# To wait for Anderson in Houston or not?



## kidsabc (Feb 20, 2013)

On February 12, my biopsy showed suspicious for Papillary Carcinoma. I think that combined with my ultrasound calcifications, ill-defined margins, and hyperechoic... have them almost certain its cancer. Would you agree? So now I'm having a hard time mentally wrapping my head around this diagnosis (I have 8 children and the youngest is 1 year old) and have so many questions.... I've been reading every single post on this thread (thanks they are so helpful). Any advice for how you finally came to "look at things"?

Other questions:
- Should I wait the month to get into MD Anderson or get it done at Mayo in Florida sooner?
- Anderson, versus Mayo, versus Sloan Kettering....opinions?
- How often does recurrance happen? Is it really a struggle to keep the cancer in check your whole life?
-How much does this diagnosis shorten our expected life span?
-I know the good prognosis, but can't help but spaz that I might be in "the 5%"...thoughts?

Thanks!!!


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## jenny v (May 6, 2012)

Welcome kidsabc and sorry for the circumstances that brought you here.

Question for you, when you say "Should I wait the month to get into MD Anderson or get it done at Mayo in Florida sooner?", do you mean having the surgery at either of these places or just more follow up?


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## kidsabc (Feb 20, 2013)

Sorry, I should have stated that... should I wait a month for surgery. I'm scheduled at Mayo in ten days to have a TT, but my husband would like for me to go to Anderson, but thats proving hard to get an appt. soon.

Thanks.


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## Andros (Aug 26, 2009)

kidsabc said:


> On February 12, my biopsy showed suspicious for Papillary Carcinoma. I think that combined with my ultrasound calcifications, ill-defined margins, and hyperechoic... have them almost certain its cancer. Would you agree? So now I'm having a hard time mentally wrapping my head around this diagnosis (I have 8 children and the youngest is 1 year old) and have so many questions.... I've been reading every single post on this thread (thanks they are so helpful). Any advice for how you finally came to "look at things"?
> 
> Other questions:
> - Should I wait the month to get into MD Anderson or get it done at Mayo in Florida sooner?
> ...












Many choices! Does your doctor have any input on the matter? Is there a rush? Do you feel comfortable waiting?

Glad you are here but sorry for the reason. I think you will find much help, info and support here.


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## joplin1975 (Jul 21, 2011)

Waiting a month or so for thyroid surgery, even for cancer, isn't that big of a deal. As Andros said, what's most important is if you feel comfortable with your surgeon. I had my TT at a mid-sized regional hospital w/ a general surgeon (not a specialist) for thyroid cancer and had a fantastic outcome.


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## susieintexas (Mar 4, 2012)

Honestly I think it is like saying should I go to Harvard or Yale. I think both Mayo & Andersson are awesome. Which is closer, cheaper to travel for you?

I am a patient at MD Andersson so I can offer advice if you go that route. I was very impressed with my team and the team approach in general but I have a good friend who lives in FL and goes to Mayo and loves it.

None of us are statistics so it is impossible to tell if your cancer will reoccur because someone else's did or did not. They assured me mine would not after my TT. I also had a benign FNA. At some point you learn to roll your eyes and realize they are just giving you their best guess. To your other questions, yes it can come back, mine did.

Take a deep breath. Know you are seeing the best Drs and usually it is very easy to treat. With a baby at home you will need help for about 10 days after surgery. After you have RAI you will also need someone to stay with them for about a week until you don't 'gl ow' anymore. Worry about things you can do, get childcare setup, make freezer meals, and let the Drs worry about the medical side. It can be crazy scary and overwhelming.

(hugs)


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## Lovlkn (Dec 20, 2009)

My vote is to go to the closest hospital - in agreement that waiting a few weeks at this point isn't a big deal.

My suggestion is to keep ice on your incision to keep it cool and help with swelling - That alone is going to remove a bunch of discomfort.

I did not have cancer - I waited to remove my thyroid thinking what a poor girl the friend I had at the time who had cancer. She had hers removed - did the RAI and went on with her life. I suffered taking anti thyroid medications for 4.5 years then another 2 years to get my replacement right. It's all perspective - you will do great!

Ask for some Lorazapam to help calm your nerves.


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## webster2 (May 19, 2011)

Welcome, sorry for what brings you here. Go where you are the most comfortable with the surgeon. Try not to stress too much. It is kind of scary in the beginning but it is not so bad, really.


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## kidsabc (Feb 20, 2013)

Thanks so much for your replies. I feel really confident with Anderson, but am worried about the distance. My thoughts were that maybe I would have the initial treatment there and get established.... then do all the small follow-up stuff locally. Does that sound responsible? As for the nerves, I've talked to 5 people that had been diagnosed with thyca, and none of them seem worried AT ALL. Which makes me feel a little abnormal worrying so much... maybe I just need some advice on how to wrap my thoughts around this in a positive way... any thoughts?


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## kidsabc (Feb 20, 2013)

SusieinTexas I would liketo hear more about your experience with Anderson. Also, what does PTH High mean in reference to your medical history. DO you still trust them after they told you with confidence that it wouldn't return? How long did the scared-to-death feeling last and how did you finally move past it?


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## webster2 (May 19, 2011)

Hearing the "c" word associated with your own body is a bit earth shattering. Thyca seems to be on the rise. I am sure you will find more people locally that have had it. Once you have a treatment plan, I am sure you will feel a bit more at ease.

You will find lots of folks here that have had it and are doing quite well. Hang in there!


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## I DClaire (Jul 31, 2011)

I live app. 4 hours from Houston, in Louisiana. M. D. Anderson is so popular here that there has never been any doubt in my mind where I'd want to go if I were ever diagnosed with cancer. You can talk to anyone who has ever been there and they'll practically say the same thing - "I was treated as though I was the most important patient there!"

I have a friend here who has been undergoing 6-month follow-up trips back to M. D. Anderson after surgery there for a rare, aggressive breast cancer and she raves about not only the care she was given but also how support personnel helped her family.

By the same token, I have a neighbor who had a malignant tumor the size of a golf ball (which she found applying moisturizer one night) and she chose to have surgery and treatment here because she wanted to stay close to family, co-workers, etc., and she did fabulously well.

I know it's a hard decision - pursue every question you have until you feel confident you're making whatever choices are right for you. I cannot even imagine having to try to work through all this with little children to be considered. I hope you have a super support system!!


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## susieintexas (Mar 4, 2012)

kidsabc said:


> SusieinTexas I would liketo hear more about your experience with Anderson. Also, what does PTH High mean in reference to your medical history. DO you still trust them after they told you with confidence that it wouldn't return? How long did the scared-to-death feeling last and how did you finally move past it?


I was originally treated in Dallas at UTSouthwestern. They are the ones who told me it would not come back. I didn't transfer to MD until it came back and my surgeon up here said that I would loose my voice when she removed the new tumor. I am 32 so significant, permanent voice loss is a HUGE deal for my quality of life. She wanted to do the surgery the second week of Dec. Joplin suggested I get in touch with MD. On getting my initial info they told me it would be mid Jan before they could see me. They reviewed my records and were able to squeeze me in the very next week so I was able to get my second opinion before I had the second surgery. I am so thankful for that.

I had a team there. I had the Endo Onc team, the Endo surgical team (the woman- a beautiful red head, I don't remember her name) and this time when I go back I am also seeing the vocal cord team. We are watching my mets until we can't watch them anymore so that I can keep my voice for as long as possible. I don't know if it will be 6 mths or a year or 5 years- the endo onc made no 'guesses', just that we would keep out of my neck for as long as was safe.

PTH is Parathyroid hormone. Mine like most was check the first time after my TT because when they have to transplant the parathyroids sometimes they can be damaged. Mine was high which is odd and has stayed high. It coupled with high Cal can cause things like kidney failure, heart damage, etc. Right now my kidneys excrete 3 times the amount of cal that they should. No one knows why as nothing showed up on my parathyroid scans.

For me, I loved MD. I stayed at the Crown Plaza River Oaks and the MD rate is $64 + $4 to park. It was nice and comphy and I will stay there again. The hotel has a free shuttle to and from MD that runs every half hour so you don't have to pay to park. I had to have some radiation so I wasn't safe to be around my kids for 3 days so I stayed there a few extra days after my appts. The shuttle also will take you to the galleria mall if you want to get out of the hotel which was nice. MD itself I found easy to navigate, esp with the golf carts. I only had one 'oh sh!t' moment when during the middle of a nuclear scan they pulled me and sent me to the surgeons office. Turns out it was just the only time she could squeeze me in but it scared me to death because all the rad team knew was the surgeon called and needs to see you now! Oh and come back when you are done with her. lol

I would be very surprised if they give you a treatment plan to follow at home. I had to transfer my care to them. If I need anything, even just labs, I have to go there which I am ok with because I am confident I am getting the best care there.

For me, I am only calm when I don't think about it. I am sure that makes no since but if I am busy with our normal routine soccer, taekwondo, gymnastics, homeschooling, I don't worry AS much but it is still there. After all my kids are my life and they need a functioning mama. I tried zoloft to help with the anxiety but it slowed my weight loss and I am trying my best to get to a healthy weight. I have lost 70lbs over the last year but I still have 70 to go to be where the gov't says I should be.


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## kidsabc (Feb 20, 2013)

Susieintexas-

Thanks so much for the super helpful Anderson info. I plan to stay at that hotel if I end up going there. Maybe you can shed some light on what I should expect for "follow-up" care? Would it even be doable with 8 kids (I homeschool too!!) and living in Florida... to commute to Anderson for every blood test?

As for your voice, are they sure it will be lost with surgery? Or just a high percentage?

This is the first time in my life I think I might actually need meds to calm down... I don't know. I've always been a calm and bubbly personality- but, boy, I'm in a dark place right now. I know it hasn't even been two weeks since I found out, and I haven't even had a real conversation, with a real doctor, since my diagnosing was given over the phone and I'm electing to go to Mayo or Anderson for care... maybe I will feel better with time and answers? I know 5 local people have thyroid cancer, but NONE of them even seemed remotely worried so that's great for them, but not much help (I wish I could be like that!!).

Thanks again!


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## Lovlkn (Dec 20, 2009)

kidsabc said:


> Sorry, I should have stated that... should I wait a month for surgery. I'm scheduled at Mayo in ten days to have a TT, but my husband would like for me to go to Anderson, but thats proving hard to get an appt. soon.
> 
> Thanks.


Mayo in Florida? Who's your surgeon and are you comfortable with them?

I believe there are alot of excellent surgeons - you need to go to whom you feel the most comfort with.


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## susieintexas (Mar 4, 2012)

I have not had surgery with them, so I can't answer that. I know that all of my testing they did up here, they redid down there and I have to go back there in June to have them all rerun again. If I am having an 'issue' I can go to my PCP to have blood labs run but anything more than blood, they do it there.

Doable is all relative. What some would say is impossible, others make work and it is no big deal. For me the travel, was actually kind of nice to have a little break. It was lonely because my hubby was in Dallas with the boys but overall it was no biggie.

Are you having surgery then or just your first appts? With me my initial appointment lasted 4 business days (Thur-Tues).


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## Octavia (Aug 1, 2011)

Whatever you husband's reason for wanting you to go to Anderson, if you agree with it, waiting a month isn't likely to change your prognosis. You could probably flip a coin.

My impression, as incorrect as it may be, was that Mayo and Anderson were "reserved" for non-standard cases, medical mysteries, patients who haven't been receiving proper treatment elsewhere. Most thyroidectomies are not those types of cases, so the fact that you can have surgery at either place is already kicking it up a notch, compared to what most of us got.


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## susieintexas (Mar 4, 2012)

I thought that too but when I was there and chatting in waiting rooms I found that not to be the case. Some had re-occurrences like me but most (7 out of 10) were initial diagnoses that were getting ready to have a TT. I believe they all had cancer positive FNAs for as best I can remember.


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## Octavia (Aug 1, 2011)

Oh, that's interesting, Susie. Huh. I've read a few people on here who were turned down at Mayo because they were too "average" despite having numerous unsolved medical issues, so I was assuming they must be pretty selective about who they see. That's good that they may not be as selective as I thought they were. Thanks for sharing.


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## kidsabc (Feb 20, 2013)

SusieinTexas- Weeeeellll, after much thought, I decided to wait for Anderson. I feel with my apprehension level, it is best for me to go to some place that I really trust and get the best care from square 1 (as qualified in my own head). Just got off the phone with them, and I can see surgeon Dr. Clayman on 3-13. It's so mentally hard to wait and not really know what is going on inside my neck, but I'm hoping that it will all be worth it in the end... do you know Clayman? Do you think I'm doing the right thing by waiting?

Also, I had a 'suspicious for papillary carcinoma' and was able to get into Anderson and request the surgeon that I wanted (I had googled them) which is pretty awesome. I did have a hard time getting the appt. though... new pt staff dropped the ball several times (lost faxes, etc). Hopefully, that is no reflection on the rest of the experience


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## susieintexas (Mar 4, 2012)

Octavia said:


> Oh, that's interesting, Susie. Huh. I've read a few people on here who were turned down at Mayo because they were too "average" despite having numerous unsolved medical issues, so I was assuming they must be pretty selective about who they see. That's good that they may not be as selective as I thought they were. Thanks for sharing.


They did make it 'hard'... I had to submit medical records(twice), get more records, deal with a 3rd party to obtain actually tissue samples from my original surgery in addition to the reports, telling me it was a 3 month wait, until they reviewed my chart and then it was, "Can you come on Thurs?"  Someone on here said that though, if they think it is important, they will get you in. My guess is if you have a PTC diagnoses and are willing to wait (which most aren't) you can be seen.


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## susieintexas (Mar 4, 2012)

kidsabc said:


> SusieinTexas- Weeeeellll, after much thought, I decided to wait for Anderson. I feel with my apprehension level, it is best for me to go to some place that I really trust and get the best care from square 1 (as qualified in my own head). Just got off the phone with them, and I can see surgeon Dr. Clayman on 3-13. It's so mentally hard to wait and not really know what is going on inside my neck, but I'm hoping that it will all be worth it in the end... do you know Clayman? Do you think I'm doing the right thing by waiting?
> 
> Also, I had a 'suspicious for papillary carcinoma' and was able to get into Anderson and request the surgeon that I wanted (I had googled them) which is pretty awesome. I did have a hard time getting the appt. though... new pt staff dropped the ball several times (lost faxes, etc). Hopefully, that is no reflection on the rest of the experience


No, I saw Sherman & Grubbs. I had to send my records twice too. I also had to round up CDs from each of my tests up here (at $25 a pop). Do they plan on doing the surgery then, in that initial set of visits? Is the whole family going or just you? I don't know if you have a co-pay or deductible but be prepared to pay a new copay at each stop. For example I had 5 stops on my first day and I would have had to pay 5 co-pays. I had a friend who had to have money wired because he spent $200 in co-pays on his first day because he thought it would be one co-pay. Luckily when I went my out of pocket max had been met so my ins paid 100%.


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## kidsabc (Feb 20, 2013)

Thanks for all the great info again! I think Dr. SHerman is going to be my endo, do you like him? My first visit is for a consult and tests and they wouldn't tell me how long I would be there or when they can schedule the surgery (they say its up to the surgeon's schedule and OR schedule) which also makes no sense to me because I can't even schedule a return flight home until I'm there...? At the Mayo Clinic, they give you an iternary and check you in and move you effortlessly throughout the day (and NO co-pays). I love all of that, but the Jacksonville clinic is ranked like #33 and Anderson is #1 sooooooo...... I am going by myself I think, but it scares me. Too hard leaving all the kids in Florida. I'm going to stay at the hotel you suggested. I am anxious to 'get on' with all this and so apprehensive at the same time.


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## susieintexas (Mar 4, 2012)

Me either. They told me my first appointment would last 3-5 business days. I was like "excuse me"?! lol I highly suggest Spirit for cheap airfare. Hubby flew home from Houston after my first day and I think it was $48.

MD Works the same way. They give you a schedule but each stop is a new co-pay. It is all computerized so if your CT runs late they know and just adjust all of the following appointments.

I really love Sherman. He is an amazing man with a very compassionate manor. Are you on facebook? If you want to friend me, you can look on my timeline at the things I did and places I went when bored. There is a great little sweet shop, a pottery painting place, the mall of course. I also had my hair done while I was there just because.


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