Suggestions on 2nd opinion

VTmomofsurvivor
VTmomofsurvivor Member Posts: 8
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi,

My 34 year old dtr is in a clinical trial in Boston for ibc, stage iv(bone mets), taking ibraxane/avastatin. Started 3rd round today. After 1st round, tumors reduced 50%, after 2nd round, no change. Dr. came in and said, we can stop tx, surgery won't help survival rate. My daughter has been adament that she not know that type of information. I am a nurse practitioner and have not been happy with the sloppy scheduling/attitude of nursing staff/dr. being too busy to give inform, etc, but have been keeping my opinions to myself, because she needs to have faith in her Dr. After today, she said, I don't think my dr cares if I survive until my 5 yr old is 18...she has a totally different attitude after this last cat scan.

 I am wondering if anybody has had any better care or suggestions for a oncologist in NY or other NE hospital, or even a consult in Baltimore or PA?   I am feeling pretty helpless because there aren't any options in VT.  Do oncologists even give 2nd opinions? When my dtr asked her oncologist if she could have her cat scans in NH to save the trip to Boston on her off tx week, her oncologist, said sure, I will refer you to their oncologist and transfer all your care there.  This isn't what she wanted.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Hi! I am in fact not yet diagnosed as IBC - just under suspicion if it, will have confirming consultation next Tuesday. In looking for an IBC specialist, I was given the name of Dr. Massimo Cristofanilli (sp?), of Fox-Chase in philladelphia.



    Good luck to you and your daughter!

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  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited September 2011

    I see Dr. Cristafanelli at Fox Chase in Philadephia as well. I would suggest that you get a second opinion. Her onc does not sound very encouraging or supportive. Dr. C specializes in IBC patients and is fully up with the latest treatment for IBC patients at all stages.

    Best,

    Laura Jean 

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  • VTmomofsurvivor
    VTmomofsurvivor Member Posts: 8
    edited September 2011

    Thank you, isn't he the oncologist at M anderson as well? If so, that is definately encouraging news and has given me hope for the first time since  May. Thank you both for you   quick response.

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  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited September 2011

    Dr c used to be at md Anderson but has now moved to fox chase. I drive from Washington dc to Philly to see him. We will also be there next Tuesday!



    Vest,

    Laura

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  • Lena
    Lena Member Posts: 1,036
    edited September 2011

    VTMom,

    I'm a patient at Dartmouth-Hitchcock Medical Center's Norris Cotton Cancer Center which is in Lebanon, NH, and my cancer doctors are all great. I would recommend them all, without exception, in a heartbeat. If your daughter doesn't like her doctors in Boston (and from your description, I wouldn't blame her if she didn't), perhaps Dartmouth would be something for her to look into. Dunno where you are in VT but I think it's "right up (or down)" I-91 for you.

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  • Claudia413
    Claudia413 Member Posts: 114
    edited September 2011

    I know several women that go to Dr. Beth Overmoyer at Dana Farber in Boston. I've heard nothing but good stuff about her. The same goes for Dr. Cristofanilli at Fox Chase in Philly. However, if you can get good doctors like the ones Lena mentioned in VT, go for it!  Closer to home is good if they know about IBC.  Good luck and let us know how it goes.

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  • HerSister
    HerSister Member Posts: 51
    edited September 2011

    How do I say this without sounding callous?  Well, here goes nothing - I envy anyone that is able to go to PA to meet with Dr. Cristofanilli (Dr. C).  I ALWAYS feel bad thinking this way as I realize that most women who meet with him have this horrible disease.  I DO wish they DID NOT have it.  It's just that going to PA for my sister (who has IBC) is, unfortunately, not an option.  I say that to imply that if your daughter is able to see him -  she should go!!

    I understand the closer to home factor too.  I've heard of women (that live far) that go to Dr. C for his opinion (on treatment, etc.), then, they find a good local doc (onc.) that will carry out the treatment that Dr. C. recommends.  I don't know for certain, but I would imagine they eventually go back to Dr. C. for occasional follow-ups.  I've also heard of women that will actually stay in PA (that live afar) the entire time they are receiving treatment just to be under his care.  He is that good!!

    I've also read that bone mets are relatively easy to treat (don't know if that is true).  And maybe someone else can help me out here, but, if your daughter is not (or has stopped) responding to that particular chemo cocktail, wouldn't an onc. typically change the drugs?? I don't wish this on anyone, but it sure sounds like that doc would be a better doc if they learned what it was like to be a patient.

    {{Hugs}}

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