# The Saga continues



## Abcdefg (Mar 16, 2012)

One week to go until my completion TT, and I still have not had one conversation with my surgeon or the Cancer Agency. I have no idea what is planned, and I'm nervous as he**.

Today was my "pre-op" appt at the hospital- if you can call it that. The first thing the nurse said was " you don't need to be here, we saw you in July"

I immediately got upset. Why do they keep having these communication breakdowns?

Anyway, I spent almost 2 hours with her talking. I initially told her I had questions and hoped she could answer them. She strangely knew nothing about Thyca and had to google it. Grr. But, she did show me some reports I hadn't seen before. My surgical report from July showing the surgeon never examined my lymph nodes, nor purposely removed the one that was metastatic on pathology (more on this later). Not only that, but my previous pre-op chest xray had a notation that they found a

http://en.wikipedia.org/wiki/Atelectasis

She was quite concerned they hadn't reviewed my xray before operating. Seems I could have a possible tumour in my lung....eek.

Well, to top it off... I had a look at the surgical order for next Friday. Despite my begging, and the dr's assurance I would be an overnight stay, they wrote it as *day surgery!*. Again. it was at this point I totally lost it and started to cry my eyes out. I'm so worried and freaked out that they won't monitor me, or do a proper job operating. I'm only booked in the OR for an hour. Not enough time to do the CND he said would be performed. How can they be certain the nodes don't have cancer if they don't remove, US or investigate them? I had to really stress my unwant of a 3rd surgery in case he misses them. Isn't a central neck dissection protocol for known cancer with metastisis?

Well, after getting home from this disastrous appt, I filled my family in. My brother immediately called his own ENT's office to see if they could do an urgent 2nd opinion. Luckily, I miraculously got an appt for Tues morning. TG.

A couple hours ago, the nurse from the hospital called to tell me she had contacted my surgeon's office regarding the order form. Apparently, there was a "clerical" error on it. Had we not noticed this, I would have been turfed after 3 hours.. no calcium monitoring or anything. I'm really starting to hate that med team. How many mistakes can happen here???

Anyway, I'm relieved to have the chance to discuss my concerns and get another dr's take on this surgery. The fact is, once the last lobe is out, there's no turning back, and I just don't feel confident enough about the care I'm getting.

Thoughts? Thanks


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## Andros (Aug 26, 2009)

Abcdefg said:


> One week to go until my completion TT, and I still have not had one conversation with my surgeon or the Cancer Agency. I have no idea what is planned, and I'm nervous as he**.
> 
> Today was my "pre-op" appt at the hospital- if you can call it that. The first thing the nurse said was " you don't need to be here, we saw you in July"
> 
> ...


I have to admit I am not very confident either. I am going to say a prayer about your appt. w/ENT Tuesday morning. You can always jump ship. I am glad your brother interceded. Really glad!

Please let us know and do know you are in my thoughts and prayers!


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## webster2 (May 19, 2011)

Me too, I will send prayers for you. I am really glad your brother got involved and hope the appointment Tuesday goes well.

Best wishes!


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## Octavia (Aug 1, 2011)

I agree with your lack of confidence. Are you in the United States? (And therefore able to go to whatever doctor you choose?)

Good move to get an appointment with a new ENT...smart indeed!

And my opinion (opinion only) is that YES, a central neck dissection is likely standard protocol for known thyca.

Keep us posted.

Sending hugs your way---------------->>>>>> :hugs:


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## joplin1975 (Jul 21, 2011)

Octavia said:


> And my opinion (opinion only) is that YES, a central neck dissection is likely standard protocol for known thyca.


Agreed. Keep the appointment with the ENT and see how it goes. Have you gotten any info on RAI yet? Or is that through the non-responsive cancer center?


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## Abcdefg (Mar 16, 2012)

Thank you everyone! yesterday was very tough . Seeing that surgical order sheet sent me over the edge. That is one huge mistake they made. I think that was the tipping point where I decided my surgeon is a stooge.

Joplin: RAI (don't even know yet if they will recommend it) is all done by the incommunicado Cancer centre. Which I don't even have an initial meeting with until 2 weeks after the surgery. I've been given no direction on what they do, perform, or decide. It's all a huge mystery. That's why I'm so anxious. I could literally go 4 months with no meds if they don't write the orders for it. Being in Canada for this has it's disadvantages .

The surgeon is supposed to call me (I was told last night) to answer my questions, but being the weekend, I don't expect him to. I hope the 2nd opinion doc can give me the specifics I need to make an informed decision. I just can't get over that I'm only scheduled for an hour in the OR? Does this seem too short?


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## joplin1975 (Jul 21, 2011)

Yes!

My surgery was originally schedule for about two...two and a half-ish hours. Once they got in there and saw it ws a mess, my surgeon added in the neck dissection and told me later that he took his time looking around just to make sure he wasn't missing anything (within reason, because we all know thyroid surgery doesn't/can't get everything).

In total, it took about three and a half hours. I realize you are going in for a completion and not a total, but given you have cancer and given that I, personally, expect a CND, I would assume the surgery would take no less than two hours.

I hope this ENT calls soon.

Just ut of curiosity...we're a couple of hours from the Canadian border. My husband treats a few of our Canadian friends and they get reimbursed by the NHS for services rendered. If you don't like what the ENT has to say, could you go south?


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## jenny v (May 6, 2012)

Good grief, how much more can they screw up with your case?!? I'm so sorry this is happening to you and I'm glad your brother was able to intervene and get you into an ENT so quickly.

Is there someone in charge, like a manager or someone, you can call and complain to? I'm not usually one to suggest yelling or pitching a fit, but in this case you are definitely warranted. This is your health and your life and you deserve better treatment than you're getting from these people.


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## Abcdefg (Mar 16, 2012)

I'm fairly certain my GP should be the coordinator- but she's not only unavailable (her office is closed until Wed), but she also has never been copied on any of my reports. My *mother* told her I had cancer. Serious communication breakdowns happening.

I would most certainly go south for treatment, if I could afford it. I don't have that kind of money. I'm only getting 55% pay as it is being on Short-term health leave.

I still haven't heard from the doctor. I decided after I see the 2nd surgeon, if #1 doesn't contact me by Wed afternoon, I will go with #2 and reschedule. If this cancer is as non-urgent as they claim, it can wait another few months. Better to go in knowing my treatment plan and have my providers in place for follow up, than have to scramble and fight with them afterward.


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## kadalikay (Aug 16, 2012)

I was diagnosed with the same cancer about a week ago, after my TT. I will keep you in my prayers....I know what you mean with insurance. We have a really high deductible and have had to pay for just about everything up front, except the hospital end of things so far.... I know that there are no endo's in my area in my network. The $$$ bills are pilling up. It makes me wonder what happens to those people who do not have the financial means for treatment?


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