Very, Very, Scared

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motheroffoursons
motheroffoursons Member Posts: 333

Almost exactly 1 year ago, I was diagnosed with DCIS, did lumpectomy and rads.  Am on tamoxifin.  LAST WEEK i had a mammogram and they said it was clear.

Over the weekend my breast(same left breast) swelled up, turned redder than it did with rads, and is hard, warm, and painful.  I called my regular Doc. first  (she was out) and the PA prescribed antibiotics and pain killers.  She also wanted me to see the regular doc. to see if she wanted me to go to the oncologist.

When I got home and looked at pictures on line that seem to match how my poor little boob looks like, I freaked out.  I called my oncologist and have an appointment in the morning.  I really fear it is inflammatory breast cancer.

What really disturbs me is that I took the first diagnosis with aplomb, I did not get upset, and I thought, great, with a cure rate approaching 100% I have this thing beat.  Now I am really scared and upset.

Comments

  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2007

    motheroffoursons:

    You did the right thing by contacting your oncologist.  IBC is so difficulty to diagnosis and mammograms do come back negative.  I know how very scared you are I did not have the same symptoms as you I had a large mass on the outside of my breast and my mammogram came back negative.  I ended up seeing a surgeon who did a biopsy and he was just as shocked as I was when the path report came back as ibc.   

    I will keep my fingers cross that it is just an infection and not ibc.  Please keep me posted.  If you need to talk feel free to contact me.

    Good luck tomorrow!  I will keep you in my prays.

    Hugs from Michigan

    Laura

  • Lauralynne
    Lauralynne Member Posts: 123
    edited October 2007

    Dear Momof4-

    You are doing exactly the right thing by getting it checked out.  Don't get ahead of yourself here with too much worrying.  It may turn out to be something simple and easily treatable.  Let's hope and pray for that, okay?  

    Let us know.  We will be here for you.

    Lauralynne 

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited October 2007

    I am very fortunate in that when I need treatment, I have never had to wait for long periods. (I live in the Chicago area).  My dr. office saw me on Monday, the oncologist saw me the next day Tuesday.  He drew  blood for a tumor marker and ordered an MRI (which I was able to schedule for today, Wednesday).  So by Thursday when all the results are in I should have more information.

    He also gave me another possible scenario.  Something called radiation recall.  It is more like an allergic reaction that causes the breast to mimic the redness and swelling that often accompany radiation treatments.  These can occur for years after radiation.  I had worn a new bra last week, and I am not one of those people who wash clothes before I wear them.  There may have been some chemical that set me off.

    I am CHOOSING to believe it is radiation recall until proven otherwise. 

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited October 2007

    Hi, it is so scary not knowing.  I am glad that there is hope that it is something besides IBC, but don't rest until you know for sure what is causing your inflammation.  I pray that it is just radiation recall and not something more serious!  please keep us posted!

  • lexi4
    lexi4 Member Posts: 1,074
    edited October 2007

    Praying that this is not IBC and soemthing very treatable.

    Hugs and Prayers,

    Lexi

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited October 2007

    UPDATE:  I called the DR. office yesterday and the DR. said the MRI did not show anything remarkable.  (I guess that means no cysts).  Also said the lab did the wrong tumor marker test and blood will have to be withdrawn when I am scheduled to see him on Tuesday.

    I don't feel my breast is as angry red, but still quite pink and enlarged.  I had some of this peau d'orange stuff going on, but not as severe as most sights on the internet.  Also, the flat nipple thing. So the lymph nodes were/are definitely clogged but it has not been ascertained as to why.

    I will finish the one course of antibiotics and see if the DR. wants to do anything further on Tuesday about the nodes.  A couple are tender, but not really enlarged.

    I am holding my breath for now.  If the breast acts up again, I am going straight to Loyola Cancer Center, a large teaching hospital within reasonable driving distance.  I have been going to a fairly large regional hospital with a dedicated breast care center.

    Having any form of breast cancer initially reminds me of a metronome, that thing that marks time on a piano teachers table and swings back and forth.  One minute you say, oh this is nothing just yada, yada, yada and the next minute you are convinced you are terminal (however, in the long run, we are all terminal, breast cancer or not).

    Thanks for your input you that wrote. 

    Sharon

  • kimmie39
    kimmie39 Member Posts: 319
    edited October 2007

    Hi,

    Havent posted lately but am playing catch up tonight.

    I to had trouble with the diagnoses process.

    I have both my fingers and toes crossed. 

    Please update us soon, and post when ever you need help (even though I might miss a couple of days there is always someone here to help)

    Sending to blessings from Virginia

    Kim 

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited October 2007

    Update:  I went to the onco. today.  My breast is still warm, swollen, and a nice shade or pink, with some of the orange peel stuff.   (it is not actually as red and turgid as it was, but it and the nodes hurt more).  I have been on 2000 mg of antibotics for10 days.  It is still visibly abnormal.  I asked by onco. about what I do now, and about skin biopsies.  He said the MRI and mammogram showed no masses, so wait another week.  He said skin biopsies are not worthwhile because they are hit and miss.  What does he want me to do?  Wait a couple of weeks to get to stage IV with masses instead of IIIB?  I pressured him and he wrote a prescription for a ultrasound and biopsy at the breast center.  THe breast center, very nice, very thorough ended up doing another mammogram and ultrasound. They said I needed a skin biopsy with a surgeon.   They were more than a bit upset with the onoco. as he was "working me up in circles".  I felt more comfortable with their comment that I did definitely need a biopsy.  I immediately went over the the surgeon, and he did not have an appointment until Monday, but the nurse said she would try to get me in on Thursday.   I also made an appointment with Northwestern Hospital for Monday.  If my breast is not significantly better in a day or so, I am going to go there and forget the other hospital.  (Even though my surgeon and the breast center people are very competent.

    I wanted to scream at the oncologist, it doesn't have to have a lump to be breast cancer.

    Thanks for your input.  I see some of you went the rounds trying to get a diagnosis.  It could still just be mastitis, but it is just not clearing up yet.

    By the way, with breast cancer awareness month there are so many specials on TV (Like Lifetime) that relate a story about breast cancer.  I watch them with dedication.  HOWEVER, I find myself very upset when they get to the closing credits and have a list of people who "Lost their battle to breast cancer."  That really puts me in a funky mood.  I should turn off the TV as soon as the story line is over.  Anyone else feel this way?Smile

  • shrink
    shrink Member Posts: 936
    edited October 2007

    I watched all of the On Demand (Comcast) specials this month on breast cancer.  Like you, I found them to be very touching and informative.  The list of people of "lost their battle" was a sad reminder of what I don't want to think about but fear deeply. I do think they should be remembered and honored.  However, switching channels before the list appears seems like a good strategy to me.

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited October 2007

    momof4, I am glad that you are still actively trying to figure out what is wrong.  My cancer wasn't a mass on the mammo.  THe radiologist described it as sugar sprinkled thoughout the breast.  I had a surgeon do the biospy of the breast, he took a punch of the skin all the way through to the breast tissue.  I had 3 different kinds of cancer growning, invasice ductal carcinoma, focal carcinoma, and skin cancer.  No tumor or lump for me.....  Good luck!  I really hope it is just a bad infection and not cancer, but for your peace of mind you need to find out exactly what it is and get it better.

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited October 2007

    Question,  my breast is not as angry red as it was initially, but it is still definitly a different color than the other, and still has some orange d peau stuff.  Did any of you have a really red breast that "quieted down" to a rosy pink after the first week?

  • shrink
    shrink Member Posts: 936
    edited October 2007

    My redness came and went several times confusing me and the doctors.

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited October 2007

    My redness was really inflamed and red at first.  Then it faded, and it was a purplish pinkish color.  It steadidly got thicker and thicker skin, and the are got larger and larger.  Then my nipple inverted and changed thickness and color...

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