Procardia & IBC

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    I don't have any intentions of waiting till March that is for sure.They will get tired of me but too bad this is my body

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I could never remember if the skin in a certain spot was something new or if it had been there the day before.  Its kind of like using an ink pen to draw a ring around a red rash to see if its spreading.  Please find a new doctor.  If your primary thinks its IBC too then he/she should be able to work with you to find someone else.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    Mine is on the outside of the breast, tonite very tender and purple.I noticed that also the right breast is alot more firmer than it was yesterday,as  the other is soft.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I don't understand why they won't just do a skin biopsy then.  Easy peasy and quick.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    Well this was the 1st time I saw this Dr and I think she is just baffled but she did say if anyhthng changes do not and I repeat do not hesitate to call, so maybe by this weekend that is exactly what we will do. Thank You

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Rosie, let us know how you are doing.  Its frustrating when you can't get people to listen. 

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited January 2009

    Just came back to this thread to find out more. You all have been busy. I agree with AlwaysHope's strong recommendation you see a breast specialist. I have never heard of Procardia being utilizedin breast disorders. You mention you have skin puckering and nipple alteration: I don't believe any of us here would recommend stopping short of a definitive diagnosis which includes biopsy or biopsies. A young PA should not be handling your medical care, but a breast surgeon should. From the American Society of Clinical Oncologists, here are oncologists in Syracuse NY. A call to their office manager should yield the name of a good breast surgeon or two. Also, a call to the local university hospital department of surgery should also yield a name or two of a breast surgeon:

     NameOrganizationCityStateCountryPhone1. Jeffrey Bogart, MDSUNY Upstate Medcl UnivSyracuseNY  2. Chung Taik Chung, MDSUNY Upstate Medcl UnivSyracuseNY (315) 464-52763. David B. Duggan, MDSUNY Upstate Medcl UnivSyracuseNY (315) 464-82004. Sheila M. Lemke, MDState Univ of New York Health Sci CtrSyracuseNY  5. Angelie D. Roman, MDHem Onc AssocEast SyracuseNY

    As some of us have been stung by delay or problems with diagnosis, please help yourself further by seeking a different groups opinion/care. You're doing a good job advocating for yourself, and bc.org offers much help. Please go to their home page also and read up on breast symptoms (@ bc.org).

    Keep advocating for yourself,

    Tender 

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    I have done just that I mean I have sought advice from other cancer groups and in fact I spoke with a survivor from Y-Me.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Rosie, I'm a 5 year IBC survivor.  It can be done if it is caught early and treated agressively.  Please let us know your progress with the doctor front.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    Dear Tender,

     I have read all that I can and that is why it makes me mad because they are not seeing it as I said earlier they think it needs to be fully engorged and beet red for it to be any sign of IBC.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Well, I could understand if they gave you antibiotics because IBC is often mistaken for a breast infection but ..procardia?  I just don't understand the thinking on that one.  If you do finally get a diagnosis and it turns out to be IBC, you need to file a complaint with your state medical board on that Doctor and his PA.  And not to want to see you for follow up for 2 months after putting you on Procardia???  This just seems wrong all the ways I can look at it.  I'm not a medical professional and maybe there is a perfectly logical reasoning behind all this but common sense tells me that this doesn't sound right at all.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    I was on antibiotics when I went to Urgent care because of the pain, my regular Dr's office was closed I was on that med for 10 days. I am in the middle of constucting some letters as we speak and one will go to BC/BS and to medical board.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    Well I live in Central NY(Syracuse) . I saw the picture and that is what I THINK is happening, this morning my breast is intense in burning.It feels like someone is sticking a  hot rod right thru the nipple,

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Rosie, I looked at those pictures too when I was first diagnosed.  Mine didn't look like those pictures exactly either.  We are all unique.  If you have breast skin involvement, then it is something serious and needs immediate attention.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    This morning my nipple is on fire it feels like someone is sticking a hot rod right thru the nipple into the breast.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    I just don't know what to tell you anymore Rosie.  I'm very upset that you can't get proper medical attention.  Maybe you should go to emergency care?  I am so sorry you are having to go through this.  :(

    If you could get to where I am I could/wouild get you in to see my breast surgeon.  He is the best and knew exactly what to do. 

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    Well I am either calling the Dr today or going to the ER, something has to be done, where might that be.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I'm in Arkansas and if you want to come here, I will find a way to get you into my doctor.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009
    Now I'm scared as now my other breast is also very purple tonite and very tender to touch, right above the nipple area on the outer edge but above it.Cry
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  • runalot08
    runalot08 Member Posts: 163
    edited January 2009

    Rosie,

    I am soooo sorry to hear this.  When is your next appt?  I am trying to think of something to tell you to try or ask and I can't.  After all of this you should have answers or the right tests you are doing the right thing and you are just getting the raw end of the deal.  I wish there was some sort of definitive easy method of confirming or denying all of this.  Maybe they will do some more biopsies.  Maybe on each breast and a node?  Did you get a second opinion about your MRI.  I think that maybe you can ask the doc for that too? I know I can not do or say anything for you to make it all better or go away but know I think about you everyday and think very good thoughts for you.  I do not go to church everyday or even pray every day but I have faith.  I believe that things always happen for a reason.  May be a really crappy reason or thing happening but something will grow from it.  One thing already... you have a bunch of friends and people pulling for you to get answers right at your finger tips.  I am one of them so keep doing what your doing you are strong enough to hang this long and you are pushing for answers.

    Sending some strength your way,

    Vickie

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    I'm thinking there must of been some kind of blood clot or something because when I very very gently touched the skin it hurt like you know what. I called my husband in right away to see it. that breast blew up and was purplish I mean purplish.Today it is tender but not swollen, what the heck is going on I have no idea.This morning when I looked there was red rash going from top to center of the nipple.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Rosie, go to emergency care.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    I think 1/2 of Syracuse knows what my breasts look like by now.I am so tired of them looking , lifting, prodding, my husband doesn't even get to see them that much.

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  • rosied51
    rosied51 Member Posts: 170
    edited January 2009

    Hey runlaot, we all pray when we have time. Some of us more than others but that's ok. I truly am grateful for all of you, I have no clue as what is going on and yes right now it is very disturbing. I guess I'm scared but who isn';t .I have to find someone who is knowledgeable and obviously these Dr are not.

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