The Silent Killer

I belong to an Ovarian Cancer List Serve, where women with ovarian and fallopian tube cancer communicate about their experiences, ask questions, discuss clinical trials and new treatments etc. Some days it is inspirational and there are several long term survivors writing that day. Some days it's all about who has lost their battle and it's not so inspirational. Today there was a link to an article about a four year old girl who was diagnosed with ovarian cancer. Four years old. That shocked me to the core of my being. I had a student who was diagnosed with ovarian cancer in 7th grade and I thought that was appalling. There's a girl on the List Serve who is 18 and her ovarian cancer did not respond to any treatment. She is under Hospice care.

When you read up on gynecological cancer, you will be told it is rare, and that of all women who are diagnosed with this type of cancer, only 1% have fallopian tube cancer. You will read that it is so rare that your gynecologist may never have seen a case of it. This is not true, in my experience. Including myself, I know of six women who have been diagnosed with fallopian tube cancer (FTC). One of them is Krissy, who lives ten miles away from us and ended up in at French hospital, sharing a room with me while we did the same chemo. There's a whole group on the Crazy, Sexy, Cancer web site called Women Without a Uterus. Bonnie and I made friends through that site, and she also has FTC. It's a relatively new technology that allows them to trace the cancer back to its origin, so many women who were diagnosed with ovarian cancer probably actually had FTC. The treatment is the same, so it doesn't really matter. It is not rare, and very young girls are being diagnosed and even dying of it.

They call ovarian cancer the "silent killer" because it is so difficult to diagnose. One may or may not experience any symptoms. My symptoms could have been caused by many different things, but I'm lucky I had some so my cancer was detected before it was too late. How many doctors would suspect gynecological cancer in a four year old or a thirteen year old? There is no definitive test. The CA125 can give a false positive for many reasons, and it isn't used as a diagnostic tool. A CT scan can show if you have a mass, but only a PET scan shows cancer. I didn't have a PET scan until long after my diagnosis.

Women and moms, if you or your daughters have any kind of abdominal pain, bladder pain, ovary pain, etc...ask for a CT/PET scan if the doctor can't diagnose it. Ask for a CA125 blood test. Pay for them if your insurance won't. This disease is a killer and early detection is key, as always.

Something is wrong with the world when a four year old has ovarian cancer.

Namaste,

Jill