14 year,stage 4 survivor

grannyto2 said:

Peritoneal Cancer
In early 2008 I was passing blood. I went to the doctor and was diagnosed with a bladder infection. The bleeding continued and I was sent to the urologist for a look into my bladder. I also developed pneumonia. Finally the bleeding stopped. I had asked my primary care doctor if he thought I could have ovarian cancer. I had a complete hysterectomy at age 31 and now I was 64. He couldn't say. Anwway, a year later, January 2009, the blood appeared again. I went right to the urologist. Another scope said my bladder was fine. Then I went to the primary, another bladder infection. Five rounds of antibiotics, no relief. Also the odor was like something dead. I had zero energy. I borrowed two tampons from my daughter in law, to see if the blood was indeed coming from my bladder or from my vagina. The sight of blood on the tampon scared me. I called and made an appointment with a gynacologist. I had decided I was going to die if I continued to wait for the primary to find what was wrong. The gynacologist took a look and was very alarmed that there was tissue in my vagina that should not be there. She did a sonogram which showed a mass behind my bladder. She asked if I was sure they had removed my uterus, because this blob looked like one. She sent off the tissue and the next day gave myself and my family the bad news. She scheduled me in to see a gynecological oncologist. Two weeks later I had a very major surgery. I lost a section of my colon, my vagina and cuff had to be disected and put back together. The cancer was invasive in the lymph nodes in my pelvis, but not in the upper abdomen. Twenty days after surgery I started Taxol and Carboplatin. It was so difficult. I was in bed for eight days with severe pain. Then I was so weak, I could barely get to the bathroom. After three Taxol treatments he decided it was just too hard on me and changed to Taxotere. I had three more treatments. I still had pain, still spent many days in bed, but it was not quite as bad. Another CAT scan was done and my cancer markers on the blood tests were in the 4.5 to 6.6 range, so I did not have to have radiation. I feel good. The last blood test was 4.5. I just had another CAT scan. He told me the cancer can come back. I am just so thankful that God has given me more time with my family. I just work now and then. I rest and take care of my family. Each holiday and birthday that has been celebrated in the last year is cause to stop and say thank you to God for the blessing of life. As late spring and early summer came, I remembered where I was a year ago! Wow, I have so much to be thankful for. The skill of my surgeon/oncologist, the chemo and God, allowed me to see my oldest granddaughter have her 13th birthday. I keep asking God to please allow me to see her graduate-from high school, college and medical school-she wants to be a doctor. I try not to dwell on the "it can come back" and take each day as a wonderful gift.

kikz said:

Great news
I am so happy you are doing so well but at the same time the scenario of missed diagnosis or no diagnosis is appalling and yet so common to the many women faced with these diseases. We cling on to whatever bits of good news we hear but I pray for a time when good news is the norm.

I long to scream out about ovarian cancer. They say it is rare, it accounts for only 3% of cancers in women but to the women affected by this disease there is nothing rare about it. It seems because it is not that common it does not get the attention needed to find a cure or at the very least better treatment options.

This is a quote I took from the Ovarian Cancer National Alliance website:

According to the data, the mortality rates for ovarian cancer have not improved in thirty years since the “War on Cancer” was declared. However, other cancers have shown a marked reduction in mortality, due to the availability of early detection tests and improved treatments. Unfortunately, this is not the case with ovarian cancer, which is still the deadliest of all gynecologic cancers.

Well ladies, I guess we have the wrong kind of cancer. Each human life is as important as the next. To us ovarian cancer is THE most important cancer. Are they saying that because only 14,000 of us are dying each year we don't merit more vigilent research?

I'll get off my soapbox now. It feels good to get things off my chest. I just wish our voices could be heard by a broader audience.

Everyone have a great day!

Luv,Karen