so many questions for TN sisters

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Cleb
Cleb Member Posts: 28
edited June 2014 in Triple-Negative Breast Cancer

Hello there to all of you precious souls that are diagnosed with the enigmatic TNBC.  As you all know, when you hear "you have cancer" how your life changes.  I was diagnosed on 8/12/10 with a lumpectomy on 9/01/10.  My bs examined both of my breasts prior to surgery.  She did not feel the smaller lump which I found  with bse.  Scinti confirmed it.  I start my 3rd round of A/C on the 27th of Oct. which I get every two weeks.  I do have a port in place.  My malignancy was a 2.5 cm 95% IDC with 5% DCIS focal.  I also had a biopsy June 19, 2009 for small a small lump in   the same location as my tumor.  The breast health navigator from 09 was a little dismissive as she explained to me that it was a papilloma and said it was nothing to be concerned about, it was nothing more than a "freckle". My problem is that the small lump on  my left has changed from palpable to very hard, feeling a lot like the tumor on my right breast prior to lumpectomy. Can you develop additional malignancies during chemo?  The irony of all this is that my precious mother also has breast cancer and I left my job to care for her.  She is disabled due to Rheumatoid Arthitis and has had to endure many surgeries for that.  She had an mx of left breast with wound site bursting open.  We did woundvac and many months of sterile dressings, weekly debridment (sp?)  She was left with an unbelievable scar and severe lymphadema not only in her arm but basketball sized sac of fluid under breast scar.  Neither my mom's nor mine showed up on mammogram.  I want to know if  anybody else has had this happen.  Can you still develop tumors during chemo.  So in summary, while I was taking care of my mom, I also had breast cancer and it was missed, my mom went to the doctors for 3 years with all the signs, but only her new obgyn knew what she was looking at.  I see onc Wednesday, before chemo.  I hope that he takes this change seriously.  If any of you have found lumps during chemo, please let me know.  I refuse to let anything else go undetected or dismissed.  I wish that a test could be developed for people like me and my mom.  I hope I haven't rambled but I have so many questions and am so emotional and as I write, am having pain in right armpit and two days ago it was same pain under my collarbone.  Please respond to any of this if any of you have any input.

Thanks so much for the free therapy. 

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  • Titan
    Titan Member Posts: 2,956
    edited October 2010

    Hey Cleb...just wanted to say I'm sorry for all that you have been through!   Make sure your onc takes a look at your area of concern.. you need to know exactly what this is.

    My lump was not found on a mammogram..found it myself 6 months after a clean mammo..I think that is just how TNBC is..very fast growing...

    I also had to have a biopsy on my "good" breast after chemo but b-4 rads.  I had calcifications but they were benign.

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  • Cleb
    Cleb Member Posts: 28
    edited October 2010

    Hi Titan,

    I see onc on Wednesday before 3rd round of A/C.  I will most certainly get an answer.  As we speak, my mom has a patch on her leg that looks just like her dcis presented.  Since we share oncologists, I'll take her with me.  Will they ever come up with a test for the 20% who mammos don't work on.  What are the odds that mother and daughter could present with bc and mammo and doctors missed both of ours.  Hope they have a test in the making.  As for what you just told me, I'm so sorry.  Until I found you precious people on this thread, I really didn't have a clue about TNBC. Bless your heart.  Thanks for not letting me think I was crazy.  I wish you the best and stay in touch.  Thanks 

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  • thenewme
    thenewme Member Posts: 1,611
    edited October 2010

    Hi Cleb - so sorry for all you've been through!  

    Sending good thoughts for you and your mom both for benign news!!

    Have you and/or your Mom had BRCA testing?

    Hang in there and let us know how it goes!

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  • thenewme
    thenewme Member Posts: 1,611
    edited October 2010

    Hi Cleb,

    Thinking about you and your mom today!

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  • Cleb
    Cleb Member Posts: 28
    edited October 2010

    Hi friends,

    I hope this post finds all my new TN friends well today and ofcourse all of us in this sisterhood.

    Went for 3rd round of A/C.  I had a fever so they rescheduled me.  I had to have xray on port and lungs to rule out displacement of port and pneumonia.  Since my mom is not doing very well right now I had to decline on admission with promise that if temp exceeds 100 again tonight I will go to e.r.  As for lump in good breast, my onc was not in today so I saw an associate.  Very competent but he was much more concerned about the infection.  I didn't run to the e.r. as I was instructed so it cost an extra week of chemo.  I hope this will wait till next week.  I'm sure it isn't going anywhere. 

    To Titan and TheNewMe, I printed your posts for my mom to read and she cried.  She saw how your interest and caring for the two of us affected me and she was soooo thankful.  She said "Robin, how precious are they?  And they've never even met you."  So you can see why I have worked so hard to keep her going.  She, as are all of you, a beautiful soul.

    Does anybody know what the rule of thumb for IDC is.  Does it normally start out as DCIS?  I thought it did, but I don't know why I thought that.  On my surgical pathology report it is blank where nipple and ducts are listed.  I found that curious.  I did have a lumpectomy though.

    I feel like I'm drowning in too much info.  It's temperature check time.  In 3 hrs time if my temp. is up I gotta roll.  Love you all and thanks for letting me talk.  Next time we speak I'm gonna find out a lot more about the two of you girls.  See ya!

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  • thenewme
    thenewme Member Posts: 1,611
    edited October 2010

    Hi Cleb!

    That really stinks about delaying chemo, but hopefully it's just a "blip!" and not an infection. Please do take it seriously, though - if you have a fever today, definitely go in and get it checked out.  Your immune system is so compromised right now, and you want to keep everything under control. How are you feeling?  I assume the chest x-rays were all clear.  Do you have any symptoms of any kind of infection?  Do you get the Neulasta shot the day after your chemo to help boost your immune system?  

    Please give hugs to your mom.  I know what she means about strangers on the internet, but it's different here.  It really is a sisterhood, and we really do develop connections that actually sometimes feel more "real" than people we know "in real life," just for the common experiences we share.  It's often easier here to share the ups and downs of breast cancer, whereas in real life it's easier to not focus on and not talk much about, for so many reasons.

    Yes, I'm pretty sure IDC usually comes from DCIS.  Most of us (including me) who have IDC also have some DCIS, but the IDC sort of trumps the DCIS diagnosis. You can see in this photo how it progresses from normal cells to DCIS and unfortunately for us, IDC.

    DCIS_IDC

    http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp 

    Hang in there - rest up and drink  lots of fluids!  It helps a ton with all sorts of issues (dehydration, chemo flushing, headaches, constipation, nausea, etc....).  Ah the joys of chemo.  Let us know how you're doing when you have a chance!  

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