# Add me to the club :(



## Abcdefg

Official diagnosis: _Follicular Variant, Papillary Carcinoma with Metastatic Nodal invasion. *6.4 cm*
_

The doctor was deadpan with his opening line " Well dear, you have Cancer"

Then he explained I have to have a TT, RAI, and a PETscan asap. I'm on a waitlist (wtf??? again?) for the surgery. Best ballpark they could tell me was 'soon" 

My family is not taking the news very well. No matter how much I talked about the possibility, none of them did ANY research, so I felt like a broken record explaining it all.

But *dammit*, why didn't he remove the ENTIRE thing the first time??? He knew when he was in there the nodes were cancerous! Arggggggggg


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## Lovlkn

That there explains your hyperactivity - in an earlier post you said you had a TT, not a partial.

I am sorry for your diagnosis and I agree with your questioning why they did not remove the entire thyroid the 1st time around.

:hugs:

Fingers and toes crossed they have a surgical opening sooner than later.


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## joplin1975

I'm sorry.

It's scary and I'm not minimizing it, but remember this is a really slow growing disease and very easily treatable. The second surgery stinks and RAI can be a pain, logistically, but once it's all over, you'll be so much better off. Hang in there!


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## webster2

Hang in there!


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## Octavia

Well, definitely not the news you were hoping for. 

You will get through this. I hope you get your second surgery soon so you can get on with it.


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## adagio

Awwwww! So sorry to hear that!!! I'm anticipating my own surgery at the end of August, and I can only imagine what you're going through.

Hang in there! You're gonna kick this thing in the tail!


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## Abcdefg

Thanks everyone. I appreciate the support.

Joplin: I'm not so sure it's slow growing in my case. The nodule was 3.7cm in Feb, approx 5cm in April, and in July 6.4cm. Seems aggressive and fast growing, no?


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## Andros

Abcdefg said:


> Official diagnosis: _Follicular Variant, Papillary Carcinoma with Metastatic Nodal invasion. *6.4 cm*
> _
> 
> The doctor was deadpan with his opening line " Well dear, you have Cancer"
> 
> Then he explained I have to have a TT, RAI, and a PETscan asap. I'm on a waitlist (wtf??? again?) for the surgery. Best ballpark they could tell me was 'soon"
> 
> My family is not taking the news very well. No matter how much I talked about the possibility, none of them did ANY research, so I felt like a broken record explaining it all.
> 
> But *dammit*, why didn't he remove the ENTIRE thing the first time??? He knew when he was in there the nodes were cancerous! Arggggggggg


Oh, dear!! This is a scary situation and a real bummer!! Just know that we are here for you and you will get through this. Everyone here is fine as far as I know. It was not an easy journey but they made it and you will too!

{{{{{Abcdefg}}}}}


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## joplin1975

Abcdefg said:


> Thanks everyone. I appreciate the support.
> 
> Joplin: I'm not so sure it's slow growing in my case. The nodule was 3.7cm in Feb, approx 5cm in April, and in July 6.4cm. Seems aggressive and fast growing, no?


It might be revved up, but papillary cancer is rarely truly aggressive in the strictest sense. My gut says that the u/s measurements were off -- which they were, substantially, in my case as well. U/s has many limitations.

In any event, you'll do fine, I promise. I had lymph node involvement too. I'm here almost a year out and am doing great. Better than ever. So good that I bought myself a new baby horse as a "way to kick cancer's arse" present to myself (I know you don't know this but in December, I hit a really low point and sold my other young horses that I had as prospects, thinking surely I'd never really ride competitively again).


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## Octavia

joplin1975 said:


> So good that I bought myself a new baby horse as a "way to kick cancer's arse" present to myself.


That's awesome, joplin!!!!! Name?


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## joplin1975

Thanks...posted in the horses thread as to not take away from Abcdefg's diagnosis and upcoming treatments.


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## Abcdefg

Awww, new baby horsies! That's fab 

I've spent the entire morning on the phone. And I HATE talking on the phone lol. Everyman and his dog wants to hear my story. I'm tempted to send out a mass email


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## Octavia

Abcdefg said:


> Awww, new baby horsies! That's fab
> 
> I've spent the entire morning on the phone. And I HATE talking on the phone lol. Everyman and his dog wants to hear my story. I'm tempted to send out a mass email


Email? That's so 2009. Just send a mass text message!


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## Andros

Abcdefg said:


> Official diagnosis: _Follicular Variant, Papillary Carcinoma with Metastatic Nodal invasion. *6.4 cm*
> _
> 
> The doctor was deadpan with his opening line " Well dear, you have Cancer"
> 
> Then he explained I have to have a TT, RAI, and a PETscan asap. I'm on a waitlist (wtf??? again?) for the surgery. Best ballpark they could tell me was 'soon"
> 
> My family is not taking the news very well. No matter how much I talked about the possibility, none of them did ANY research, so I felt like a broken record explaining it all.
> 
> But *dammit*, why didn't he remove the ENTIRE thing the first time??? He knew when he was in there the nodes were cancerous! Arggggggggg


Please let us know when your surgery is scheduled.


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## Abcdefg

Octavia said:


> Email? That's so 2009. Just send a mass text message!


LOL. I would, but half my friends/family STILL don't have cell phones. Sad but true.

I'm calling the booking agent back today to get a date (hopefully!). I need a ballpark, as I have some bucket list items I want to complete before being laid up again.


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## Andros

Abcdefg said:


> LOL. I would, but half my friends/family STILL don't have cell phones. Sad but true.
> 
> I'm calling the booking agent back today to get a date (hopefully!). I need a ballpark, as I have some bucket list items I want to complete before being laid up again.


Re the cell phones; it may be a good thing. Lots of folks are turning up w/ meningiomas of the brain and some of are beginning to wonder why the rise in thyroid cancer.


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## Abcdefg

*Have a surgery date!!!!!*

Sept 7th

I asked to be put on the cancellation list also, but there's only 2 days he can do surgery before my schedule date. Half the hospital goes on vacation the last 2 weeks of Aug. Good news I can still go on my camping trip we booked and paid for months ago.


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## adagio

Abcdefg said:


> Awww, new baby horsies! That's fab
> 
> I've spent the entire morning on the phone. And I HATE talking on the phone lol. Everyman and his dog wants to hear my story. I'm tempted to send out a mass email


Not sure if it would help you at this stage of the game or not, but for me, it helped to start a blog. (The URL is in my signature.) I work for a doctor, and I KNOW that our patients will be asking tons and tons of questions after I'm back from surgery. (I'm his only staff, so it's very obvious when I'm gone.) I did the blog so that when people have a bazillion questions, I don't have to tell the story over and over again. I simply give them the URL, and they can take it from there. It also eliminates rumors from flying around, since I'll have all the ACCURATE information on my blog.

It's also helping me to blow off steam when I get frustrated/scared/etc. I'm still in the middle of it all, and won't have my surgery until 8/30. I can't imagine what you're going through now.

You are a STRONG person!!! How do I know? Because only strong people can handle this sort of thing.


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## Andros

Abcdefg said:


> *Have a surgery date!!!!!*
> 
> Sept 7th
> 
> I asked to be put on the cancellation list also, but there's only 2 days he can do surgery before my schedule date. Half the hospital goes on vacation the last 2 weeks of Aug. Good news I can still go on my camping trip we booked and paid for months ago.


Geez; I am so glad you have a date but just hate "all" of this for you. You have had a really rough time of it.


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## joplin1975

Abcdefg said:


> *Have a surgery date!!!!!*
> 
> Sept 7th
> 
> I asked to be put on the cancellation list also, but there's only 2 days he can do surgery before my schedule date. Half the hospital goes on vacation the last 2 weeks of Aug. Good news I can still go on my camping trip we booked and paid for months ago.


Not too, too far away. And it will give a chance to recover. Hang in there, it'll all be over before you know it!


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## Abcdefg

joplin1975 said:


> Not too, too far away. And it will give a chance to recover. Hang in there, it'll all be over before you know it!


Just wanted to thank you for the wonderful advice you always give (and the other ladies!). You're all truly amazing, caring people and so prompt with replies hugs4

Today's update: felt really awful physically. Probably the worst day I've had yet since this all began. It was quite stunning because I've actually felt really well the last week or so. I coined my state a "cancer day". The fatigue is so bad, I just can't fathom how I managed to get through the last year like this.

Anyway, I got a call from the Endo's office this afternoon asking me to come in next week. Any clue as to why? They wouldn't even hint at a reason, but think it's about a treatment plan? I'm a newb at this, and every single thing is distressing


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## joplin1975

I would imagine they would want to talk to you about the RAI process and when you'd start your replacement medication. But that's just a guess. 

Take it day by day...or hour by hour...and get lots and lots of sleep.


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## Andros

Abcdefg said:


> Just wanted to thank you for the wonderful advice you always give (and the other ladies!). You're all truly amazing, caring people and so prompt with replies hugs4
> 
> Today's update: felt really awful physically. Probably the worst day I've had yet since this all began. It was quite stunning because I've actually felt really well the last week or so. I coined my state a "cancer day". The fatigue is so bad, I just can't fathom how I managed to get through the last year like this.
> 
> Anyway, I got a call from the Endo's office this afternoon asking me to come in next week. Any clue as to why? They wouldn't even hint at a reason, but think it's about a treatment plan? I'm a newb at this, and every single thing is distressing


{{{{Abcdefg}}}}










It may not seem like it now but everything is going to be okay. I hope you know how much we care. Yes, we are all strangers to you but our virtual caring shines through......................; I hope!


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## jenny v

> Anyway, I got a call from the Endo's office this afternoon asking me to come in next week. Any clue as to why? They wouldn't even hint at a reason, but think it's about a treatment plan? I'm a newb at this, and every single thing is distressing


I'm so sorry you're having to go through this! Could you call your endo back and demand to know why they want to see you? Or, if you're not into the confrontational route, maybe ask what you'll be covering and how long that might take because you need to make sure you leave enough time in your schedule.


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## Octavia

That's a nice approach, jenny v!


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## Abcdefg

So, I've made a decision. I refuse to have a 3rd surgery, and unless my doctors do a complete workup on me before this next one (#2), I will be postponing it also. I've given this some long and hard thought, and realized I'm simply uncomfortable with my "treatment" plan so far. After all the poo-pooing, false negatives, and misdiagnoses, I have zero confidence in my treatment team.

I asked the surgeon on Monday if they'll be doing any further testing (like US, scans, bloodwork) and he said NO. ?? The fact is, I have nodal involvement, which means it could very well be elsewhere or everywhere. To make informed consent, I need to know what I'm facing. The standard SOP around here appears to be reactionary... I'm trying to be proactive. Hence playing hardball.

When I see the Endo on Thurs, I'm going to request a complete neck US, and if they won't order it, I'm canceling the surgery on Sept 7th. I know this probably seems nuts and maybe irresponsible, but I cannot live with the idea of repeatedly being sliced and diced all because they didn't do their due dilligence. My family supports this, though I'm pretty certain the doctors won't.

Any thoughts? I'd really like to hear some opinions on this. Plus, I'm curious what happens in a pre-treatment meeting (about RAI etc). I hate surprises, so this would be very helpful. Thanks so much


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## joplin1975

Ok, here are my thoughts....

1) if you feel your surgeon is incompetent or isn't caring for you propery, by all means, get a se one opinion.

2) However, before doing so, I'd make sure you have a very, very clear idea of what kind of information you want to have.

3) Keep in mind that this thyroid stuff is part art, part science. You could have the world's best thyroid surgeon and there are always going to be unknowns.

4) Most thyroid cancer grows slowly...the idea that it is everywhere is not impossible, but very unlikely.

5) No thyroid surgery will get all the thyroid cells. It is not a clean surgery. The point of RAI is to "clean up" what the surgeon left behind.

6) When you refer to a third surgery, do you mean that you are concerned that a TT won't take care of it all and you'll need another surgery? If so, see above....that's the job of RAI. Do people occasionally get surgery after a TT to cremove nodes? Yes, but that is very rare and nothing you've referenced (bloodwork, u/s etc.) can insure that you won't need a 3rd surgery.

7) Bloodwork are you interested in getting? I can't think of anything that would clarify the picture for you. You will have a higher thyroglobulin number now because you have cancer...it would be more informative to get that test after your completion surgery and RAI. By the way, I've never had one run...my surgeon (who I adore) said that the test isn't always accurate and that is even more so true for people with Hashi's...he prefer to rely on annual whole body scans.

8) I had two ultrasounds before surgery. One before the cancer diagnosis and one after...that later one was done specifically to "map the thyroid bed" and "look for suspicious nodes." Neither u/s picked up that three of my nodes were cancerous. There are limitations to u/s....I think it is informative to have one done, but not nessecary nor will it guarantee anything.

9) Also of note, I had a RAIU (also before the cancer) diagnosis. It, too, did not show any uptake in the nodes. However, I do believe it is more comprehensive than the u/s, so perhaps that's a question to ask?

10) Were I in your shoes, the most pressing question I would have is will the surgeon perform a prophylactic central neck dissection while the TT is performed? This is where the surgeon removes all of the central lymph nodes closest to the thyroid for full pathological testing. These central nodes are the first place the cancer travels. You might expect some cancerous cells in the closest nodes...what you are looking for is if the nodes farther away are clear or not. If they are not clear, you looking at more distant spread. If they are clear, it would be unlikely that there is additional spread. Andros posted a journal article a few months back that referenced central neck dissection as a key to a good long term prognosis. I'll see if I can find it.

11) Regarding the RAI, after your TT, you likely won't be given any replacement medication. The idea is to get quite hypo and have a very elevated TSH. In all honesty, it sucks a little, but it's manageable. Every doctor has a slightly different protocol, but the way it went for me was that I got a tracer dose on a Tuesday (just took a pill and went about my business), went back to the hospital on a Friday and had a whole body scan. The scan showed, as expected, presence of residual thyroid tissue. In my case there was a bunch left over. I was given 100 millicurries of radioactive iodine along with a laundry list of restrictions (how far to stay away from people, etc). I went back to the hospital on Monday to make sure the number of cells decreased significantly (they did). RAI works over a number of months, so after that, there wasn't much to do but wait until September for my annual scan.

Full disclosure, I had a really easy time with surgery, but the RAI kicked my butt. I felt like I had the flu and was on the couch all weekend. I don't think that's the usual experience, but...

12) Parting thought....I think you want to get lined up with a surgery you like and trust...but I also think its really important to get that thing outta your neck soon.


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## Abcdefg

Thanks for taking the time to answer me so fully . That is exactly the kind of info I was needing from the doctors. They are not very forthcoming.

#10 is of my greatest concern. I want them to do be thorough with the nodes, but I doubt he will be. He never even mentioned the possibility of removing any. Nor did he tell me immediately after 1st surgery that he had _already_ removed some. I found out the metastatic part from reading my path report. It says clearly on line 2 there was peri-thyroidal spread. I guess he didn't feel the need to explain to me what this was.

yes, I certainly want all the cancer out, but I don't want to be put through a seperate neck dissection after the TT because he neglected to remove visible nodes. That's the point I want to make clear to the Endo. I mean seriously, would it be a huge deal to reassure me by ordering a simple US? or RAIU?

I'm so frightened by all this right now and my head is spinning. The worst is that the doctors blow off my concerns and questions. It may be routine to them, but it's obviously not to me.

Anyway, thanks again for replying. I truly appreciate the effort you show to reassure us.


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## joplin1975

Just curious, does your path report say how many nodes were removed?


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## Abcdefg

No, no mention of #, just metastatic pap ca found in 2


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## joplin1975

Uh.

I was just thinking (and obviously, you've already covered this...I'm just babbling) that I don't *think* removal of lymph nodes is generally considered standard with a partial? I mean, you'd think that if the surgeon saw reason/concern to remove some nodes, then it would reasonable that he would remove the entire thyroid. But maybe not...we skipped over talking about partials, so I could be totally wrong.


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