Blondiemom's Journey with Liposarcoma

Patient: Sarcoma - Adult Soft Tissue Cancer > Liposarcoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Female, Age: 46

  1. 1
    over 4 years ago
    Blondiemom's Avatar

    Surgery

    Procedure or Surgery

    Radical right nephrectomy and tumor removal.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    over 4 years ago
    Blondiemom's Avatar

    Other

    Other Care

    I meet with the sarcoma specialist at UCLA tomorrow. :) hope to have a cancer kicking plan of attack, finally!

    1 Comment
  3. 3
    over 4 years ago
    Blondiemom's Avatar

    Diagnosis

    Oh No

    The beginning.... Hi!!! I'm Jeanne (hence the "I dream of" title) I am- well was- but am- a healthy happy funny kick XXX chick! I'm a mom to 4 great (kinda grown-23,19,17 and 15) kids and my loves (6yo) daughter. This is my story of cancer....... On April 23, 2013 I was doubled over in pain at the ER- my appendix was bursting- it had to be, OUCH- it was really painful! After being poked and prodded I started to feel better. I might or might not admit to having XXX a few times in the ER which led me to believe that maybe I just had gas and the cute Dr was going to come in at any second and laugh at me. I decided to sneak out. Is that even possible?!?! I got out of the bed gurney-thing and leaned over to put my sandals on for the escape- OUUUUUCHHHHHH- maybe I should stay- back into the bed I went. A few million hours, a CT scan, IV drip, and a few puzzled looks later the cute Dr came back to tell me the good news- I did NOT have appendicitis!! However, I did have a large mass on my right kidney. AWHAT?!?! Mass as in TUMOR? No, I don't think so. Tumor means cancer and I don't have that. Uh uh. The next day, I was a bit freaked out and pretty much threw a fit until the girl at my GP's office agreed to get me in that day. No, I can't wait until tomorrow I have an alien inside me! The GP sent me to the urologist. Where, again, I threw a tantrum until I got in the next day. He took one look at my scans and referred me on to someone else - sigh! I just want this "thing" (we aren't calling it a tumor yet) out! Finally, the following week I get in to see HottieDr and after CT's, X-rays, blood work etc... He decides that surgery is the best choice. The likelihood of it being cancer is pretty high but, kidney cancer is pretty easy as far as treatments, take it out- heal up- whammo bammo you are good to go on with your life.... WHEW! I get to keep my hair! Now THIS my friends is where I jinxed myself. I had a 7% chance that this "mass" was NOT going to be malignant -ok, ok, not great odds but that night I wrote on my Facebook page that I KNOW I'm special and that I KNOW that I've always done things that defeated the odds so I'm SURE that I will be in the 7% blah blah blah.... Few weeks later (May 9th) I had a radical right nephrectomy and tumor removal (yes, now it's officially a tumor, boo). After surgery HottieDr came by to say "the tumor was wellllllll unuuuuuusuall". WTH does that mean?! To ME it meant benign- if you are expecting cancer and its different, that means not cancer, right?!? I'M SPECIAL ALL RIGHT...... The local labs didn't know what it was.... They sent the tumor (slides) to Stanford..... Stanford wasn't sure what it was...... They came back with a diagnosis of high grade liposarcoma but, since it seems to have originated within my kidney (as opposed to ON) they were stumped. On to the local oncologist who says they just rec'd my PET scan and they found a small spot on my lung and a 3rd tumor just under my uterus (but, deep). He is going to refer me to UCLA however, he would treat me with A) hysterectomy and tumor removal B) resection the lung to take that out C) a round of radiation on all 3 areas and finally 6 months of chemo (5 days on 3 weeks off). Guess I'm not going to keep my hair after all. UCLA - forget everything you've heard we are starting from scratch. Come back in 10 days, we'll redo your pathology report and meet with the tumor board- until then, just go back to your life. As if THAT'S possible with words like "high grade liposarcoma" "lipoblasts" "3rd tumor" and "sheets of pleomorphic cells" are swimming around in my head. I go back to UCLA on June 18th.

    1 Comment
  4. 4
    over 4 years ago
    Blondiemom's Avatar

    Surgery

    Procedure or Surgery

    I had my second surgery Monday July 8th (2013). The PLAN was to remove the tumor (my oncologists words were if it quacks like a duck and walks like a duck we have to assume.... It's liposarcoma), remove my uterus, get clean margins. However when the surgeon got in there it was NOT a duck!! I had an inflamed right ovary (removed) and an inflamed fibroid (removed) NO CANCER! Because it now looks like I do not have mets I get to steal clear (at least for now) from chemo. I will begin radiation next week.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments