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bellesmom
bellesmom Member Posts: 24
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi everyone,

I have not been dx with IBC but am concerned.  I have been experiencing swelling and tenderness in my right breast for quite sometime and have had both a mammo and us come back negative.  My us showed that I had a 2" wide fibroglandular tissue which is normal according to my breast surgeon.  However, he did notice a swollen lymph node in my right armpit and is taking the "wait and see" approach.  His reasoning was lymph nodes can swell for any number of reasons and we shouldn't jump to any conclusions yet.  I went back and spoke to pcp and she was upset on why he wants to wait until my next appt in July before scheduling a bx or MRI.  The pain, tenderness, and swelling in my right armpit is something I cannot really describe.  If I try to sleep on my right side I wince in pain and although I have most of the symptoms of IBC the only one I do not have is the swollen red breast.  However, I have noticed on occasion at about the 10:00 position from time to time it will be pink but not red or hot.   I have already taken a course of antibiotics to no avail.  Can you all give me insight on how to proceed and what to demand to rule out any form of bc?  There are times I will even rub my chest bone between the breasts due to irritation and also instances of pain in my clavicle and scapula area. I also forgot to mention that there is a dimple in my armpit but they have dismissed it as cellulite.  Problem is its only on this side and not the left.  I do have about 40# to lose but I just find it somewhat ironic that this dimple is in the same area as the pain swollen lymph node.  My breast surgeon has suggested a breast reduction but will not take further steps to rule out breast cancer which I find puzzling.  I am not an overly big busted woman 44 D, but am willing to have it done if everything else is ruled out.  Sorry for all of the details and rambling just wanted to give as much information as possible so that perhaps the feedback I receive will help me at my next appointment.

TIA,

Rebecca 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited March 2009

    Rebecca:

    There is no need to apologize for the length of your post.  I'll try to answer your question as best that I can.

    Everyone's symptoms are all so different when I was dx with IBC it looked like I had some kind of dermatitis. I was sent for a mammogram at it came back negative  the only way to rule out IBC is through a biopsy. Make sure they get a sample from any the area that is thick or discolored.  I would definitely not wait until July.  If this surgeon will not do this for you get a second opinion.

    If you pcp is concern about this wait and see approach ask her for another name of breast surgeon.  I would ask at the time of making that appointment ask if the surgeon has every heard of IBC.  Allot of doctors have never heard of IBC.

    You may also want to ask for a PET scan your pcp can order this test.  Depending on your health insurance you may need to get an authorization number. 

    I hope this helped. Keep us posted on how you make out.

    Hugs

    Laura

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  • camsdh
    camsdh Member Posts: 10
    edited March 2009

    I agree with Laura...If you pcp is concerned, she knows you and your situation best.  I don't know what town or city you are in, but a comprehensive breast center with experience in IBC is an option you need to look into.  The pinkish area on breast is more concerning than a bright red area.  Pinkish purple is more associated with the symptoms than red.  As far as red and swollen, Cam, my wife, had IBC long before those symptoms. 

    All that being said, the odds or so much in your favor that it is a b9 condition, but do not wait and see.  You have some inflammatory symptoms, and an enlarged axillary lymph node,  and no response to antibiotic...IBC must be ruled out imediatly, not in July.

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  • bellesmom
    bellesmom Member Posts: 24
    edited March 2009

    Laura & Camsdh,

    Thank you so much for your reply to my lengthy question.  I live in CA and I have already been to a breast center for my mammo and U/S.  Do you know how I can go about researching this to find a specialist in IBC here in CA?  I am currently supposedly seeing the best breast physician in my area but I can just feel w/in he does not take my situation seriously.  Do you recommend a PET scan over an MRI to dx bc and if so why?  When I go back to my pcp I want to be prepared and not forget anything which usually happens.  Also, what websites do you recommend for me to gather my information on IBC to present to her?  She is wonderful and I would like to give her a chance to go over it so that when I see her we can make the best plan possible to finally get to the bottom of it.

    TIA,

    Rebecca 

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  • camsdh
    camsdh Member Posts: 10
    edited March 2009

    Bellesmom

    The MD Anderson website on IBC and IBC clinic is informative

    Ibcsupport.org is a place to ask questions with longterm survivors many from California

    ibcresearch.org has information and pictures

    eraseibc.org

    Breastcanswers.com is a place I hang around and try to help..

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited March 2009

    Rebecca:

    PET Scans are more powerful then MRI's and will pick up "hot spots".  Last year my chest CT picked up some swollen lymph nodes so prior to have some removed for biopsy I was sent for a PET scan.  This was done so that the surgeon would know how many nodes he would have to take and if chemo or rad were needed.

    There are two IBC clinics that I know of one is MD Anderson in TX and the other is at the University of Michigan in Ann Arbor.  Your pcp may also want to call one of these locations and talk to one of the specialist there.

    I hope that this helps

    Hugs

    Laura

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited March 2009

    camsdh:

    I hope all is well with you and cam.

    Hugs

    Laura

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  • camsdh
    camsdh Member Posts: 10
    edited March 2009

    Thank you and bless you Laura

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  • LisaF
    LisaF Member Posts: 200
    edited March 2009

    Where are you located in California?  I have a good friend who had IBC ten years ago and is doing fine.  She went to UCLA.

    But, I would insist on a biopsy!

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  • bellesmom
    bellesmom Member Posts: 24
    edited May 2009

    Hi everyone,

    Tomorrow is my appointment to have this swollen lymph node investigated further.  I am going to my PCP who is wonderful and we have already done the antibiotic route to no avail.  Can you give me some questions to ask that I may not have thought of?  I have spoken with my husband about asking for a CT scan since I do not see my breast specialist until July.  I would like to add that my breast is still swollen and I have intermittent itching in between my breasts and my shoulder blade that does not seem to go away.

    Any advice would be greatly appreciated.

    TIA,

    Rebecca 

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  • bellesmom
    bellesmom Member Posts: 24
    edited May 2009

    Gg08,

    I just wanted to let you all know that I saw the doc this afternoon and she is concerned that this lymph node is still swollen and with the redness/pinkness she is convinced that it is IBC.  However, she is sending me to another breast surgeon because the one she was sending me to has flaked out.  By that I am saying he was to biopsy this back in Feb per my PCP and he never contacted me to schedule it so she is sending me elsewhere for a 2nd opinion.  I will find out tomorrow when/where that will be.   I will be so glad when we get to the bottom of this and am so thankful for everyone here for insight and information.  Hopefully I will not have to wait too much longer for a dx.

    I'll keep you posted.

    Thanks again,

    Rebecca 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited May 2009

    Rebecca:

    Good luck at your second opionion appointment! 

    Hugs

    Laura

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  • bellesmom
    bellesmom Member Posts: 24
    edited May 2009

    Hi Gg08 and Laura,

    I do not have second opinion appointment until 6/4 at 10 am which of course does not sit well with me but not much else I can do.  They did say they would call me if there was a cancellation which I pray there is.  All I can say is my breast is so sore and swollen that even my DH noticed it the other day as I was dressing.  The lymph node can now be felt without pressing deep in my underarm.  Its still red at the 9 o'clock position and everyone once in a while I notice an increase swelling at about 10 o'clock almost as if there is a "bubble" protruding.  Yes I am still itching like crazy especially in my scapula and between my breasts and now I am at the point of losing sleep due to pain.  Any direct pressure causes me to cry or awake from sleep.  Sorry to unload but I am very discouraged with it all simply because I once again have to wait.  My PCP is convinced that it is IBC, but she can't say that w/o biopsy results.  I trust her and I do have to say that in most instances when she believes that something is wrong about 99% of the time she is correct. I am currently waiting for her to phone me with my u/s results of my abdomen because she said she felt a mass on my left ovary.  When she does I will ask her to give me something for pain and see if she will schedule me for a CT scan of this breast.

    BTW,

    thank you for thinking about me that was really thoughtful of you.  I'll keep you all posted on what is happening.  

    Rebecca 

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  • bellesmom
    bellesmom Member Posts: 24
    edited May 2009

    HI everyone,

    I wanted to ask a quick ? b4 my appointment on 6/4.  Would you ask for a CT scan b4 having an invasive procedure like a biopsy?  I would rather go the route of a CT scan first and then if its necessary have a biopsy.  What are your thoughts?

    TIA,

    Rebecca 

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  • DianeE
    DianeE Member Posts: 176
    edited May 2009

    Rebecca,

    A biopsy is considered the gold standard, but a negative biopsy does not mean that IBC is not there.  Could your PCP order the diagnostic testing so that when you do have 2nd opinion the results are available and you do not have to wait ?  Have you had a mammo? I would think ultrasound and MRI would be a good place to start.  A PET/CT would probably be best, but without the a cancer diagnosis, I do not know about insurance coverage.  Have your PCP start pressuring someone to see you sooner.   They can find a spot on the schedule. 

    Good luck

    Diane

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  • bellesmom
    bellesmom Member Posts: 24
    edited May 2009

    Diane,

    I have had both a mammo and u/s and both have come back negative.  I know my PCP has been hesitant about ordering any diagnostic tests because of insurance concerns which I totally understand.  I placed a call to her and am awaiting for her office to call back so we can discuss this.  I am at a point where I want and deserve answers not to mention a good nights sleep which I haven't had in quite awhile.  

    Thank you for answering my question.  When I hear anything I will be sure to pass it along.

    Rebecca 

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