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Went to the Endo yesterday!!! Left Frustrated!!!
This was my post surgery appt. Even though I hand delivered the pathology report and the surgeon sent it 2 weeks ago, he had still not reviewed it. I went in and he started talking about Horm. replacement and "guessing" what does I may need. After he discussed about "OLD SCHOOL STUFF" and how they used to do things, I told him "I don't care what they did 50 years ago or 10 years ago, I want to know what I need and what I'm goig to do!!" It wasn't until I said "What about RAI?, when am I going to do that if you are starting me on hormones now?" Then he looked in my chart and said "Oh, you DID have some cancer."
OH and when the nurse came in first to do the norm pre doc stuff, she said "so then you are here for hormones and I said NO, I think I 'm here to discuss RAI first and she asked what's that?"
Soo, the appt. went on and he said i could go home after getting the treatment but that I needed someone to help at home. I told him I have a three year old and if I was going to need 24 to 48 hours in isolations I prefer to be in the hospital. Those of you who have/had small children know how hard it's going to be to keep my son out of the room completely when we are in the same house together. Especially since we are attached at the hip! He said, "Well if you are in the hospital you are going to need someone to watch him, why can't they watch him while you are home?" I wanted to say "SH** for brains, he's 3, he isn't going to understand why mommy is in a nother room and doesn't want to see him!!!! Sick or not" Afterall, when he's sick I'm with him and holding and caring for him."
After all of this he didn't even mention the LID until I did, and still then he said "YEAH, YOU COULD!"
So, now I'm waiting for Nuclear med. department to call me today to come see them and I will asked again to be put in the hospital for 24 to 48 hours after treatment. That is suppose to be today sometime so I will let ya know!
OH and when the nurse came in first to do the norm pre doc stuff, she said "so then you are here for hormones and I said NO, I think I 'm here to discuss RAI first and she asked what's that?"
Soo, the appt. went on and he said i could go home after getting the treatment but that I needed someone to help at home. I told him I have a three year old and if I was going to need 24 to 48 hours in isolations I prefer to be in the hospital. Those of you who have/had small children know how hard it's going to be to keep my son out of the room completely when we are in the same house together. Especially since we are attached at the hip! He said, "Well if you are in the hospital you are going to need someone to watch him, why can't they watch him while you are home?" I wanted to say "SH** for brains, he's 3, he isn't going to understand why mommy is in a nother room and doesn't want to see him!!!! Sick or not" Afterall, when he's sick I'm with him and holding and caring for him."
After all of this he didn't even mention the LID until I did, and still then he said "YEAH, YOU COULD!"
So, now I'm waiting for Nuclear med. department to call me today to come see them and I will asked again to be put in the hospital for 24 to 48 hours after treatment. That is suppose to be today sometime so I will let ya know!
I'd start with a new endo, and I wouldn't be shy about telling them that at your last one, even though they were provided with all of your records, YOU had to tell THEM that you had cancer and he said he "guessed" you could do RAI. I still can't believe that - what a yahoo.
Have you heard from the nuclear medicine people? They are the ones who will set up you RAI, so I would talk to them about hospitalization versus going home. They can help you check w/your insurance co. and such.
Good luck and keep us posted!
Have you heard from the nuclear medicine people? They are the ones who will set up you RAI, so I would talk to them about hospitalization versus going home. They can help you check w/your insurance co. and such.
Good luck and keep us posted!
Well, i guess if all else fails with insurance I can go to Florida to the Navy hospital. I don't really have anywhere I can stay without contaminating them. I mean my mother is already hypo, she's alone so lives in a studio apartment, I have 2 children here in Ga. and my husband has a roommate in Fla. who is also a Marine and doesn't care to be anywhere around me during that time!!!!!
I'm trying to figure it out, maybe maybe a friend can help!!???
I hope to figure it out. Or maybe TriCare will cover it!
Who knows?
I'm trying to figure it out, maybe maybe a friend can help!!???
I hope to figure it out. Or maybe TriCare will cover it!
Who knows?
My insurance pre-authorized & covered my in-hospital stay for RAI... I think it depends on your state and your insurance.
Well I am the queen of crazy notes with the doctors - so I'll tell you. If you leave this office be prepared to start all over -- and that stinks!!
Can you stay at a parent or someone's house for those days?
The reason I asked is you can be admitted - but no insurance will cover you. It is NOT in the guidlines for this therapy. and you could winde up paying thousands for a hospitol bill.
Good Luck - I hope it goes well - I think you having the "boss" rains on your endo now is a good thing. You know what you need to do to get better. He may be good. Talk to him about the thyrogen therapy - it might save you from hypohe// and he sounds like someone you can steer a bit.
Can you stay at a parent or someone's house for those days?
The reason I asked is you can be admitted - but no insurance will cover you. It is NOT in the guidlines for this therapy. and you could winde up paying thousands for a hospitol bill.
Good Luck - I hope it goes well - I think you having the "boss" rains on your endo now is a good thing. You know what you need to do to get better. He may be good. Talk to him about the thyrogen therapy - it might save you from hypohe// and he sounds like someone you can steer a bit.
I had Pap cancer with follicular variant removed September of last year. I had RAI in November. I went to an endo who was extremely well recommnded by at least two of my close girlfriends, and technically has a closed practice, but I guess for cancer, he's open for business...
Before RAI he laid out the entire process and time line for me. I got info from the hospital about LID and the RAI proceedures. The hospital tried to convince me to go home after I got the RAI pill. My husband and I thought it only prudent that I be in the hospital for the RAI because we have a five year old, a dog and a cat. Aside from them not truely understanding the "Mom has to be away" right now, I didn't want to expose our small child, who already had a familial pre-disposition to thyca (me), to radiation as well (from me). They made me jump through hoops, but I did stay in the hospital for two days. Afterwards, I told my daughter I could give her "short hugs" and made her wait for the "long" ones...
After the scan and recovery from RAI, I went in to my "highly recommended" endo, and he didn't even have the RAI scan results to go over with me!!! I was pissed to say the least. I made them call and get them, and go over everything with me inch by inch. All endo's to some degree want to pat you on the head and raise or lower your meds and send you off into the world to see how you "do"...
The last time I went, he had had a patient who had severely compromised his schedule prior to me, so I got ZERO of his time, and I had a huge list of questions! I have had to ask him to test me for things I've learned about here on the forum and have diagnosed myself with a couple of different issues! I think given the resources for testing and insurance approval, most of us could do much better than at least half of the people in the medical & insurance professions... :-O A VERY SAD STATEMENT!!
My best advice is always to be your own advocate, and LOUDLY! And keep up with the forum for a great knowledge base and advice. Keep us updated, and good luck!
Before RAI he laid out the entire process and time line for me. I got info from the hospital about LID and the RAI proceedures. The hospital tried to convince me to go home after I got the RAI pill. My husband and I thought it only prudent that I be in the hospital for the RAI because we have a five year old, a dog and a cat. Aside from them not truely understanding the "Mom has to be away" right now, I didn't want to expose our small child, who already had a familial pre-disposition to thyca (me), to radiation as well (from me). They made me jump through hoops, but I did stay in the hospital for two days. Afterwards, I told my daughter I could give her "short hugs" and made her wait for the "long" ones...
After the scan and recovery from RAI, I went in to my "highly recommended" endo, and he didn't even have the RAI scan results to go over with me!!! I was pissed to say the least. I made them call and get them, and go over everything with me inch by inch. All endo's to some degree want to pat you on the head and raise or lower your meds and send you off into the world to see how you "do"...
The last time I went, he had had a patient who had severely compromised his schedule prior to me, so I got ZERO of his time, and I had a huge list of questions! I have had to ask him to test me for things I've learned about here on the forum and have diagnosed myself with a couple of different issues! I think given the resources for testing and insurance approval, most of us could do much better than at least half of the people in the medical & insurance professions... :-O A VERY SAD STATEMENT!!
My best advice is always to be your own advocate, and LOUDLY! And keep up with the forum for a great knowledge base and advice. Keep us updated, and good luck!
Wow, that's awful. It sounds like you found a complete moron. . . did the surgeon recommend this doctor for you??!! Maybe that would be a good place to start.
I just switched endos because the first one I had basically patted me on the head and said here's some meds (levoxyl), see you in a year! The nodules on my thyroid kept getting bigger and bigger (and bigger!), so finally I said enough is enough and just switched to another endo in the same hospital. She was much more understanding, switched my meds and said check the levels in 6 weeks (a lot less than 52!) and why don't we biposy again (I had a biopsy in 2005). *That's* how I found out I have papillary cancer. If I stayed with the other guy, it would have been more meds and see you in a year!
We are our own best advocates, when we finally have had enough!
Good Luck!
Tricia
I just switched endos because the first one I had basically patted me on the head and said here's some meds (levoxyl), see you in a year! The nodules on my thyroid kept getting bigger and bigger (and bigger!), so finally I said enough is enough and just switched to another endo in the same hospital. She was much more understanding, switched my meds and said check the levels in 6 weeks (a lot less than 52!) and why don't we biposy again (I had a biopsy in 2005). *That's* how I found out I have papillary cancer. If I stayed with the other guy, it would have been more meds and see you in a year!
We are our own best advocates, when we finally have had enough!
Good Luck!
Tricia
Thanks for the support everyone!!! I am searching as we speak for a new endo! I am so upset, i am flustered and I need to make a list of things to ask or talk about when I make the new appointment. Should I explain my reasons for a new doctor to the *NEW* doctor? I mean I guess he/she will ask, but will that put a bitter taste in their mouth or label me as difficult from the beginning?
HELP HELP!!
HELP HELP!!
Find a new endo fast. If this one can't be bothered to read your chart before he sees you and doesn't seem to know what to tell you when you're in his office, do you really want this man treating you? I wouldn't trust anything he says, and that's hardly the frame of mine I'd want to be in when someone is treating me for something as significant as cancer.
GRRRRRRRR - what a frustrating visit for you. I am so annoyed for you!
Can you see a different endo? This one sounds completely incompetent...what a jerk to not even read your chart and brush aside your concerns about your family. Unreal.
I hope the nuclear medicine people are a million times better. Mine called me yesterday, and they were really on top of their game about RAI, LID, etc. I hope you find the same - perhaps since it is their specialty you will find them infinitely more helpful and understanding. Maybe they can recommend a new endo for you, too. I'd beg them to do that!
Good luck, Trica, and keep us posted!
Can you see a different endo? This one sounds completely incompetent...what a jerk to not even read your chart and brush aside your concerns about your family. Unreal.
I hope the nuclear medicine people are a million times better. Mine called me yesterday, and they were really on top of their game about RAI, LID, etc. I hope you find the same - perhaps since it is their specialty you will find them infinitely more helpful and understanding. Maybe they can recommend a new endo for you, too. I'd beg them to do that!
Good luck, Trica, and keep us posted!
Wow, and I thought my doc was a ding ****! When I was getting ready for RAI my endo handed me a packet of papers to read and keep. Out of about 7 pages of literature from HIS office I had 4 different amounts of time I needed to be isolated. One paper said 4 days, one said 7, one said 10 and one said 12. I asked him personally and he said "oh, about 3 three should be fine. Then 10 days after RAI I had my scan and asked to be measured with the geiger counter and the radiologist said "you still need 3 more days of total isolation. Go figure. Now we're playing "guess how much medicine I need." Such good times......if I didn't have a sense of humor about it I think I'd have choked him by now.
Sounds like you need a new Endo!
Imagine what that appointment would have been like before the Internet, when you wouldn't have been able to prompt him for treatment options. I don't know about you, but I have learned sooo much from this forum. It is a true BLESSING!
Good luck with the nuclear folks.
- Viv
Imagine what that appointment would have been like before the Internet, when you wouldn't have been able to prompt him for treatment options. I don't know about you, but I have learned sooo much from this forum. It is a true BLESSING!
Good luck with the nuclear folks.
- Viv
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