Here I am at MD Anderson

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CypressCynthia
CypressCynthia Member Posts: 4,014 Member
Arrived promptly at the Mays Cancer Center (a small part of MD Anderson but huger than most hospitals) at 7 AM. My first impressions: very, very huge place with very futuristic look; many bubbly zen-like fountains and scuptures; many saltwater aquariums; everything pristine. That is my photo in front of one of the bubbly scupture things.

To be honest, it makes me somewhat wary.

As a child, my dad (a physician and a scholar) would often pick the physicians with the absolute worst, most spartan looking offices. If I questioned his reasoning, he would tell me that the doctor was brilliant and it was what was between the ears that mattered--not the smoke and mirrors.

This place is a lot of bling--dazzling bling. It puts my guard up--even though I realize that it contains some of the very best physicians and equipment in the entire world.

But think if some of that aquarium/fountain/bubbly money went straight to research....

My appointment: my physician said she was "99.9% certain" that they would not have changed me from arimidex/zometa to xgeva/faslodex because of my tumor markers alone. I mentioned that we were also a little concerned about my foot and foot pain and she immediately ordered foot xrays, an MRI and another PET scan even though I just had one in July (because their PET scan is far superior). Maybe another bubbly thingy...lol.

She also said that she felt that I was committed to the xgeva/faslodex now and she wouldn't recommend a change there. She said I could always go back to arimidex if it looked like the faslodex wasn't working.

Then, to top it off, I was told that I needed to come back next week to have the MRI and PET scans as my insurance will not ok it until Monday??? I had taken the whole week off per their recommendation in order to get all of this crap done.

I am sincerely torn between coming back to do their fancy/dancy scans vs just forgetting the whole MDA thing??? Do I sound cynical?

Our plan is to sleep on it and wait until tomorrow. The regular scheduling person was not here today, so we want to see what she says in the morning. If we can't get the scans this week, I will 1) blow it off completely OR 2) return and have them done at a later date at my convenience. I think I may need to be convinced more re the superiority of their equipment and physicians, etc.


If I have scans and tests done at home at the hospital where I work, they are nearly completely covered. Here, I will pay 20% and I am not sure that they will change a thing even if I have toe mets.

Decisions, decisions. Any input from my Pink Friends? I apologize for my general crankiness ;-)
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  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    I have no idea why salt
    I have no idea why salt water got *** out?
  • Clementine_P
    Clementine_P Member Posts: 518 Member
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    I think you should give them a chance
    You made the trip there and took a week off from work for this, so why not see where it goes? At the least, your idea of sleeping on it, is a good one. Don't be put off by the shiny fancy things. Lots of people donate money to these places for specific reasons. Many give money for courtyards, waiting rooms, and yes, blingy aquariums. Just doing what you are doing takes courage so try to keep an open mind and a positive attitude. Maybe they won't change a thing in your treatment, but then that gives you peace of mind that your doctor knows what he/she is doing and that you can feel complete confidence in him/her. The 20% may just be worth it for that.

    Hang in there Cynthia!
    Clementine
  • chenheart
    chenheart Member Posts: 5,159
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    I have no idea why salt
    I have no idea why salt water got *** out?

    I know why !!!!!
    I know why you got auto-censored! So, for the sensitive ears/eyes on the board, I apologize in advance...but the letters that got bleeped out spell T W A T....we are doomed, I tell you, we're doomed! hahahahahahahaha! We can have our breasts cut in to and off, we can face indignities of unspeakable magnitide, and yet we are not mature enough to know you were not being vulgar when describing an aquarium! Try typing the name of an animal with black rings around his eyes and tail and you will get the same ****!! my oh my!
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    chenheart said:

    I know why !!!!!
    I know why you got auto-censored! So, for the sensitive ears/eyes on the board, I apologize in advance...but the letters that got bleeped out spell T W A T....we are doomed, I tell you, we're doomed! hahahahahahahaha! We can have our breasts cut in to and off, we can face indignities of unspeakable magnitide, and yet we are not mature enough to know you were not being vulgar when describing an aquarium! Try typing the name of an animal with black rings around his eyes and tail and you will get the same ****!! my oh my!

    Oh Chen, you gave me the
    Oh Chen, you gave me the laugh out loud that I needed today!!! Thank you, thank you. Yes, we do put up with "unspeakable dignities", don't we? And then we are censored for salt water. I am going to wet my pants...ROFLOL!!!

    I vow to do better with my obscene language ;-)
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    I think you should give them a chance
    You made the trip there and took a week off from work for this, so why not see where it goes? At the least, your idea of sleeping on it, is a good one. Don't be put off by the shiny fancy things. Lots of people donate money to these places for specific reasons. Many give money for courtyards, waiting rooms, and yes, blingy aquariums. Just doing what you are doing takes courage so try to keep an open mind and a positive attitude. Maybe they won't change a thing in your treatment, but then that gives you peace of mind that your doctor knows what he/she is doing and that you can feel complete confidence in him/her. The 20% may just be worth it for that.

    Hang in there Cynthia!
    Clementine

    Do they have Nemo?
    CC, I think you have to go with your gut on this decision. And I would trust your gut even more than anyone else’s because you’re a medical professional –- you have more experience than many of us do with hospitals and doctors and tests. I think sleeping on it is a great idea –- after that, you need to do what feels right for you and your body.

    Now...if any of the bubbly aquarium thingys had NEMO swimming around in them....I mean, that’s how I pick MY doctors. (Okay, not really :-)

    Traci
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    I think you should give them a chance
    You made the trip there and took a week off from work for this, so why not see where it goes? At the least, your idea of sleeping on it, is a good one. Don't be put off by the shiny fancy things. Lots of people donate money to these places for specific reasons. Many give money for courtyards, waiting rooms, and yes, blingy aquariums. Just doing what you are doing takes courage so try to keep an open mind and a positive attitude. Maybe they won't change a thing in your treatment, but then that gives you peace of mind that your doctor knows what he/she is doing and that you can feel complete confidence in him/her. The 20% may just be worth it for that.

    Hang in there Cynthia!
    Clementine

    I know that you are right
    I know that you are right Clementine. I am taking deep breaths and telling myself to be patient (not my strong suit).

    My case will be presented before about 20 others so even if the one doc rubbed me the wrong way, I could get more and valuable input.

    Maybe she is that good (or that arrogant), but I wish she had looked at my scans before opening her mouth (and she had not because I handed them to her for the first time while we were talking).

    And she is not the one who has kept me alive for 24 years--the doc who switched me to the new meds is the same one who did some controversial things with me back in the 80's. So there Big MDA doc! ;-) LOL-I sound like a cranky two year old!
  • Clementine_P
    Clementine_P Member Posts: 518 Member
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    I know that you are right
    I know that you are right Clementine. I am taking deep breaths and telling myself to be patient (not my strong suit).

    My case will be presented before about 20 others so even if the one doc rubbed me the wrong way, I could get more and valuable input.

    Maybe she is that good (or that arrogant), but I wish she had looked at my scans before opening her mouth (and she had not because I handed them to her for the first time while we were talking).

    And she is not the one who has kept me alive for 24 years--the doc who switched me to the new meds is the same one who did some controversial things with me back in the 80's. So there Big MDA doc! ;-) LOL-I sound like a cranky two year old!

    She does sound like a piece of work!
    I can't argue with that, this one doctor sounds like a pill (no pun intended). To think that she didn't even feel the need to look at your scans is pretty ridiculous. Hopefully the other 19 will be better! I have my fingers crossed for you. Just keep taking those deep breaths...

    Also, I just wanted to add that I almost died laughing at Chen's post!!! Cynthia, I always knew you were a pervert! JUST KIDDING!

    Best, Clementine
  • tjohnson2310
    tjohnson2310 Member Posts: 168 Member
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    I am a patient at MDACC Houston
    I know the Mays Clinic well. I have been going there for a year. On my initial visit I was there for 13 days of testing. One test lead to another. So I get were you are coming from there. You can ask them to adjust your schedule. I have had test done as late as 7 pm. As for the MRI and PET they are expensive test so hospitals like to get a pre-certification which in some cases takes about 3 days.
    Now if you look at the design of the office as a barometer of a brilliant doctor..I should stick with the fancy MDACC. My doctors office looked like he had not changed a thing since the 1950's. He misdiagnosed my breast cancer as fibrocystic breast disease.
    ....I have enjoyed MDACC it is the place for me. I am more confident in them based on my experience here at home. So, you have to do what's right for you.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    She does sound like a piece of work!
    I can't argue with that, this one doctor sounds like a pill (no pun intended). To think that she didn't even feel the need to look at your scans is pretty ridiculous. Hopefully the other 19 will be better! I have my fingers crossed for you. Just keep taking those deep breaths...

    Also, I just wanted to add that I almost died laughing at Chen's post!!! Cynthia, I always knew you were a pervert! JUST KIDDING!

    Best, Clementine

    CC .. I am laughing and crying at the same time ...
    gathering my wits --- before I open my mouth, and insert, my foot.


    Girlfriend ... You've waited soooooo long for this appointment !!! Cut yourself a break ... call your insurance company and see if they can speed the approval process on remaining scans, tests and procedures.

    You are a well educated, and respected Physican Assistant --- don't allow any Doctor, Specialist, Radiologist or RN to brush you off, -- or give you a fluff and puff, " Welcome " speech without knowing every detail of your case history. We are individuals, not stats, and we certainly deserve to be treated as such!!! Put your heels on, and get ready to kick some asssssss.

    Now ... my breast cancer case was also brought up with a panel of experts at St. Joseph's Cancer Center -- where my file was discussed in length (notes taken, typed and a copy mailed to me). So many Doctors and Specialist had input and made a 'joint' recommendation ...

    My last comment ... CC -- you are FORCE to be reckoned with, please do not forget that. Look past the visual, razzle dazzle -- and see what this facility and hospital staff has to offer you.

    Your opinion, your choice.

    Vicki Sam
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    VickiSam said:

    CC .. I am laughing and crying at the same time ...
    gathering my wits --- before I open my mouth, and insert, my foot.


    Girlfriend ... You've waited soooooo long for this appointment !!! Cut yourself a break ... call your insurance company and see if they can speed the approval process on remaining scans, tests and procedures.

    You are a well educated, and respected Physican Assistant --- don't allow any Doctor, Specialist, Radiologist or RN to brush you off, -- or give you a fluff and puff, " Welcome " speech without knowing every detail of your case history. We are individuals, not stats, and we certainly deserve to be treated as such!!! Put your heels on, and get ready to kick some asssssss.

    Now ... my breast cancer case was also brought up with a panel of experts at St. Joseph's Cancer Center -- where my file was discussed in length (notes taken, typed and a copy mailed to me). So many Doctors and Specialist had input and made a 'joint' recommendation ...

    My last comment ... CC -- you are FORCE to be reckoned with, please do not forget that. Look past the visual, razzle dazzle -- and see what this facility and hospital staff has to offer you.

    Your opinion, your choice.

    Vicki Sam

    Vicki Sam, we really must be
    Vicki Sam, we really must be related as I just got off the phone with Patsy (Seattle sister) and she told me, "Push back!"

    She said to tell them to either get the tests done now or ask them nicely where they would like for me to have them done in the N.O. area. She also said to tell them that I paid to come all this way and would like my case presented no matter what.

    I am learning many things:

    1) Never schedule a first appointment the day after a holiday. You will get the second string for sure.

    2) Push back (I have to keep repeating that to myself).

    3) Pretty aquariums and bubbles do not always make for informative and helpful consultations.

    4) Never take coffee onto the shuttle because it is very bumpy and you will end up with coffee down your blouse at your first appointment ;-)
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    I am a patient at MDACC Houston
    I know the Mays Clinic well. I have been going there for a year. On my initial visit I was there for 13 days of testing. One test lead to another. So I get were you are coming from there. You can ask them to adjust your schedule. I have had test done as late as 7 pm. As for the MRI and PET they are expensive test so hospitals like to get a pre-certification which in some cases takes about 3 days.
    Now if you look at the design of the office as a barometer of a brilliant doctor..I should stick with the fancy MDACC. My doctors office looked like he had not changed a thing since the 1950's. He misdiagnosed my breast cancer as fibrocystic breast disease.
    ....I have enjoyed MDACC it is the place for me. I am more confident in them based on my experience here at home. So, you have to do what's right for you.

    Do you live in the Houston
    Do you live in the Houston area? I do not and was told to come for 5 full days of testing. I duly scheduled that time out of my very busy working life and booked a hotel room.

    I could have been pre-certified for these tests before I arrived. There is absolutely no reason for me to pay for a hotel room and sit in Houston while they get their s**t together.

    I am having a treatment back in Slidell, LA on Monday and I work on Tuesday. There is really no excuse for them not having had this organized when you come from another region.

    I am glad it is the place for you, but not at all convinced it is the right place for me. My home physician is Harvard trained and has kept me going with (initially) Stage 3, now Stage 4 for 24 years. There is a lot of trust after that much time.

    I will see what they say tomorrow. But I am pushing back.
  • missrenee
    missrenee Member Posts: 2,136 Member
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    Do you live in the Houston
    Do you live in the Houston area? I do not and was told to come for 5 full days of testing. I duly scheduled that time out of my very busy working life and booked a hotel room.

    I could have been pre-certified for these tests before I arrived. There is absolutely no reason for me to pay for a hotel room and sit in Houston while they get their s**t together.

    I am having a treatment back in Slidell, LA on Monday and I work on Tuesday. There is really no excuse for them not having had this organized when you come from another region.

    I am glad it is the place for you, but not at all convinced it is the right place for me. My home physician is Harvard trained and has kept me going with (initially) Stage 3, now Stage 4 for 24 years. There is a lot of trust after that much time.

    I will see what they say tomorrow. But I am pushing back.

    I so understand your frustration, CC
    You've come a long way and this certainly should have been better organized. Good for you for pushing back, sleeping on it and then doing what is right for you. With all the crap you are dealing with--they certainly should have their s**t together. You just kind of expect more for such a well-known facility, but there you go.

    Keeping you in my prayers tonight so that your mind is at ease.

    Hugs, Renee
  • lynn1950
    lynn1950 Member Posts: 2,570
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    Do you live in the Houston
    Do you live in the Houston area? I do not and was told to come for 5 full days of testing. I duly scheduled that time out of my very busy working life and booked a hotel room.

    I could have been pre-certified for these tests before I arrived. There is absolutely no reason for me to pay for a hotel room and sit in Houston while they get their s**t together.

    I am having a treatment back in Slidell, LA on Monday and I work on Tuesday. There is really no excuse for them not having had this organized when you come from another region.

    I am glad it is the place for you, but not at all convinced it is the right place for me. My home physician is Harvard trained and has kept me going with (initially) Stage 3, now Stage 4 for 24 years. There is a lot of trust after that much time.

    I will see what they say tomorrow. But I am pushing back.

    CC: I actually had a tantrum
    CC: I actually had a tantrum when the cancer center I was to go to switched oncologists on me right before my first appointment with them. I exploded and really pushed it. I insisted that enough had gone wrong in my care, that I had not had time to research this new doc, and that I wanted to be switched back to the doc I had chosen forthwith. This resulted in a phone call from my surgeon, who intervened on my behalf, and then a very calming phone call from the onc I had selected originally. Sometimes being forceful gets you the results you need. And I didn't swear at them, either, I didn't even say saltwater!

    Best wishes that your visit turns out helpful and that you can find some enjoyment in being in a new big city. xoxoxoxo Lynn
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    lynn1950 said:

    CC: I actually had a tantrum
    CC: I actually had a tantrum when the cancer center I was to go to switched oncologists on me right before my first appointment with them. I exploded and really pushed it. I insisted that enough had gone wrong in my care, that I had not had time to research this new doc, and that I wanted to be switched back to the doc I had chosen forthwith. This resulted in a phone call from my surgeon, who intervened on my behalf, and then a very calming phone call from the onc I had selected originally. Sometimes being forceful gets you the results you need. And I didn't swear at them, either, I didn't even say saltwater!

    Best wishes that your visit turns out helpful and that you can find some enjoyment in being in a new big city. xoxoxoxo Lynn

    I may just have that tantrum
    I may just have that tantrum tomorrow and swear saltwater right at them...lol.

    I am really not trying to dis the place--I'm just very frustrated and disappointed right now.

    This appointment was scheduled months ago and I dutifully faxed them 24 years worth of reading material. I wasn't a surprise or emergent case. And the physician and I didn't really seem like a great match: she is young, cocky and opinionated and I am not sure what I like, but she wasn't exactly it. Life goes on....
  • cahjah75
    cahjah75 Member Posts: 2,631
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    CC
    I hope the insurance comes through quickly so you can get the scans they want you to have. You're there now. I'll keep you in my happy thoughts :D
    Char
  • tjohnson2310
    tjohnson2310 Member Posts: 168 Member
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    Do you live in the Houston
    Do you live in the Houston area? I do not and was told to come for 5 full days of testing. I duly scheduled that time out of my very busy working life and booked a hotel room.

    I could have been pre-certified for these tests before I arrived. There is absolutely no reason for me to pay for a hotel room and sit in Houston while they get their s**t together.

    I am having a treatment back in Slidell, LA on Monday and I work on Tuesday. There is really no excuse for them not having had this organized when you come from another region.

    I am glad it is the place for you, but not at all convinced it is the right place for me. My home physician is Harvard trained and has kept me going with (initially) Stage 3, now Stage 4 for 24 years. There is a lot of trust after that much time.

    I will see what they say tomorrow. But I am pushing back.

    Lake Charles,LA
    I live in Lake Charles,La so its a 2 1/2 hour drive for me. I was told five to seven days as well but as I mentioned I was there for 13. I think the initial visit in regards to testing is unpredictable. For the first five days, I had every exam in the book. Then at the end of the week a visit with the MD to review results. The results lead him to order more test....anyway it got better once I had a plan of care.

    I did a self referral...so when I called them they collected all of my insurance information before my visit. Calling your insurance company your self could probably push things along.

    As far as hotels, make sure you let the hotel know you are a patient at MDACC you can get a medical rate. Also if the hotel has a rewards program join it..you can accumulate points for free nights.

    I wish you the best in finding the right place for you.
  • dbhadra
    dbhadra Member Posts: 344 Member
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    cahjah75 said:

    CC
    I hope the insurance comes through quickly so you can get the scans they want you to have. You're there now. I'll keep you in my happy thoughts :D
    Char

    in terms of the testing
    I wonder if it's really necessary to have it done there? I am treated at Fox Chase Cancer Center in Philadelphia which is about 3 hours from where I live in Northern Virginia. It's kind of a "sister" center to MD Anderson with regards to IBC and my onc there is originally from MD Anderson.

    The first time I went there, they also wanted me to have a lot of additional tests and I would have had to stay longer than I had planned. That wasn't possible for me as I have young kids and had not arranged for care for more than an overnight as I was scheduled for only one appointment initially. I had them write down all the tests they needed and then had them done locally and the results sent to them.

    Pre-certification had also caused delays in some cases but usually by kicking and screaming and basically refusing to leave the office or even the counter of the person who was dealing with it I was usually able to get them to call the insurance and get it done! Hey, you do what you need to...and sometimes you just need to be VERY FIRM (don;t like to use the word rude...)

    About the "bling" - Fox Chase also has a fair amount of sculpture,mostly cool sculptures done by cancer survivors on cancer related themes. But they don;t have such a fancy water fountain as shown in your picture! I think it's because they are research hospitals and need to put on that kind of face to impress whoever.

    Sleep on it and then follow your gut!

    Laura
  • Annette 11
    Annette 11 Member Posts: 380
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    CC
    Ok, here is my 2cents. If you can get the scans this week that would be ideal. If the equipment at your hospital is as superior as Mays cancer center and Mays is not going to give you the appointment this week then my vote is to do it at your hospital. As your pink sisters have said, You know best. You have the best back ground to deceide. I don't like these decisions either. Hoping for the best.
    Hugs,
    Annette
  • New Flower
    New Flower Member Posts: 4,294
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    CC
    Ok, here is my 2cents. If you can get the scans this week that would be ideal. If the equipment at your hospital is as superior as Mays cancer center and Mays is not going to give you the appointment this week then my vote is to do it at your hospital. As your pink sisters have said, You know best. You have the best back ground to deceide. I don't like these decisions either. Hoping for the best.
    Hugs,
    Annette

    I have been trying to post for hours the site was not working
    Eileen,
    Eileen,
    I have read only your first post, your impressions and nothing more.
    Here my first first impression on your story. What I would do if it would be me now, not me three & half years ago when I was diagnosed , had no clue, no experience with doctors and follow famous docs and institutions only.
    Me today would :
    1. Request a written report from MD Anderson doctor who gave you a consultation
    2. Call my insurance and ask why in was denied today and when additional PET scan will be approved ( next week, three months, six months).
    3. Depending on insurance answer make my decision.

    You can always come back to Texas , however it is additional money and time. It seems to me that you and your home team are more caring and involved that MDA.
    As far as I understand anti - estrogen therapy if regimen has been working it patient should continue with it. In case of side effects or regimen becomes ineffective a change should be made. In your new regimen both drugs are relatively new, that is why she might feel conservative about it.
    It also seems that the more times we change anti estrogen drugs, less likely cancer cells can tolerate and become resistant or mutate.

    Wishing you an easy time with your decision
    New Flower
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    I keep coming back here
    I keep coming back here because ya'll (do you hear my Texas twang? haha) are so good at making me smile and laugh. In spite of the frustration and disappointment.

    CC, it sounds like you've changed your pretty dress for some jeans and sal***ter cowboy boots, and that you're ready to use them.

    I'll be thinking of you.

    Hugs,

    Linda