Info on MD Anderson

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lorieg
lorieg Member Posts: 802
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am 32 years old with two very young children and was diagnosed with IBC 4 days ago.  My scans are all pending, and I meet with an oncologist today.  I am so so scared for myself but even more for my husband and children.  I was nursing my now 7 month old and was treated for "mastitis" and a "milk-filled cyst" for several months.  I kept being told to stop nursing and continue antibiotics and everything would resolve.  I had an u/s over a month ago that showed no suspicous signs for malignancy.  I finally referred myself to a breast surgeon b/c I did not believe I just had mastitis.  I had a biopsy immediately and got the call late Friday afternoon.  The last 4 days have been an utter nightmare.

My question...can anyone provide some info on MD Anderson??  Would I be able to go down for a consult and have them help organize care with my oncologist here in Ohio?  My husband/family is so supportive and are all for going down there, but I ultimately don't want to be away from all my support at home for months. 

TIA for any info!

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  • Sue-61
    Sue-61 Member Posts: 599
    edited August 2009

    First, I am sorry you are meeting us all here, and at such a young age.

    I used to be RN casemanager for a health insurance company and retired last year. (and then got breast cancer, sheesh), Anyway, this is not about me, it is about YOU. You need to see what kind o benefits you have in your insurance plan. It is stricktly an Ohio hmo? Do you have out of area benefits or is your plan and national one?  My best advice is to call your insuror and see if they offer casemanagers. Casemanagers are registered nurses and the service of same has no cost to the insured. From what I remember, MD Anderson is tops. But you also have to take into consideration travel and lodging expenses. Being from New England, I have no idea what is available in your area. Is there a large medical center or NCI (national cancer insitute) treatment center. Best wishes. Sue

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  • lbrewer
    lbrewer Member Posts: 766
    edited August 2009

    MD Anderson is the top cancer center in the world and has been every year for the past 5 years.  They are used to having people travel from all over the world to get the best care possible.  I would think they are very used to coordinating care with doctors once you return home.

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited August 2009

    Lorieg,

    MD Anderson will help cordinate with your local Onc.  The first time you go, they will request that you stay 10 to 14 days.  they will want you to send all records and slides of BX and hand carry any films of Mamms, US or other scans.  They will redo all test, and set up a team of Onc, Radiation Onc and surgeon to meet with you and discuss your treatment plan and options. 

    Many people have treatment at home, and return to MDA every three months for staging and plan revision.  They will give you a patient rep.  as soon as your insurance approves.  A social worker will be assigned that can help with housing and travel. 

    Best wishes and prayers for you.

    Herbie and Cam

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  • lorieg
    lorieg Member Posts: 802
    edited August 2009

    Thanks all!  I meet with my onc for the first time today and plan to discuss all this with him.  My DH already did an online referral to MDA.  They called within two hours, wow!  My only concern is that I have gone undiagnosed/misdiagnosed for so long I am scared to wait 2 more weeks for treatment.  Thanks again, and good luck to everyone!

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  • dreaming
    dreaming Member Posts: 473
    edited August 2009

    I can tell you about M.D.Anderson cancer Center, you can access information by phone or their web site, MDACC works very close if possible with the local doctors in the USA or abroad, an apoitment  and a plan of treatment is prepared.

    The staff is very friendly and  the patient comes first, they can work  with you if you can go for a short time probably they will do the exams asp, but the results can take longer, once they have a diagnosis they will contact you with a protocol ,your local doctor also can communicate with them,make sure to take his information.

    MDACC has its own hotel and there is also several in the medical center.

    Probably they will ask for your films and records. Call and the best for you.

    I work at MDACC .

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  • dancingneedles
    dancingneedles Member Posts: 18
    edited August 2009

    Sent you a private message...

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited September 2009

    This thread was a diamond find for me.  I live in central Tx and just got my diagnosis today.  I don't have any details until tomorrow morning's appt. with GP but the biopsy results were BC.

    First thought in my head was MD Anderson.  Second thought was how to live here and get treatment there.  At least for me it's only a 3 hour drive.  I'm glad to read that they coordinate with your local physicians.  That makes it an easy decision to head there with all my info and get the second opinion and guidance.

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  • PJB
    PJB Member Posts: 2,615
    edited September 2009

    I contacted MDA after I'd been through a couple of chemo regimens at Scott and White in Temple, which kept everything stable, but I was looking for a second opinion. 

    I was down there within a couple of weeks of calling to inquire about appts, had every scan/test you can think of. Was there Mon-Fri and went back the following Tuesday to talk to the doctor, who switched me off chemo and back onto an aromatase inhibitor.

    I get my Zometa with my regular onc's office and they also do my blood tests, which they fax down to MDA. 

    I found the whole thing pretty grueling (just being away from home that long), but everyone was nice and the Rotary House hotel that is part of MDA made things really easy.  I go back in October for rescans to see (crossing fingers and toes) that the new treatment is working.

    If you look on the Stage 4 forum and search for MD Anderson, a lot of the women on the boards had some very helpful stuff to say about their own experiences down there. 

    Liane, whereabouts in Central Texas are you? I'm in Waco.

    Paula 

      

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  • dreaming
    dreaming Member Posts: 473
    edited September 2009

    To read the good experiences at MDACC, makes my day, I started there as a volunteer, when I was diagnosed, I had never met anybody that had cancer, later I stayed as an employee it is a very special place and the patients are the nicest people to work with.

    It is special because we care about the patients and we try to cater to their needs, we all work as a team.

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited September 2009

    PJB, I just got back to this thread.  I live in Georgetown.  We'll be taking our motorhome down for the stay.  I have an appt. on Tuesday the 15th.  I guess I'll be there over the weekend so I made reservations at an RV park that has shuttle buses to the medical campus.  I've gathered all my documents and films.  I use Scott & White here and I do like the clinic and the Drs.  Don't like that I always have to run up to Temple for a number of things, in fact I refused to get the follow up mammo because they wanted me to spend the whole day in Temple..............aren't I a b.  My Dr. called and really pushed me to get the follow up and finally said if I can get you an appt. in Round Rock will you go.  That did it.  I even bet her $5 that it would be another wild goose chase since they always test and retest and tell me no problem.  Guess I owe her $5.  sigh.

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