# AHHH! Beyond frustrated! Who do I see?



## sonnyjane (Oct 6, 2011)

*** I updated in post #10 of this thread...***

I was diagnosed with Papillary Thyroid Cancer on 10/3. My doctor wrote me referrals to an oncologist and an endocrinologist. I made an appointment with the endocrinologist for yesterday, 10/14. When I called to make an appointment with the oncologist, I was told that my referral was not approved because the endocrinologist would be the one dealing with my surgery, etc. Fine. I don't know what I'm doing so I didn't know any better to challenge them!

Well, yesterday at the endocrinologist, after waiting in the waiting room for 15 minutes and waiting in an exam room for 40 minutes, I finally walked to the front desk and asked what was going on. They told me that they were trying to get in touch with my doctors but weren't having any success. Basically, they said there is nothing they could do for me until after I had surgery. AHHHH! I called my insurance company and asked them what was going on and they said I needed a referral to a surgeon. I called my doctor and explained the situation and they seemed just as confused. They promised to get back to me ASAP, but since it was 4:00PM on a Friday, I'm not surprised I didn't hear back and now I have to wait until Monday to talk to someone, but I'm not even sure who to talk to!

For you guys that have done this, who did you go to first? A surgeon!? I need to know who to tell my doctor to refer me to. I'm just so frustrated! I feel like I wasted two weeks waiting for this appointment only to find out that they can do nothing for me, and now who knows how long it will take to see the RIGHT person - whoever that is!? I just want this cancer OUT of me!


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## webster2 (May 19, 2011)

I am so sorry that you were treated like this, what a run around. I saw an endo first because Graves had been diagnosed but already had a surgical referral in hand. The practices I was seen at consider how the patient wants to deal with Graves...surgery, ATD's or RAI. So, I knew I was having surgery before the cancer was discovered.

Anyway, an ENT would be a good surgeon to get an appointment with. Just make sure they do plenty of thyroid surgeries weekly. You want a reputable experienced surgeon.

Are you to view the surgeon's profiles on the hospital's web site? I was really grateful to be able to do this, and selected one or two that specialized with thyroids and in the care of professional voice, even thought I don't sing. I met with both of them, chose one, and they both consulted, and visited me during my hospital stay.

I am sure the others that have been recently through this too will offer suggestions to you. Don't fear you are in good hands here!


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## CLRRN (Jun 22, 2011)

Oh my gosh....you poor thing!! What a pain and very frustrating.

I started w/PCP and she referred me to the ENT (that's who did my surgery). I don't need a referral w/my insurance but still was "referred" to the ENT. After I saw the ENT, he suggested that I see the ENDO just as a second opinion w/the decision to have a partial thyroidectomy (had a nodule on L thyroid and the fine needle aspirate wasn't definitive for cancer but still had to follow the 'standard of care' route).

So I can relate. Both ENT/ENDO said "most of follicular nodules are benign and a partial thyroidectomy is all you will need or you can wait 3 months, have another sono. NOPE...sign me up for surgery and it was cancer and I had 2 surgeries but it's all good.

I know that was a long response but I do know the ENDO will do the follow up after surgery and will manage your care after your surger. Generally oncologists don't follow thyroid cancer patients (at least that's not our experience) We did reach out to our oncologist (my partner had Stage 4 tonsil cancer last year) and he said we didn't need to see him unless it spread outside the thyroid and the ENDO would follow me.

Hope that helps!! Stay in touch and take a deep breath. There is NOTHING fast with any of this and it requires lots of patience. It's our PROCESS.

Chris


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## sonnyjane (Oct 6, 2011)

Thanks guys. I have military insurance which makes this both a blessing (everything is free) and a curse (I have a limited selection of doctors). ENT doctors (or surgeons for that matter) are not on my list of specialty doctors when doing a search. For surgeons, the closest I can get is "Surgeon (General)".

Bleh...


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## webster2 (May 19, 2011)

Well, that's ok too. Try to see if one has plenty of thyroid experience. Military doctors are very good. Try searching otolaryngologists too, it is the same thing. My dad was career AF, and they had their own language.....instead of saying long johns, it was "drawers, extreme cold weather". So maybe ...


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## sonnyjane (Oct 6, 2011)

webster2 said:


> Well, that's ok too. Try to see if one has plenty of thyroid experience. Military doctors are very good. Try searching otolaryngologists too, it is the same thing. My dad was career AF, and they had their own language.....instead of saying long johns, it was "drawers, extreme cold weather". So maybe ...


Ahhh webster, thank you! I had never even heard that term before but yes, it is on the drop-down menu for specialists with Tricare! Now I have a starting point on Monday morning when I start my day of phone calls!!! I'm so glad I found this place!


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## CLRRN (Jun 22, 2011)

Yeah!!!! Go get 'em sonnyjane


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## joplin1975 (Jul 21, 2011)

Oh how frustrating!!!

FYI -- My lump was found by my GYN, who referred me back to my PCP, who referred me to an endo and a surgeon. I set up appointments with both and schedules worked so that I saw the endo on a Wednesday and the surgeon the next day on a Thursday.

My surgeon is a general surgeon, but he specializes in thyroid & parathyroid surgery (about a dozen a week).

Good luck!


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## Andros (Aug 26, 2009)

sonnyjane said:


> I was diagnosed with Papillary Thyroid Cancer on 10/3. My doctor wrote me referrals to an oncologist and an endocrinologist. I made an appointment with the endocrinologist for yesterday, 10/14. When I called to make an appointment with the oncologist, I was told that my referral was not approved because the endocrinologist would be the one dealing with my surgery, etc. Fine. I don't know what I'm doing so I didn't know any better to challenge them!
> 
> Well, yesterday at the endocrinologist, after waiting in the waiting room for 15 minutes and waiting in an exam room for 40 minutes, I finally walked to the front desk and asked what was going on. They told me that they were trying to get in touch with my doctors but weren't having any success. Basically, they said there is nothing they could do for me until after I had surgery. AHHHH! I called my insurance company and asked them what was going on and they said I needed a referral to a surgeon. I called my doctor and explained the situation and they seemed just as confused. They promised to get back to me ASAP, but since it was 4:00PM on a Friday, I'm not surprised I didn't hear back and now I have to wait until Monday to talk to someone, but I'm not even sure who to talk to!
> 
> For you guys that have done this, who did you go to first? A surgeon!? I need to know who to tell my doctor to refer me to. I'm just so frustrated! I feel like I wasted two weeks waiting for this appointment only to find out that they can do nothing for me, and now who knows how long it will take to see the RIGHT person - whoever that is!? I just want this cancer OUT of me!


Welcome to the board!!

Good grief! I sure hope this all gets straightened out and in a hurry! A lot of folks here have seen an ENT (ear,nose and throat.)

What led to this diagnosis? Were you symptomatic? Prior thyroid problems? When you have the time, I am sure we would all like to know.

Meanwhile, you will get plenty of support and information from all of us.


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## sonnyjane (Oct 6, 2011)

This is the least fun game EVER! I've left a message for my doctor to see if she can explain this, but they are being painfully slow about returning phone calls 

Okay, so the endocrinologist said that they can't help me until I actually have the surgery, and they told me that I would need to get a referral and see a surgeon first and that after surgery, they would be the ones helping with my hormone levels. Okay...

Well, I did that and called my doctor and they said they submitted a referral for what they told me was a surgeon.

I logged into my insurance site and it says that I have referrals pending with...guess who... the same endocrinologist! It says that I am supposed to go in for nasal endoscopy, nasopharyngoscopy, pure tone hearing test, and diagnostic laryngoscopy. I have already been positively diagnosed for Papillary Thyroid Cancer through a biopsy. What are these additional tests for? Are these things that I need to have before I can see a surgeon? Do I need to get back on the phone and demand that they set up a surgeon appointment? BAH!


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## Octavia (Aug 1, 2011)

Yes...it sounds like they've made a mistake. You need to see an ENT/Otolaryngologist. They are surgeons, and many of us who have had thyroidectomies had them done by ENTs. Some went to General Surgeons...if you do that, just be sure that person does plenty of thyroidectomies. The good thing about ENTs is that they are also highly trained in plastic surgery and head/neck surgery, whereas the General Surgeons are more...well...general. 

I love your thought, "This is the least fun game EVER!" That pretty much sums it up!

ENT...ENT...ENT...


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## sonnyjane (Oct 6, 2011)

Octavia said:


> Yes...it sounds like they've made a mistake. You need to see an ENT/Otolaryngologist. They are surgeons, and many of us who have had thyroidectomies had them done by ENTs. Some went to General Surgeons...if you do that, just be sure that person does plenty of thyroidectomies. The good thing about ENTs is that they are also highly trained in plastic surgery and head/neck surgery, whereas the General Surgeons are more...well...general.
> 
> I love your thought, "This is the least fun game EVER!" That pretty much sums it up!
> 
> ENT...ENT...ENT...


Thank you for your reply! I'm currently on hold to try to figure out what the H is going on lol! I did talk to my original doctor and they said that they put in for a general surgeon, since that's what my insurance told me, but that the referral hasn't posted yet. I'm thinking maybe I should push to just get referred to an ENT instead? Meh...


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## Octavia (Aug 1, 2011)

Well, you could have success with either. The most important part is "How many thyroidectomies have you done recently?" Just be sure to work with someone who is experienced.


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## CLRRN (Jun 22, 2011)

Agreed this is the "least fun game" BUT..... I love love love my ENT


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## Octavia (Aug 1, 2011)

CLRRN said:


> Agreed this is the "least fun game" BUT..... I love love love my ENT


I love my ENT as well!!!! He's a great guy...a bit on the nerdy side, but nice as can be, and great bedside manner! Honestly, if he wasn't my doctor, and we ran in the same circles, I'd totally be friends with him. I'm so glad I found him!!!


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## sonnyjane (Oct 6, 2011)

Octavia said:


> I love my ENT as well!!!! He's a great guy...a bit on the nerdy side, but nice as can be, and great bedside manner! Honestly, if he wasn't my doctor, and we ran in the same circles, I'd totally be friends with him. I'm so glad I found him!!!


When it comes to MY doctor, they can be as nerdy as they like lol! Alright, so as of close of business day, I have a referral for an ENT AND one for a general surgeon pending. I don't have to use them both, but both were submitted by different doctors unbeknownst to the other. I'll call the ENT tomorrow and if they are who I really want, I won't need the general surgeon one.


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## Octavia (Aug 1, 2011)

That's great news, sonnyjane!!! It won't hurt to meet with both of them and see whose skills you are more confident in. Just remember, surgeons sometimes don't have the best bedside manner, but that's okay, as long as they're great at the surgery part!


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## SnoodMama (Jan 11, 2011)

Yeah it sounds like they entered somebody else's data for you. It just looks like a mistake. You definitely need to get on the phone. It is so frustrating. But you just have to keep on pushing and calling. Like a freaking full time job. I'm so sorry.


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## Andros (Aug 26, 2009)

sonnyjane said:


> Thank you for your reply! I'm currently on hold to try to figure out what the H is going on lol! I did talk to my original doctor and they said that they put in for a general surgeon, since that's what my insurance told me, but that the referral hasn't posted yet. I'm thinking maybe I should push to just get referred to an ENT instead? Meh...


Oh, yeah.....................push for ENT. They do more thyroid surgery on average.


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## Octavia (Aug 1, 2011)

SnoodMama said:


> Like a freaking full time job.


Geez...isn't that the truth!!?? It should be that hard...


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