Heading to Duke

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jennyboog
jennyboog Member Posts: 1,322
edited June 2014 in Stage III Breast Cancer

I will be going to Duke next week to be checked out by them and have them to review everything.  My onc is referring me, she says because I'm BRCA+ and high-risk they have clinical trials and research going all the time and I can get involved with them.  At first I was super excited about getting a research university look at me but now I am getting a little nervous.  I know I recieved the standard of care but what if they don't like what they see.  I just wish I would have gone earlier and not this far out of tx.  I already have a list of questions for them :)  It's not MD Anderson but in my neck of the woods it's the next best thing.  Hopefully all will go well.

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  • Karina121293
    Karina121293 Member Posts: 370
    edited February 2012

    Wish you all the best of luck!!!!! You are a brave girl. I am scared to even go and see my main onco now...Undecided We are right next to you. Let us know how it goes.

    Hugs. 

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  • bethcw
    bethcw Member Posts: 98
    edited February 2012

    Good luck!  I'm right next door having gotten all of my treatments done at UNC.  I had all of my records transferred to UNC when my regional center started talking biopsy last year, and I think it was the best decision I ever made. 

     I'm sure they will take good care of you at Duke.  Don't worry about what's been done in the past, just stay focused on what they can do for you in the future!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2012

    Thanks everyone, I will let ya'll know how it goes.  I've heard great things about UNC Beth.  I tried to go there in the beginning but they don't accept my insurance (Tricare, we're military).  My onc. just brought it up out of the blue, I didn't say anything about going anywhere, who knows why after all this time but oh well, here I go :)

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  • JacquelineG
    JacquelineG Member Posts: 282
    edited February 2012

    Hi Jenny,

    I hope all goes well for you! I'm BRCA+ and Stage IIIc as well --- and not too far from Duke either since I live in Atlanta (went to Duke undergrad too!). Let us know what you find out! i know what you mean about being excited but then nervous... it happens to me as I near any onc appointment. But I bet you'll get good news all around and have some peace of mind... and maybe you'll get to be in a cutting edge trial!

    Best of luck to you!

    jackie

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  • anna4969
    anna4969 Member Posts: 86
    edited February 2012

    Jennyboog,

    I think that is great you are getting another opinion of your case.  I know, the whole thing is ugly this cancer crap, but you will find piece of mind, I am sure after another set of minds looks at the whole picture.  I have been in your shoes, it's a nervous thing and you wonder do you dig it all up again, pretty painful but in the grand scheme of things another set of minds looking at your case is a fantastic opportunity.  Or if anything, they may simply agree that you got the proper care and then you know you did all you could to get healthy.  This is a good, good thing for you. 

    Take Care :)

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2012

    It's all good Jenn, keep us posted on how things go!

    Sharon

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  • SharonMH
    SharonMH Member Posts: 353
    edited February 2012

    Hi,  Glad that you are getting another opinion. Let us know what they say.  SharonH

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited February 2012

    Jenny, sending positive thoughts as you head to Duke. Besides research access, they offer integrative health tx. There is also a strong counselling program available free and as needed to all cancer patients. Counselling was easy to access and helpful to me...and is still there if
    I need it.



    I was diagnosed at Duke in 2009 and opted to have surgery and all treatments there for three reasons. 1st, I wanted access to oncologists who are very focused and current on research. 2nd, I wanted a surgeon and oncs who treat a LOT of cases and practice in a collaborative way. 3rd, the level of professionalism at Duke far exceeded local medical care I had experienced. I have advocated for and received some nuanced changes in tx at Duke that I feel have benefited my prognosis. My biggest surprise was that I got both cutting edge tx. and unhurried, compassionate care. I wish the same for you!
    PS I follow all bc research and will travel if and when I qualify for vaccine or other trials significantly preventative for recurrence....sure wish Duke were the place :).

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2012

    Thanks Ograce, that gives me reassurance.  I appreciate all the info from a fellow "carolina girl".  I'm excited to pick their brains :)  My onc did her residences at Duke but I just don't have a personal bond with her since she wasn't my active tx dr.  I'm hoping to get cutting edge info I am desperately searching for.

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    One of my survivor friends went to Duke.that was 8yrs ago. Her local MO was able to do what Duke recommended. She's doing great. Had lobular.stage 3

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    jennyboog, I saw this topic in the "Active Topics" and was nosey enough to read...LOL

    I've been going to Duke since my dx.  Actually, I've been going to Duke BEFORE my dx...my gyn is there.  Anyway, I don't think you'll be disappointed. 

    Did you know that they are building the most beautiful cancer center.  I go for a couple of shots in a couple of weeks and then when I go back in March my clinic will be moved in.  I'm very excited about this.

    When are you going and do you know who you will be seeing?

    Good luck!

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  • Pure
    Pure Member Posts: 1,796
    edited February 2012

    I went to Duke as you know and I feel like I got the best care possible. With that said I did have to fight for zometa and had to educate my doctor about the drug. Who are you seeing?

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2012

    No, I didn't know they were building a new center, that is exciting.  That is a long drive from Wilmington.  I will be going on the 22nd and seeing Peppercorn and a rad. onc. (don't have a name). I'm getting excited to hear what they have to say, I've been getting them my records off and on all week.  Thanks for the info. 

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited February 2012

    Jenny, be sure to take a list of ALL your questions. My docs expected questions and there was a lot of time for discussion in my first appt. with each dr. Unfortunately, I had just been diagnosed, was in shock and didn't really know what to ask. With your "experience :( " and research, this could be a grand opportunity to ask those questions that linger in the back of the mind or haven't been adequately answered.



    Hope your wkend. is good. I will send good thoughts your way next week!

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  • Naniam
    Naniam Member Posts: 1,766
    edited February 2012

    Jenny, another Carolina gal, Stage IV,  offering encouragement.  I'm in the foothills and I go to Baptist in Winston-Salem.  UNC and Duke were just a long drive for me with Winston so close. 

    I have had personal experience with Duke on another level with my son years ago -I think you will be well take care of there and wishing you all the best. 

    Hugs,  Brenda

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  • christine47
    christine47 Member Posts: 1,454
    edited February 2012

    Hi NC girls, I am also a Baptist patient, but hear fabulous things about all the Duke BC staff.

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  • Pure
    Pure Member Posts: 1,796
    edited February 2012

    Good Luck Jenny... If I can answer any questions or help at all let me know...I am only 15 minutes away so if I can help in anyway please don't hesitate to ask....

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2012

    Thanks carolina girls!  I appreciate all the encouragment and info, I will let you know and I already have a list going.  I hope they take their time and answer everything.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    jenny, it sounds like you will be in very good hands.  I see Dr. Kimmick.  I believe Peppercorn is supposed to be top-notch!

    I will be going the 27th for my Faslodex and Xgeva injections.  The ride to Duke isn't that bad, but the gasoline prices are horrible! 

    I'm anxious to find out what you think.  Oh, and you'll see that new building when you go.  I'm sure we have the same clinic.  There has been LOTS of construction going on.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Naniam, I've heard some good things about the Baptist in Winston-Salem.  I think the drive from Charlotte is a little over two hours....perhaps 2 1/2.  The only time we've driven from Charlotte to Durham for my appointment was after Christmas at my DD's house.  The weather was so bad.  It rained so hard so my DH didn't drive fast at all.  However, he's a bad boy when the weather is good.  I'm waiting for him to get a ticket.

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  • Naniam
    Naniam Member Posts: 1,766
    edited February 2012

    Sadly, it is necessary for Baptist to add on to their Comprehensive Cancer Center.  Looks as if it is going to be 3-4 more stories.  I haven't stopped and actually counted.  Baptist does lots of research too - know my first time around I enrolled in a study that included Baptist, Duke and a hospital in Penn.

    Shirley, gas is high and each week goes up more.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Naniam, yes and it's concerning me quite a bit since I have to go monthly.  Our car does not get good gas mileage...about 10 mpg. 

    Why do you sound upset that Baptist is adding on?  Is it because it's just getting too big?  I can tell you that since I've been going to Duke, which has been many years, the place has grown enormously.  There are off site places to see some doctors.  A friend of mine sees a cardiologist at one of those sites and loves it.  The parking is so much easier...LOL  She has really, really bad RA. 

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  • Naniam
    Naniam Member Posts: 1,766
    edited February 2012

    Shirley,  I didn't mean to imply that I was upset they were adding on other than the fact that it is "necessary" that they do so.  It saddens me that there are so many people dealing with cancer that they are forced to expand. 

    My husband had his surgery here for his colon cancer 3 years ago this summer - they were just great both in the cancer center and the hospital.  Baptist is huge but everyone is very helpful if you get lost in some of the walkways that connect to the hospital. 

    I just wish cancer centers didn't have to add on because of the number of patients.

    Jennyboog - wishing you a great visit, they answer your questions and you know all your options.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2012

    Sorry, I've not posted before now.  It been a crazy couple of days and I didn't go to Duke.  The day before my appt. I was called by them and asked where my referal was.  Long story short, I had to cancel, each dr kept pointing the finger at each other and come to find out the Duke dr's were out of my network.  I am so upset & let-down and I'm actually thinking of switching onc. now....dr's don't realize all that goes into going to an appt. like that.  My DH took off work and I had to line up babysitters and people to pick up my daughter from school, etc.  They really dropped the ball on this, along with some personal things going on I've had it.  Thanks again everyone.

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited February 2012

    Oh Jenny, I am so sorry.  Is there somewhere else you can go?  I know its an extreme hassel to travel for all this, but it would probably be worth it in the end.  I definately hate how all these docs work.  :(  Mostly, once I got my contact with MDAnderson, my nurse navagator from home got all the correct paper work faxed.  Do you have one thats affiliated with your hospital.  A social worker or someone who can do that for you?  Regardless, I am sending BIG hugs your way. What a let down :(

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    there's a flight service I used when I was first dx.

    www.corpangelnetwork.org

    they will put you on a corporate flight that just happens to be going your way. We used them a lot to fly from places near us up into near NYC.

    Its free. and you are on nice corporate jets. and if you book ahead you can usually get big discounts through whichever hosp has discounts on nearby hotels

    I was looking forward to hearing what they said too. But hell I went to three different MO and they all said same thing. my family dragged me all over. Bless there hearts

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2012

    Shit Jenny,

    I'm sorry that fell through at the last moment.  Although the larger Centers have great resources they are still a big "machine" when it comes down to the details.  I had NUMEROUS issues with Johns Hopkins leading up to my surgery, mostly their fault, some the local hospital sending the wrong biopsy, etc. What a mess.  

    Keep on keepin on girl!

    Love,
    Sharon

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  • SharonMH
    SharonMH Member Posts: 353
    edited February 2012

    Hi  Jenny, So sorry that your visit to Duke fell through at the last minute. SharonH

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2012

    Thanks everyone for the kind words and info.  It's just so frustrating how all this works, it was already a pain in my a$$, I was faxing and Fed Ex-ing stuff to Duke and to have this to happen 12 hours before just really did a number on me....along with some other stuff.  I took off and went out of town for a couple of days to clear my head.  BC just keeps biting me in the a$$.

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  • JacquelineG
    JacquelineG Member Posts: 282
    edited February 2012

    so sorry to hear that Jenny - hang in there!

    jackie

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