Getting my throat cut

285 posts in this topic

After two years of being bounced from doctor to doctor and, most recently, another ultrasound and biopsy with some very disturbing results, I was finally sent to an oncologist last week. He looked at the ultrasound reports and didn't hesitate for even a second to tell me that the thyroid is coming out. I started to tell him about how the sheer size of it alone is inhibiting my ability to swallow, breathe or turn my head and he brushed that off saying that it didn't really matter since the main thing is to get it out because of the cancerous cells in the largest nodule. He said that he would do a full thyroidectomy as opposed to a partial (which the insurance company would probably insist upon) because both sides of the gland are full of nodules and even if the ones on the left aren't showing the microcalcifications yet, the risk of cancer is too great to leave even part of it.

Yay!! I'm finally going to get my throat cut!! If they had done this a couple of years ago, I wouldn't be hearing the word "cancer" now. Oh well, done is done and can't be undone so there's no sense in fretting over what should have been done in the past. The surgery is set for May 17th providing that I can pass the tests on my heart. There's a little problem there with irregular heartbeat and my infamous rapid pulse (something else I've been trying to tell doctors about for the past two years) that is making the surgeon a little nervous. My blood pressure has been thru the roof and I finally cornered my internist about it the day his nurse took it and it was 185/95. He'd *completely* missed the problems with my heart because he kept arguing with me that I couldn't possibly have any symptoms of Graves Disease since my thyroid levels are all normal. <banging head on desk> So, that high blood pressure and the pulse that never goes below 90 and the irregular heartbeat that have always and forever been a part of my Graves Disease just didn't exist because they didn't want to see it. He still argued with me until Bruce used his "military voice". The end result is that I'm on beta blockers--the traditional treatment for Grave's related cardio issues. <shaking head and muttering about idiots>

I pointed out to him that my blood oxygen saturation had been very, very low when I had the biopsy and mentioned how hard it is to get air down my throat past this bowling ball of a thyroid gland. He was going to brush that off too and then decided to do an oxygen sat test there in the office. He had the nurse walk me one time around the nurse's desk and it went from 95% to 88%. Halfway thru the second time around the desk the nurse looked at the meter, looked at me and yelled "Oh my god!" and grabbed my arm. Apparently she thought I was going to faint. (I never faint as long as there are walls to hang onto) The doctor came running down the hall and grabbed my other arm and they got me back into the exam room. My oxygen sat was at 81% which was why they were freaking out. I told them that this is normal and I feel this way all the time when I try to move around.

So the doctor ordered oxygen and a chest xray to check my lungs. I kept pointing out that it's hard to breathe around a bowling ball and he kept ignoring me. He said if it's not my lungs or emphysema then it's got to be my heart. I kept saying, "Um, Dr, this is all symptomatic of Graves" and he kept ignoring me. <shrug> They did the xray and the oncologist said there's no sign of anything at all wrong with my lungs so they're looking at my heart now. In the meantime there's been a steady stream of oxygen supply people in and out of my house setting up concentrators and portable units and all those fun things.

I'm fairly certain that all this will settle down once they get the thyroid out and I can give back all the oxygen equipment and stop worrying that there's something wrong with my heart. At least I hope so. I had a spell of arrhythmia the other day that lasted for almost an hour that was pretty scary. But I'm not going to worry about any of that unless it continues after the surgery. Right now I'm still pretty sure that it's all related to the thyroid.

I'll see a new endo next week and get started with the plan for thyroid replacement therapy after the surgery. I have my pre-op cardio screening set up for the week before the surgery and am keeping my fingers crossed that it goes okay so they have no reason to call off the operation. I have to be honest; right now I'm not doing very well. I can't get around outside of the house without a cane anymore and being put on oxygen has forced me to face up to exactly how sick I really am. I'm a little scared about how adamant they are that the cardiac issues aren't caused by the thyroid but I keep telling myself they've been wrong about everything else so they're probably wrong about that too. Oddly enough, I'm not really worried about the cancer because as far as I know now, that's tucked away all neat and tidy in my thyroid and it doesn't progress very fast. Mostly I'm upset that it had to take my getting to be this sick before they would do something they could have done years ago and I wouldn't have had to go thru all this.

So that's what I've been up to and why I've been so quiet lately. I haven't had a lot of energy to do much at all, especially the past few days. It's been difficult for me to keep up with communication because the language center of my brain isn't working quite right (another symptom of that Grave's Disease that doesn't exist combined with being in a constant state of fibro-flare) so if I owe someone an email or pm, forgive me for not replying right away. Hopefully I'll be back to myself again soon.

Deb

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Wishing you the very best for the difficult coming months Deb and then for the years to come. I am so glad for you that they are finally admitting that those tennis balls need to come out now. Sending calming energy to your heart and healing thoughts and best wishes to you.

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(I never faint as long as there are walls to hang onto)

Your sense of humor will get you through this.

I'm off to stick some very sharp pins into some doctor dolls for ya.

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:o Healing candles and thoughts are lighting up for you.

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Prayers for a full recovery. Thyroid problems can affect everything in your body, so maybe this will help with a lot of things.

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OMG Deb! I'm so glad they are finally going to do something about your thyroid!! :o

Hey, I truly believe that one can NEVER have too much oxygen.

wt*, buy an oxy machine, and you'll at the very least, look 1000x;s better than most, and at best be the healthiest chicky on the block :(

Big hugs,

Monica

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I hope this all settles down for you after the op Debs. My Mum had her thyroid out when she was in her early 50s and never looked back. She's 89 now and has never had any thyroid replacement therapy.

Take care and enjoy the oxygen boost.

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Smooches!

You know i got your back and eventually i will be bringing a little New England your way. So you have to get better. :o

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Oh, Deb! So glad that SOMETHING will be done, finally. Bless you for your persistence and bless Bruce for bringing up the big guns. Did I miss why you are still seeing that idiot doctor? <looking for rusty pins to stick into a certain doctor doll>

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OMG...Finally! :( I don't usually root for someone to have to go under the knife, but in your case Deb...oh yeah!! So long overdue! I am sendin' ya tons of positive vibes that all goes as planned without a hitch, and you are finally gonna get the relief you need :) You just lay low now, take good care and let the mighty power of the "Greenleaf positive vibes club" wash over ya!!! :o You know we all have your back here!

BIG HUGS!

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Deb, I am so happy to hear that you finally have a proactive doctor on your side. Hope this takes care of it, and you will be enjoying a fabulous summer in no time!

{{{HUGS}}}

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Sending good wishes,and prayers for a speedy ,event free recovery!! :o

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WOOO HOOO. Although having surgery is never fun this is really good news for you, at last. Persistence pays off! prayers for successful sugery and a speedy recovery are being said for you. As you feel better, keepus posted to your recovery.

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Merde

Ya know Deb, it it weren't all so tragic, it would be very very funny, these comedies of errors and lack of judgment and medical know-hows and I wish I had the words I want to say here but I do not....but I'm feeling a little postal....

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I'm sending positive thoughts and energy your way, here's to a speedy full recovery!!

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FINALLY!!! Dang it, Sis, you don't do anything by halves, do you? BTW, if the arrhythmias continue I wonder how long before they'll get around to installing a pacemaker. And haven't any of these doctors ever heard of Graves?

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I think we're going to have to cancel the celebration. Today's mail brought the report from the oncologist and it's totally different from what he told me in the office. The report says that he doesn't think there's any reason to take out my thyroid except to "ease the patient's perception of discomfort, breathing problems, and fear of cancer". It continues to say that he thinks the several suspicious nodules are all benign and he considers my history of thyroid problems to be unlikely because radical changes in thyroid levels simply don't happen. He finished up with "I'm demanding that she consult with an endocrinologist even tho she says she's had issues with them in the past and will only perform the surgery based on the opinion of the endocrinologist. I will be happy to cancel this surgery."

That is SO not what he told us in the office! I have no idea what made him change his mind. Why would he schedule the surgery if he doesn't think that I need it? I've got three other appointments scheduled for pre-op stuff that might be completely pointless if the endo agrees with him. And since he's going to consult with the endo before I see him, I think it's a sure bet that the endo will have his own preconceived perception about me. I don't think there's a chance in h*ll that he'll say yes and even if he does, the insurance company will never approve it based on the oncologist's report.

I see the endo next week and we'll see what happens then, but I think I know where this is going. I just don't know why. And it also raises the question of why I'm on oxygen if there's nothing wrong with my lungs, my heart or my thyroid and that's what the oncologist is saying based on my xrays, ultrasounds and the 48 hour heart monitor test.

I don't know what to do. I don't even have words to express what this has done to me today. I've been sitting here in shock most of the day and now I'm going to take a valium and go to bed. Maybe tomorrow I'll be able to think about it more clearly.

Deb

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Gah. Get a new doctor.Your a suborn woman don't let them boss you around. Fell better K?

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Oh Deb I'm so frustrated for you! It just isn't fair!!! (and many more stronger expletives going through my head)

I wouldn't know what to do, but would be very tempted to go down to the surgery to insist you see him again to explain himself directly to you (though I suspect he'd do everything he could to avoid talking to you directly)

Sending hugs and strength and still hoping.

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Well that tears it! I'm praying for you. I wonder if the insurance carrier has gotten to the oncologist? Perhaps if you teach these folks how to spell "criminal negligence" and whip out a copy of the Merck Manual's description of Graves' (for starters) they'll sit up & take notice. It smacks of a set-up to me.

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:o :):grrr::):cheer::doh::rofl: (that rant is censored)...

I am so terribly sorry to hear this Deb...you do not deserve this run-around at all. I will keep you in my thoughts and prayers, and prayer that one of these A$$-clown Dr.'s comes to their senses! What a horrible mess....

Sending you gentle hugs.

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I would take the letter and go down to the office and ask them what is going on.. that you were told and have scheduled the surgery and was told in the letter you don't need it..

Maybe they can work in a meeting with the doctor while you are there so you can get it settled..

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Oh, Deb ... my heart sank when I read your post. He thinks? He thinks?? He thinks???

Oh, dear heart, you are in our thoughts and prayers. We're praying especially that a satisfctory resolution comes out of this mess.

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