no surgery?

Doclin Member Posts: 2
edited March 2014 in Breast Cancer #1
I'd like to know if others have had the experience of my sister who has inflammatory breast cancer with mets to the spine and lungs. From the beginning, the docs have said surgery to remove the primary cancer in the breast isn't really under consideration. Her way of coping is to avoid any knowledge of her prognosis so she can take things one day at a time. I'm assuming it means they're working toward extending her life and alleviating symptoms, but they forsee short-term survival. She has significant lymphedema in her arm, and now the affected breast has swollen to twice its original size. The docs say there's no new cancer in the breast, just lympatic fluid. Any advice?


  • Ellison
    Ellison Member Posts: 68
    I have no experience with this but if I were her I would ask for another opinion. Something seem not right. Of course I do not know all the facts.

    I wish her the best. Please keep us posted.
  • seeknpeace
    seeknpeace Member Posts: 259
    Hi...I am so sorry that you and your sister are having to live through this. Cancer is such an evil disease.

    I, also, did not experience this but, I agree that she needs to get a second opinion and not waste any time. I am guessing that they took her lymph nodes? Why did they not do a mastectomy then? I am so sorry. I hate bc. Jan
  • wildangel
    wildangel Member Posts: 81
    I did a lot of research on IBC because they thought I had it. It turned out I was so badly burned from the radiation that it just looked like it. I had the inflamed breast and the skin was hot and red and had stripes across it. My arm blew up too. The docs wound up removing almost the whole bottom of that breast to remove all the dead skin causing the infection.
    From what I learned was that even if you had a mastectomy IBC can come back because it spreads across the skin. So saying she won't need surgery may be where that train of thought is coming from.
    There are a lot of doctors who believe that if someone has IBC that is it. No chance so do nothing. THAT IS NOT SO!!! You should absolutely get another opinion!!!
    The standard is now neo-adjuvant chemo FOLLOWED BY mast then rads. Of the people I know who have IBC and had THIS DONE they are still alive and living.
    DON'T GIVE UP. Get a better team!!!

    Good luck!

  • jeancmici
    jeancmici Member Posts: 665 Member
    Inflammatory Breast cancer is always correctly treated with chemo first to shrink the tumor - then surgery - this prolongs life. Surgery first used to be the death sentence. Ask but trust docs are on the right path because they knew so much more now about IBC than a few years ago.

    Good Luck, Jean
  • Mbladet
    Mbladet Member Posts: 12
    I was diagnosed with invasive DcIs, lcis this summer. A woman I know was such an inspiration to me. She had inflammatory BC. surgery, chemo and was told her prognosis was 0 percent to live past 2 years.....she is 12 years out and doing great -- she is my inspiration. I can't imagine what you are feeling but I agree, you need another opinion. Good luck, God watch over you!