Lobular specialist at Sloan-Kettering?

CCS648
CCS648 Member Posts: 41
edited September 2017 in ILC (Invasive Lobular Carcinoma)

My abdominal pain is worsening daily, and the weight loss continues (more than 20 pounds in the last 3 months). CT showed nothing. Endoscopy/colonscopy revealed no apparent problems, although still waiting on biopsies. My doctor wants to send me back to Sloan for a second opinion, which I think would be a good idea, because I can't keep taking painkillers just to get down a few bites of food.

Does anyone have any recommendations for an oncologist at Sloan who specializes in lobular BC? I am a bit skeptical about the CT report here, because I have no confidence that our small-town radiologists will find gastrointestinal mets, since they don't even always show up on scans. I'd like someone who deals with ILC on a regular basis.

Any thoughts appreciated.

· Share on FacebookShare on Twitter

Comments

  • CCS648
    CCS648 Member Posts: 41
    edited June 2017

    biopsies all came back negative. Ultrasound showed no gallstones. Down 2 more pounds since last week. I'm pretty frustrated.

    · Share on FacebookShare on Twitter
  • Lexicoe
    Lexicoe Member Posts: 66
    edited July 2017

    I don't know any lobular specialist at Sloan but wanted to chime in and say I hope you've gotten some kind of answer by now!

    I wish we had a thread listing lobular specialists all over the country.

    · Share on FacebookShare on Twitter
  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited August 2017

    Also would love ILC list of some sort. ;)

    · Share on FacebookShare on Twitter
  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited September 2017

    I know this is an older thread, and I hope you are doing well CCS.

    Thought I would add that I went to my first surgical and MO consult at Sloan yesterday. I wanted to be seen as soon as possible so did not request specific MSK doctors. I was very comfortable with both the surgeon and especially the oncologist and their level of familiarity with treating ILC.


    · Share on FacebookShare on Twitter

Categories