Misdiagnosed

Alannis
Alannis Member Posts: 5
edited December 2014 in IBC (Inflammatory Breast Cancer)

Has anyone been misdiagnosed for three or more months?

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited November 2014


    Alannis,

    Did the docs miss the dx or were you dx with something other that IBC and later found out it was IBC.  Others will respond, but from reading here, missing the IBC diagnosis happens more often than it should. And let's just say it should never happen!

    If you have now been dx with IBC,make sure you are being treated at a center that knows what it is .   There are fairly standard protocols and you want to be sure you are getting state of the art treatment and care. 

    And no matter what you may have read - there are many on here living full lives after being dx with IBC. 

    Be well

    Nel

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2014

    As I asked in another of your threads - do you now have a DX of IBC?

    M

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  • Alannis
    Alannis Member Posts: 5
    edited November 2014

    Not yet. Going to go to a specialty clinic as not getting anywhere and have to wait for appointments each week and too much time is passing and I keep getting dismissed or handed to another doctor.

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  • Jmo06
    Jmo06 Member Posts: 159
    edited December 2014

    it was about 2 months , surgeon finally diagnosed. Mom had to fight to go see surgeon.

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  • alicki
    alicki Member Posts: 661
    edited December 2014

    Even now, 17 months later, still wondering if they ve missed something and it hasn't spread to my brain (white spots many)

    Nothing in reduction materials

    People will say I'm ridden with health anxiety, still wondering....next brain scan in 3.5 months

    Kicks : don't kick me please!

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  • Ariom
    Ariom Member Posts: 6,197
    edited December 2014

    alicki, I remember when you first came here, thinking you had been misdiagnosed for IBC. Is this really still going on for you? You say you opted for a reduction, to try to find something, that may have been missed, but you've had the all clear from that pathology which is definitely good news and you know if you had actually had IBC which had been missed, it would have been discovered, long before now.

    I am sorry you are still feeling this terrible anxiety, but you've got to see that you've had a much better outcome than anyone here, who has had a positive BC result, on this BC website. Is it not time for celebration that you are in the huge percentage of benign results recipients?

    If it were me, I would be careful with the added scans, which are not showing anything.

    You are in the enviable position of having felt the fear, done the testing and have come out the other side, knowing that you don't have breast cancer. Time for a new beginning for you!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited December 2014

    Ariom, your message is very kind, but sadly I doubt it's going to help. I get upset at the medical community who continues to feed alicki's fear by scheduling these tests, which IMO only validates her worry but does nothing to address her issues.

    Alicki it's none of my business, but I do hope you are receiving treatment for your anxiety which clearly is all-consuming. As Ariom said, you should be celebrating the fact you do not have BC, but instead, move from diagnostic to diagnostic. I wish someone could get you to understand how many women would love to be in your shoes.

    Amy

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  • wrenn
    wrenn Member Posts: 2,707
    edited December 2014

    I think the medical community will take money from any source sometimes. I can't imagine how disturbing it must be for women with IBC to have someone come along who is determined to be diagnosed with this truly frightening disease. I hope this community will be firmer in directing Alicki to the appropriate resources for her anxiety.

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2014

    It is very "disturbing"' as one with IBC to see someone who is so totally obsessed with WANTING to be IBC. Hopefully someday she will get the type of medical care that will deal with the real issues.

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  • Jujube43
    Jujube43 Member Posts: 178
    edited December 2014

    As someone who has IBC I am in heartfelt agreement! I would give almost anything to be told I do not have it...

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  • Ariom
    Ariom Member Posts: 6,197
    edited December 2014

    Thank you Amy! I too, wonder at the compliance of the medical profession continuing to schedule these tests, when they in themselves carry possible negative affects. There are so many women here, on these boards who are in dire need of further testing, that their insurance companies are refusing to authorize. I simply don't get it! As wrenn says, I guess there is the financial aspect, in this disturbing situation too.

    I can totally understand where Kicks and Juane and anyone else, who has had to hear they are Dx with IBC, are coming from.


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  • cider8
    cider8 Member Posts: 832
    edited December 2014

    alicki, I find it really insulting that you continue to seek support from those of us that did receive a diagnosis of IBC. It insults me that even after this community gave you guidance and support on how to seek proper screening, which all resulted in negative for IBC or any cancer, you are still seeking support for not having cancer. This community has lost friends to IBC, have gone through arduous treatments, and suffer long lasting side effects. i feel for your great anxiety, as I have experienced dibilitating anxiety years before a cancer diagnosis. Personally, I think the lack of coping skills that brought on my anxiety contributed to my body developing cancer. I sought help for my issues which has allowed me to cope with the devistation of repeated cancer dignoses. Perhaps you could explore another path to finding peace and find support from a community for benign breast conditions or undiagnosed/misdiagnosed conditions. I do wish you continued good health

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2014

    I won't use the words that the 'behavior' deserves (in my opinion). I'm a 'tough old board' (misspelling intended). What scares me the most is the damage done to ones who are 'fragil' when they come here - not just the IBCers. I d

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  • arg48
    arg48 Member Posts: 1
    edited December 2014

    I recently went for a mammo and ultrasound, they both showed thickening of the skin and I have the peau d'orange in the same area. The ultrasound dr said it could be post surgical changes from a reduction. The nurse practitioner is ordering a punch biopsy but not until Jan or Feb. Should I be concerned?

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Dear arg48, firstly, welcome to the BCO Forum.

    Please try to take one thing at a time, wait for the biopsy results and try to remember that the mammo and US must not have shown any obvious nasties or the biopsy would be ASAP. They are possibly hoping that the symptoms that, as they suggested may be just a reaction to your reduction surgery, may go away soon.

    However, should your symptoms change or worsen, then we would suggest you try to get to see a Doctor or your surgeon. So keep an eye on conditions.

    We hope that it is just a reaction, and that you are fine, so enjoy the festive season.

    The Mods

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