lobular with painful abdomen - help needed

intheclub
intheclub Member Posts: 46
edited June 2014 in ILC (Invasive Lobular Carcinoma)

hello lobular friends. Ive had tummy bloating and I feel like there is a weight in lower abdomen. Ive just had clear colonoscopy and need to look at next steps.  Should I have an endoscopy or something else. I have a real feeling something isnt right in my lower abdomen. Ive been talking about it to oncologist and he will invedtigate but all my pet cat scans are clear. What is the best tests I can do. Its like a deep weight that aches. Maybe its ovaries ? Any ideas appreciated.  I had left masectomy last year for lobular.no chemo but doing tamoxifen and zoladex.  Thank you

· Share on FacebookShare on Twitter

Comments

  • Momine
    Momine Member Posts: 7,859
    edited December 2013

    Have they done a diagnostic ultrasound of your uterus and ovaries? Is your onc doing tumor markers?

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013

    Ultrasound and/or CT scan of pelvis & abdomen.

    · Share on FacebookShare on Twitter
  • intheclub
    intheclub Member Posts: 46
    edited December 2013

    Thankyou my onc doesnt like tumor marker tests he thinks unreliable and I havent had pelvic ultrasounds. Ive had pet scans - bone scans. My worry is that lobular is often missed on scans so I want to investigate with other ways. I was wondering about transvaginal ultrasound and an endoscopy - its hard to tell whether my symptoms are abdominal or gynecological but I seem to err on side of abdominal. Im quite sure there is fluid or something building up. Im going to see my gp this morning. I ate a green salad yesterday felt like a weight inabdomen plus I am just so tired. My blood pressure really high due to bc meds and maybe the new meds making me tired. I am just so aware of what lobular ladies say about recognizing how u feel.  Thank u again.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Pelvic ultrasound of your ovaries and uterus.  And if your oncologist won't call for it, get in touch with your gynolocologist right away.

    · Share on FacebookShare on Twitter
  • lekker
    lekker Member Posts: 594
    edited December 2013

    intheclub- what did your GP say?  How are you feeling?

    · Share on FacebookShare on Twitter
  • Mompsych
    Mompsych Member Posts: 516
    edited December 2013

    unfortunately, when I had an endoscopy, they found ILC cells in the lining of my stomach (I already have bone mets).  If nothing shows up in a pelvic ultrasound, you may want to get an endoscopy.  Good luck with this; it is scary not knowing...

    · Share on FacebookShare on Twitter
  • toomuch
    toomuch Member Posts: 901
    edited December 2013

    Intheclub - Does your GP do your gynecologic exams. I agree with the other ladies that you should have pelvic imaging, ultrasound &/or CT but I also think that you need a good gyn exam. I hope that you get relief from your pain soon.

    · Share on FacebookShare on Twitter
  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited January 2014

    Hi intheclub, I was diagnosed with ilc metastasizing to the outside of my colon and the lower part of my stomach.  I was having stomach pain but thought I had a stomach ulcer because of all the meds.  My MO found I had a problem because tumor markers were elevated.  I had a bone scan, PET and CT followed by endoscopy and colonoscopy.  Ct found enlarged duodenum and "thickening" in the walls of my colon.  GI got enough with fine needle biopsy to diagnose ilc on the outside of my GI tract.  The PET scan I had last march was perfectly normal.  I'm now taking afinitor and aromasin.  I don't have any advice except get follow up even if you have to get a second opinion.

    · Share on FacebookShare on Twitter
  • mommacain
    mommacain Member Posts: 10
    edited April 2014

    I have been having abdominal pain for almost a year.  My CEA markers are steadily rising, now at 7.6.  Oncologist scheduled next blood test for June 2014.  Last colonoscopy was clear.  Dr. said pain was from everything being moved around during my DIEP.  Mom died of colon cancer in 2011. I am confused and this is pushing all my anxiety buttons.  Appointment with GP next week.  Any ideas or question I should be asking.  Usually I walk to relieve my stress but now have sprained ankle.

    · Share on FacebookShare on Twitter
  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited April 2014

    mommacain,  It doesn't sound unreasonable to ask for a CT just for your peace of mind.  I know they aren't handed out like candy, but with rising CEA, your mom's colon cancer history and some abdominal pain, I would want to know why I would be refused.

    It's really unusual for ILC to met to the abdomen, but it happens.  That was my first diagnosed metastasis. 

    Hugs & hoping it's DIEP pain!  MaryAnne

    · Share on FacebookShare on Twitter

Categories