any in the right lobe, a chance to take hold and grow. I don't want it to reach the lymph nodes and get lymphoma, which I am at very high risk for because of the Sjogren's. I don't want to live with this fear every day. If they had found it during surgery, they would have removed the rest of it, so why won't they now?!?!?!

My doctors think I'm over-reacting. The surgeon said it's not necessary; it was very small and he got it all. My one lymph node he removed was clear.

My endo was condescending and dismissive, saying "You are reading too much on the internet." Grrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!

Am I really over-reacting? I won't have the surgery now, not until next summer, because I'm a teacher and I don't want this to interfere with the school year. But if I at least know that next June I'll have the rest of this thyroid out, I can relax.

Also, when I saw the endo, I asked if he's going to test the free T3 and free T4. He said only T4. I asked why and he said, "Because you don't need it." No further explanation. Really?!?!

Clearly, I'm firing him and hiring a new endo, but I guess before I start talking about all of this, I want to know if my feelings and expectations are reasonable. Please share your thoughts and your experiences here, because I think I'm losing it...


----------



## Andros (Aug 26, 2009)

butterfly said:


> I would really like some input, because I'm just driving myself crazy!
> 
> So I had surgery to remove the left lobe and two nodules at the end of July. The plan was that they would do a quick check during surgery, and if they found cancer, they would remove all of it. If not, they would just remove 1/2. At the quick check, everything seemed fine. However, when the pathology report came back, I had a papillary microcarcinoma.
> 
> ...


Nope, I think you are right to "wonder" about the future regarding all of this. We have talked before about the possibility of cancer and lo and behold. I know I sound like a broken record but I know better and I push and push some more.

I believe you do need to go doctor shopping. OMG!! I would be furious if I got an answer such as that endo gave you. Yes; you need FT4 and FT3 and more importantly because of the cancer, your TSH needs to be suppressed at all times.

God bless,


----------



## butterfly (Jun 26, 2010)

I have been beyond furious since my appointment on Monday!! From tears to pure anger to strong resolve to depression and everything in between. I wrote a very bad review on one of those rate your doctor sites, and I plan to write lots more!  (That helped my anger a lot!)

I feel better that you agree, Andros, thank you for responding and sharing your thoughts. I just have this strong feeling that there is more cancer, and I won't relax until I know it's going to be removed. And I'm going to ask my primary doc to do the free T3. He may not, he may defer to the endo, but I'll ask.

And I already scheduled an appointment with a new end yesterday. This one is the head of endocrinology at the hospital!  Of course, he may agree with my other one, but I'm not afraid anymore. I am the "customer" and in this case especially, I am right!! I'm not going to just passively listen to what my docs say anymore - I am going to be a full partner in my health care!


----------



## Lovlkn (Dec 20, 2009)

butterfly said:


> I have been beyond furious since my appointment on Monday!! From tears to pure anger to strong resolve to depression and everything in between. I wrote a very bad review on one of those rate your doctor sites, and I plan to write lots more!  (That helped my anger a lot!)
> 
> I feel better that you agree, Andros, thank you for responding and sharing your thoughts. I just have this strong feeling that there is more cancer, and I won't relax until I know it's going to be removed. And I'm going to ask my primary doc to do the free T3. He may not, he may defer to the endo, but I'll ask.
> 
> And I already scheduled an appointment with a new end yesterday. This one is the head of endocrinology at the hospital!  Of course, he may agree with my other one, but I'm not afraid anymore. I am the "customer" and in this case especially, I am right!! I'm not going to just passively listen to what my docs say anymore - I am going to be a full partner in my health care!


{{hugs}}

Even if there isn't any cancer in the other 1/2 I agree with Andros that your TSH needs to be suppressed.

If it were me I would insist the rest of my thyroid be removed ASAP. Why not do it over X-mas break?


----------



## Andros (Aug 26, 2009)

butterfly said:


> I have been beyond furious since my appointment on Monday!! From tears to pure anger to strong resolve to depression and everything in between. I wrote a very bad review on one of those rate your doctor sites, and I plan to write lots more!  (That helped my anger a lot!)
> 
> I feel better that you agree, Andros, thank you for responding and sharing your thoughts. I just have this strong feeling that there is more cancer, and I won't relax until I know it's going to be removed. And I'm going to ask my primary doc to do the free T3. He may not, he may defer to the endo, but I'll ask.
> 
> And I already scheduled an appointment with a new end yesterday. This one is the head of endocrinology at the hospital!  Of course, he may agree with my other one, but I'm not afraid anymore. I am the "customer" and in this case especially, I am right!! I'm not going to just passively listen to what my docs say anymore - I am going to be a full partner in my health care!


And many of us here will be glad to partner w/you! Go kick some butt, GF!!


----------



## butterfly (Jun 26, 2010)

Thank you!!! I'm getting ready to kick some serious butt tomorrow!!!! 

The only reason I don't want to have surgery over Christmas break is that usually I struggle with my health in the fall and winter. The kids at school are always sick, and although I try to keep all of us germ-free as possible, I generally end up with an upper respiratory infection which leads to a lupus flare settling in my lungs. I don't want to risk even more trouble with surgery then. My mom suggested having it during Easter break, since I have ten days off. Then I could be free to enjoy my summer. I'm seriously considering that.

No matter what, my conviction is stronger than ever that I want this surgery done!! And people who know me well, know how stubborn I am. Usually that's not one of my more attractive traits. In this situation, however, I am quite proud of it!


----------



## Andros (Aug 26, 2009)

butterfly said:


> Thank you!!! I'm getting ready to kick some serious butt tomorrow!!!!
> 
> The only reason I don't want to have surgery over Christmas break is that usually I struggle with my health in the fall and winter. The kids at school are always sick, and although I try to keep all of us germ-free as possible, I generally end up with an upper respiratory infection which leads to a lupus flare settling in my lungs. I don't want to risk even more trouble with surgery then. My mom suggested having it during Easter break, since I have ten days off. Then I could be free to enjoy my summer. I'm seriously considering that.
> 
> No matter what, my conviction is stronger than ever that I want this surgery done!! And people who know me well, know how stubborn I am. Usually that's not one of my more attractive traits. In this situation, however, I am quite proud of it!


I have Lupus as well and I suffered horribly w/ Pleurisy and Costalchondritis. So so painful and scary. I hope you don't have that.


----------



## desrtbloom (May 23, 2010)

I say GET IT OUT!!!  It's your body and you have enough issues that you don't need to be stressing out over the remaining lobe. Get a new Endo and have them refer you to a new surgeon and get the rest out and move on. It's our lives and our bodies. With thyroid issues we do not need any added stressors.

Patti


----------



## butterfly (Jun 26, 2010)

Andros, I haven't had pleurisy but I did have Costalchondritis a couple years ago. It was awful, and scary - I thought for sure I was having a heart attack and they kept me overnight in the hospital. (That was the one time I didn't argue about being in the hospital!!) Only when all the heart-related tests came back normal did they determine it was costalchondritis from lupus.

Patti - exactly!!!!

Yesterday was good. I saw my primary care doctor and he recommended a new endo, and he was very compassionate. I so needed that! He said I've already dealt with enough over the last four years; I shouldn't have to go through all of this with my thyroid worrying about cancer either. He is fine with me having surgery, but he also offered other options for me to consider. There is apparently some kind of radioactive scan of the thyroid that will indicate if cancer is present. He said I could also have a PET scan to see if there's cancer ANYWHERE in my body. But my first steps are to talk to the surgeon and find a new endo.

I can't see the endo he recommended, because he's not accepting new patients. I do have an appointment with another doctor in the practice, though, on September 9th. And my appointment with the head of endo at the hospital is on October 5th. Then I'll make a decision on which doctor to hire, and go from there.

I also saw the surgeon yesterday, for a minute. He said I could come at the end of his day to look at the thing on my neck I was concerned about. First he thought it was a stitch, then he looked closer and said it's a thrombosis in my vein, and to take Motrin if it's painful,and massage it. I said I still think there's cancer in my thyroid and I want to have surgery in the spring or summer. He smiled and said, "Of course you do," but in a very nice way. He didn't commit to anything yet, but said, "We'll talk." I didn't push him, because he was already staying late for me.

Then of course I got home, went online, found out a thrombosis is a blood clot and freaked out all over again!!!

I'm calmer now though. Maybe I heard him wrong, maybe it's not a thrombosis, and even if it is, often it can resolve itself. It is much less pronounced than it was a few days ago, and the pain is way, way less. Hardly noticeable. And there are no other typical blood clot symptoms at all. So for now, I'm taking a break from doctors, I've reached my limit. I'm going back to work on Tuesday and the kids start on September 7th. My boss called me yesterday and asked if I would co-facilitate the beginning of the welcome back staff meeting, so I need to put my attention and energy on planning that today. (How sad is that - I'm excited about having a project to do on my last free days of the summer?!?!)

Soon enough, I'll get the blood work back from my original endo...can hardly wait to hear from him...ugh.

I really appreciate your support and comments, this board has really helped me feel that I'm not alone through this.


----------



## Andros (Aug 26, 2009)

butterfly said:


> Andros, I haven't had pleurisy but I did have Costalchondritis a couple years ago. It was awful, and scary - I thought for sure I was having a heart attack and they kept me overnight in the hospital. (That was the one time I didn't argue about being in the hospital!!) Only when all the heart-related tests came back normal did they determine it was costalchondritis from lupus.
> 
> Patti - exactly!!!!
> 
> ...


Teachers work all year round. I know a lot of teachers so I know the scoop. Hard hard job.

Well...................you have been busy and you may be getting somewhere here but a thrombosis? Geez! You just keep an eye on this and it would not hurt to have a family member look and give opinion.

Sorry you have the Tietze Syndrome. It is excruciatingly painful and yes; one does think they are having a heart attack.


----------

