For all the brave women (and their partners who love them) who sometimes feel there is no hope!!!! I was diagnosed in the ER (US) with metastatic peritoneal carcinomatosis 3C OC with ascites 11/20/15. I have had primary chemo, interval debulking with radical open hysterectomy/salpingo oophorectomy/resected bladder, 14" of large colon removed/temp colostomy, splenectomy, omentumectomy, appendectomy, an ablated diaphragm, kidney tumors removed, intraperitoneal cisplatin/taxol chemo and dose dense carboplatin/paclitaxel (carbo/taxol) chemo. Biopsies taken during surgery confirmed stage 3C high grade serous epithelial Ovarian Cancer.
Initially, I spent days googling my diagnosis. It was devastating. I could find no evidence of survival for my stage of disease-- so for all the newly diagnosed women, please understand that the data you find on the internet will not help you. Most of it is out of date. It's good to learn about your disease, but important to understand that what you need is the latest, most recent studies-- which can frequently be found on BioMedical Publications.
Most importantly, find the best gynecological oncologist surgeon available. The quality of your surgery is a predictor of your outcome.
I completed chemo Aug. 10, 2016 and had a CAT scan that showed no evidence of cancer, I now have a low normal CA 125 level and am currently NED for 18 months.
On Oct, 24, 2016 I had surgery to reconnect my colon. It was a challenging ostomy takedown as many adhesions had formed which adhered my remaining colon to other organs. My surgeon prevailed, however, and the anastomosis has been successful. The initial result, being minus 14" of my sigmoid colon, was that I had bowel movements 8-12 times a day. I now take Imodium, an anti-diarrhoeal, and have BM 5-6 times per day, which is not interfering with my life. I much prefer to use my natural plumbing over the ostomy bag, which did have a serious effect on my usual activities. The 6 biopsies taken during surgery showed no evidence of malignancy. I am currently in pathological remission.
Initially my 3C OC Diagnosis was dire. Ten years ago it would probably have been termed "INOPERABLE". I am now fine. I feel healthy. If this disease reoccurs I will be ready to fight it again. I have now been given more TIME to live my life, to make a positive difference in someone else' life and to enjoy my beloved friends and family. So, please, know there is help. Know that it's worth fighting hard to be given more time on the planet.
This journey is unpredictable and emotionally terrifying. This forum has been, and continues to be, a remarkable source for candor, inspiration and acceptance. It's a place of safety and support, especially when those close to us are already overwhelmed by our illness. With love for all of you. Tesla
PS, I like to crochet. It calms my nerves and takes me away from my troubles.