# Post Completion TT update



## Abcdefg (Mar 16, 2012)

It's been 12 days, and I finally have the energy to post my surgery story. The operation itself was ok, but my hospital experience was awful. I must have hit the bad nurse lottery, because every single one was bad. Anyway, here in point form is what happened:

1. Was told 9:30 am surgery. Turns out, it was actually scheduled at 10:55. So had to sit and wait almost 3 hours . 
2. They didn't do anything beforehand-no weigh-in, no questionaire (I had to ask for a chart update since I was on 2 new meds after surgery #1), no talk with the anesthesiologist or surgeon (?), basically no pre-op at all.

3. I walked into the OR, they put in my IV, gave me the gas, and out I went.

4. I'm guessing it took about 2 hours, then I was in recovery for 2.5 hours before they wheeled me to my room. I wasn't given a single thing to drink in recovery, nor anything for 24 hours afterwards. This was sign #1 that this stay would be a nightmare.

5. Every hour or so they would pop in to check my BP and pulse-ox (bp was high, pulse-ox very low). I was threatened with oxygen several times.

6. My family came up to see me about 4pm. My mom was very upset that the Dr didn't come speak to them (or me for that matter). Apparently he left as soon as I was sewed up.

7. By 7pm, I was starved. I hadn't eaten since dinner the night before, and the only drink I had was an OJ and coffee my mom brought me. Once they went home, I never received anything else until the next morning when my brother came by. After repeatedly begging the nurses, who kept saying someone else would bring me some liquid, I ended up dragging myself out of bed at 3am and went searching for an ice machine and water. My stomach was growling so loud that it hurt enough to cry. It was 9:45 am the NEXT morning before anyone brought me a food tray-which was so disgusting I couldn't eat it. I gagged down the canned fruit and texted my brother to bring me something.

8. I had to request pain meds the entire time. I guess they gave me IV morphine in recovery, but it was 6pm before I saw a nurse again to give me more. At 4am, a labtech came in to draw blood for a calcium check, and I asked him to find a nurse for me. This took an hour. So....11 hours between doses. They never did bring me my regular meds either-2 of which are for High BP- so of course my readings were 150/95+ every check. I felt like I was either being neglected or no one was listening.

9. The absolute worst thing besides the nursing "care" was the room they put me in. I was in a ward with 3 VERY old ladies who were all bedridden and in diapers. It was horrible . The lady next to me was on a CPAP machine-which was so noisy it was impossible to sleep.

10. When the am shift came on, I begged to be released. Problem was, my calcium was reading at <1. So.... more blood draws 7 hours apart. That was the longest, most painful night of my life. No sleep, food, drinks or pain meds, and then they said they were keeping me another day. I broke down in hysterics and begged to be let go. Of course, no one cared. But.. I got lucky with the dinner nurse-she felt sorry for me, called the surgeon, and got him to agree that I could go home after the next draw if it was holding steady. Phew. It was at .97-same as the lunch draw. Even though I was having tingling and cramping, they sent me packing. I was never offered calcium supplements.

11. At 8:15 pm (day 2), I was given a scrip for Synthroid, and my clothes back. I got dressed and out to the elevator in 30 seconds flat.

So, that was the crux of my traumatic hospital experience. It was so bad, that I vowed to never go back to a hospital again ever.

Now, it's been 12 days. My incision turned out to be quite a bit longer the 2nd time (about 6.5 inches). I think it's a lot uglier and lumpier-but apparently they actually cut out the original scar and restitched (only internal-no external stitches at all). Recovery has been a lot slower than last time, and it was a lot more painful the first 3 days. But by day 4, I was able to just take Tylenol every 8 hours. I'm on nothing now.

I was extremely fatigued-more so than I've ever felt. Some of this was due to being awake for 2 solid days, and of course recovery in general. I still need naps every day, and I'm taking it easy.

I saw my GP yesterday due to feeling kind of poorly-turns out I have the start of pneumonia again (I suspected it, since the cough and rattling are familiar). She put me on antibiotics and has ordered a chest Xray for Fri this week.

Today was my meeting at the Cancer Agency with the Rad Onc. He was really nice, and did a thorough exam on me, then put a scope up my nose to check my vocal cords. That was painful-due to being a bit congested. My voice has been weak and hoarse since surgery, and I'm glad he checked for vocal cord damage. It's just slight inflammation, and he said my voice would improve in a week or 2.

He is undecided about whether I need RAI or not, so he's taking it to the Tumor Board in early Oct. The pathology on the TT came back benign, but the report had no mention of the multiple nodules that we knew were in there-so he's asking for the samples to be sent to Toronto for another expert to analyze. He said that if the Tumor Board comes back saying I was surgically cured, I won't be having RAI. If not, it'll be an in-patient (eeeek) stay in a lead room for 3 days. Crossing fingers I don't need it- not excited to have a repeat of that experience.

In the meantime while we wait, I'm to have a TG, and TGab test next week, and a neck US as soon as it's scheduled. I see the surgeon for a follow-up on Friday, and I hope he can removed the 2 end stitches that are irritating me. But other than that, it's just more waiting until probably Nov or Dec for RAI. The Rad Onc will be ordering Thyrogen for me *woot*. I'm happy I won't have to go hypo!

So that's the update. So sorry it's so dam long, but a lot of details to input :0


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## Octavia (Aug 1, 2011)

Oh, I'm sorry your experience was so crappy. Wow...you really did get the not-so-caring nursing staff.

I'm concerned about the possibility that you won't get RAI, though. With a 6.4 cm tumor (quite large, indeed) and lymph node invasion, there would be no question in the U.S. that you WOULD get RAI to make sure any remaining cells are dead. I like a "better safe than sorry" approach, though.

Do keep us posted. I'm glad you were feeling well enough to share an update. Keep on healing!

:hugs:


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## joplin1975 (Jul 21, 2011)

First, let me also say how sorry I am about your terrible care. That's just plain awful. I've been wondering how you are doing...

But, secondly...and perhaps more importantly, I'd like to echo Octavia's concerns.



Octavia said:


> I'm concerned about the possibility that you won't get RAI, though. With a 6.4 cm tumor (quite large, indeed) and lymph node invasion, there would be no question in the U.S. that you WOULD get RAI to make sure any remaining cells are dead. I like a "better safe than sorry" approach, though.


I really, really think you should push them hard on this. I don't care if the other side was benign. *AT A MINIMUM* you should be on the docket for a post-TT RAIU scan to look for evidence of residual thyroid cells.


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## Lovlkn (Dec 20, 2009)

Canadian healthcare - WOW!

All hospitals are different and your experience is one of the worst I've heard.

The worst part of my TT was the nurse not giving me my 2nd dose of pain meds post op which meant I went 10 hours without - excruciating pain all night long and I was delirious to ask for meds. I had sent my husband home to care for my kids, otherwise he would have pushed for more pain meds.

#1 lesson - be sure to have someone stay with you the entire night to communicate for you - nobody knows you better than someone who would spend the night in a hospital with you.

:hugs:


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## Abcdefg (Mar 16, 2012)

Thanks everyone. I echo your sentiments for sure. My family jokingly nicknamed the hospital the "Hanoi Hilton". That was the same place that did all the mixups with scheduling and had originally booked me for day surgery for the completion. I'm thinking now I should have left it that way. I was far better off at home.

I expressed to the Rad Onc my desire to go full guns from the start to avoid any more surgeries later. He understood, but I suppose he has protocols to follow. The pathology report from the RT showed the actual cancer as 9mm (within the 6.4cm tumour). That's why he was undecided. Hmm


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## joplin1975 (Jul 21, 2011)

I get that...and if it was "just" a 9mm tumor within a 6.4cm mass, I, personally, would think RAI might not be on the menu for you...but, but, but...that lymph node invasion stuff is what gets me worried.


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## Abcdefg (Mar 16, 2012)

I had my surgical follow up today. It was basically pointless. All he said was that I'm to see him once a year for an exam, and he would order US and TG testing. So, basically, if the Cancer Agency decides not to do RAI on me, I'm left to my own devices, with my family doc monitoring my meds.

Not exactly reassuring. How they can determine I'm cancer free without at least an RAIU scan is beyond me, but they're the experts right? With that said, I'm going to do my best to forget this ever happened, go back to work and enjoy Xmas. Even if I have to do the rad, it won't be for probably 6+ months anyway.


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## sophie.j (Sep 1, 2012)

very sorry to hear you had a rubbish experience in hospital. theres nothing worse  can't say mine was as bad as yours but i did feel like they made my surgery out to be a VERY minor thing. one of the nurses actually said to me, when i was in tears, 'oh, have you never had an operation like this before' and i was like im 19?!!!! very strange!

im also waiting on a decision regarding whether they want to do a full TT or RAI on me now, my results were cancerous and im still concerned they are just going to just do scans on me.

i hope you feel ok!! if you are worried, speak to your doctor, its better to be safe than sorry


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## adagio (Jun 25, 2012)

There are four really lousy hospitals in my local area (which is why I traveled 45 minutes to get the best one in the state), so I've heard lots of horror stories...but that is by far the WORST hospital experience I have ever heard of! That's uncalled for! I'm so sorry you had to go through that.

I hope you heal up quickly, and I hope you're cancer-free and don't need RAI!


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## jenny v (May 6, 2012)

I'm not sure how things work in Canada, but is there someone in management at the hospital that you could write or file a complaint with? The whole situation was ridiculous and you should not have been treated that way.


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## Abcdefg (Mar 16, 2012)

So....after a few messages left for the Rad Once today, he finally called me back. I wanted an update on the Tumor Board presentation (which was this morning). He says that the pathologists at the meeting couldn't agree whether my tumor was cancer or not. And that they're still undecided if I need RAI or no followup or treatment at all. They are now sending out my surgical specimen and slides for a *4th opinion:rolleyes:*

To hear this news was horrible. I can't even begin to describe the anger I'm feeling at having lived with the possibly false diagnosis of cancer for 3 months, all the waiting and anguish, and still no answers. Because they're sending my samples long distance, it'll be mid Nov at the earliest before we get the decision. To top it off, my Rad Onc is on holidays for that entire month, so he said Dec will be when he likely gives me news. I can't stand this.

Oh, and my US still aren't in, so no word yet on my internal bleed that became evident a week ago ( big lump formed under the incision). My GP put a stat order on the results but it's still taking forever. The Rad said I'd have to go back to the surgeon to have it dealt with, but seeing as the surgeon is fully booked until end of Nov, I'm stuck. Hope it doesn't throw a clot.

Ugh. Apparently, even with my TG level being very high, it's "normal after surgery, and doesn't tell us anything". Not really the answers I was looking for.

I think I'm done. Quite frankly, I don't even want to know at this point. I'm debating whether to discontinue all testing and follow up and pretend none of this ever happened.


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## Octavia (Aug 1, 2011)

Wow - that's just cruel and unusual punishment. I certainly hope you have answers and a plan soon.


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## joplin1975 (Jul 21, 2011)

That's just insane. I'm so sorry.

My thyroglobulin was not pulled after surgery...I was given a similar explanation - it's going to be high regardless. Still, I dunno...this is such an easily treatable condition, it seems nuts not to give you, minimally, peace of mind and get you that RAI.


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