Hi. I am wondering if there is anyone here who has heard of my current cancer and if there is a place or person I can get more information about this condition. Also, would like to talk to survivors.
Hi again Ronda - I talked to Annette Mattern, president of the Ovarian Cancer National Alliance, and she said her organization also offers support. You can find them at http://www.ovariancancer.org/. She said there are many peritoneal survivors in their network and they would definitely welcome your involvement.
Hi Ronda - Thanks for your question and welcome to EmpowHER. As someone who also has a rare cancer I know how difficult it can be to find solid information, and am happy to help.
Here are some links to resources with information on peritoneal cancer. For those of you who are not familiar with this rare cancer, it develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum.
Overview - http://emedicine.medscape.com/article/281107-overview
Peritoneal Cancer Foundation - this page provides links to multiple information resources: http://www.primaryperitonealcancer.org/ABOUTPERITONEALCANCER.html
This link is to a section on the Patient Power site about gynecologic cancers and includes an interview with a peritoneal cancer patient plus other helpful information: http://www.patientpower.info/program/ovarian-cancer-the-importance-of-early-detection/player/5484F600-5734-11DF-BC6600262D1CCBEC
American Cancer Society's Peritoneal Cancer Survivor's Support Network: http://csn.cancer.org/node/172971
You can sometimes find peritoneal cancer patients in support groups for ovarian cancer and/or gynecological cancers: http://www.dailystrength.org/c/Ovarian-Cancer/support-group
A support organization that I've found very helpful is cancercare.org. http://www.cancercare.org/get_help/special_progs/rare_cancers.php
Let me know if this helps, and if you have additional questions. We're glad to have you in our community!
HI Pat,December 5, 2010 - 6:24pm
Thank you! I will check out these sites right away. I am going to try the anti cancer diet. I was told my survival rate is 5 years. I am also a 15 year breast cancer survivor. I am trying to get a brca test but my insurance won't cover it. My oncologist suggested that I have this test as i have 2 daughters and this would be helpful to them. I can't pay for it so the oncologist is handling it(appealing their decision) and will let me know what happens there.
Thank You for your help.