Question about symptoms my daughter is having - IBC?

Options
DianeMarieWA
DianeMarieWA Member Posts: 47
edited June 2014 in IBC (Inflammatory Breast Cancer)
Question about symptoms my daughter is having - IBC?
· Share on FacebookShare on Twitter

Comments

  • DianeMarieWA
    DianeMarieWA Member Posts: 47
    edited January 2008

    Hi,

    My 34-year-old daughter sat me down on Friday and told me that for the past four or five months she has noticed swelling of her right breast, pain in the right breast, as well as an inverted nipple.  Why she let this go so long is beyond me, but I believe she was probably hoping it would go away, and her comment was "I didn't want to worry you because you already have so much on your plate".

    Having just had a lumpectomy with unclear margins and eventual left breast mastectomy myself in 2007, I know just enough about the various kinds of breast cancers to wonder if in fact this doesn't sound like it might be IBC.  My BC was for DCIS, not IBC.

    She had just seen her doctor before she told me about all this on Friday, and her doctor did a thorough breast exam on both sides, including lymph nodes in the axillary region.  Her doctor (actually an NP), did not find any lumps.  She did order a mammogram with ultrasound to follow if needed, which is scheduled for January 22.

    I have read just enough about IBC to know that it is very important to get diagnosed and begin treatment ASAP.  So, my first question is, is January 22 too long to wait or should we push for an earlier mammogram date?  It is also my understanding that biopsy is vital in diagnosing IBC and should she be getting that first?

    Well, you can see I have lots of questions and would appreciate it so much if any of you who have been diagnosed with IBC could help me out.

    Thank you.

    Diane 

    · Share on FacebookShare on Twitter
  • kimmie39
    kimmie39 Member Posts: 319
    edited January 2008

    HI

    iM 39.

    First lets clear the fact that there does not have to be a lump to be IBC.

    Ive had BC twice and it has yet to be seen on a mammogram!!! Hard to believe but true.

    My IBC did not show on a mammo or ultra sound. The MRI picked it up but I had to be Very Pushy to get the doc to order one.

    It ended up taking me 3 months to be diagnosed.

    Dont let this happen to your daughter esspecially sense shes waited to be seen.

    Kim 

    · Share on FacebookShare on Twitter
  • DianeMarieWA
    DianeMarieWA Member Posts: 47
    edited January 2008

    Hi Kimmie,

    Thank you very much for your quick response.  I appreciate it.  So you are saying she needs to have an MRI first?  MRI, then if it shows anything a biopsy?   

    · Share on FacebookShare on Twitter
  • lexi4
    lexi4 Member Posts: 1,074
    edited January 2008

    Hi Diane,

    I second Kimmy's opinion. Reall, she needs to be seen by a breast specialist. At least a doc that will order a mri or pet scan if no lump is detected. Most likely she does not have bc. But, having a first degree relative with bc may up her chances of the disease.

    Please know that I am saying a prayer for her now. No cancer!!

    Lexi

    · Share on FacebookShare on Twitter
  • watergirl
    watergirl Member Posts: 34
    edited January 2008

    Your not far from the Cancer Care Alliance in Seattle, they have some of the best breast cancer specialists in your area.  I encourage you to suggest your daughter visit them regardless of what the local docs say.

    · Share on FacebookShare on Twitter
  • DianeMarieWA
    DianeMarieWA Member Posts: 47
    edited January 2008

    Thanks for the responses.  Here is an update on my daughter - she had a bilateral digital mammogram followed by ultrasound last Friday at the Breast Care Center at SW Washington Medical Center.  The radiologist came in and sat down with her and said they see three areas of concern.  One is right behind the nipple, which may be tethered to it causing the inverted nipple and a second area which is up a ways from the nipple area.  The third is in her right axilla.  She will be having biopsies of all three areas this Monday.  They have a pathologist on site so they will be able to give her the results at that time.

    I'll post an update once we know what is going on.

    · Share on FacebookShare on Twitter
  • DianeE
    DianeE Member Posts: 176
    edited January 2008

    Hi Diane,

    I am a 40 year old who was diagnosed in July with what MDs are still trying to figure out.  My first advice is to make sure your daughter sees a breast specialist, has SN biopsy done and seeks a second opinion.  My unusual case is that I had symptoms of enlarged breast after my period, which then turned red.  I felt a lump, which turned out to be a lymph node.  I went in right away and first had ultrasound which showed diffuse area of inflammation.  Mammo showed 4 areas of concern and MRI was greatly abnormal.  On sterotactic biopsy, idc was found with some dcis mixed in for variety.  I had 6 rounds of TAC, a double mastectomy with axillary disection on affected side (1 tiny node remained +/22) and am currently undergoind rad tx.  The problem is that when my port was placed, I had a skin biopsy which was neg for IBC.  My IBC symptoms disappeard immediately when chemo started, and my tumor was ER/PR + Her - BRCA- .  The Rad Onc does not believe I have IBC, but that my lymph node was so large that it was blocking drainage of the breast.  The Onc thinks it is the "weakest" case of IBC he has seen but will still not call it anything else.  So it has been frustrating to not have a clear answer.  Anyone else have similar problems with diagnosis?  I did not get a second opinion as time was felt to be so short to start chemo and I was assured the treatment was aggressive.  Thanks for reading.

    · Share on FacebookShare on Twitter
  • lexi4
    lexi4 Member Posts: 1,074
    edited January 2008

    DianeMarie,

    Still holding out hope for your daughter. I hope that they give her clear anwsers very soon. Will be thinking of you both tomorrow.

    Hugs and Prayers,

    Lexi

    · Share on FacebookShare on Twitter

Categories