CA125

Wednesday February 3, 1993

I slept fitfully taking Tylenol every 3-1/2 hours all night. After my shower I feel sick and terrible with chills. I crawl back into bed for 40 minutes. Frank brings me medicine, toast and orange juice. Finally, I'm ready to go to the doctor about 9:20. I feel a little better but lay down all the way to Hollywood. They check my blood and I get my new medicine. We come right home and I go to bed. When I awake an hour later I feel some better. I come down at 1 p.m. and eat sardines and crackers.

My CA125 blood test was 1260 3 weeks ago. Normal is 30 or less. It measures cancer but not considered too reliable. This is really bad. The worst I had before was 600.

I feel pretty good at 7:00. We pick up Gary and go out for a burrito. We find Marty and Kathy there. Maria has a bad cold. Gary takes food home to her. We had a good time.

I did a little research on the blood test CA125. It actually is used to monitor ovarian cancer patients to see how well their treatment is working. But is is not a good screening test to detect ovarian cancer. MedicineNet.com says, "Some women with ovarian cancer (up to 20%) never have elevated CA 125 levels, while most women who do have elevated CA 125 levels do not have cancer. In fact, because CA 125 can be elevated in so many non-cancerous conditions, only about 3% of women with elevated CA 125 levels have ovarian cancer." Even today 20 years later there is no screening test for ovarian cancer.

Ovariancanada.org lists the most common warning symptoms of ovarian cancer:

Swelling or bloating of the abdomen
Pelvic discomfort or heaviness
Back or abdominal pain
Fatigue
Gas, nausea, indigestion
Change in bowel habits
Emptying your bladder frequently
Menstrual irregularities
Weight loss or weight gain
Mass or "lump" in your pelvis that you can feel
Inability to eat normally
Pain with intercourse
Vaginal bleeding

Home At Last

Saturday October 12, 1991

It's 6 a.m. and they are waking Bea to weigh her. I can't believe it! We manage to go back to sleep til 7 a.m. I'm up getting cleaned up and ready to go home. I'm so hungry by 9 a.m. when they finally bring me bacon and eggs I can hardly eat it without throwing up. It takes awhile to eat it.

The doctor and nurses are all very impressed with how I have done. My temp is 98.6 and my blood pressure has returned to normal. My bowels are working fine and I am walking with some vigor.

I have enjoyed the 7 flower arrangements and many cards and phone calls. I have enjoyed all 4 of my roommates and most of my nurses. All in all it has been an interesting 5 days and 5 nights, but I'm eager to get into the wheelchair and head home.

Once home I go straight to the shower and wash my hair and curl it and make up my eyes and dress. Doris and Helen come over with a plant. Another arrives from Dee and Steve.

Frank and I decide where to place all the flowers and I take up residence on the blue recliner chair. Frank fixes us a nice lunch and dinner and we receive a few phone calls.

My main concern is the vaginal bleeding. The doctor did not tell me what to expect. There seems like alot and it didn't start until yesterday. Where is it coming from? Didn't he stitch me closed inside?

I still have about 100 small cancers all over inside my body cavity, but Dr. Bienstock seemed to think 3 more chemos should finish them off. The big problems is how will they know? How will they know if they return? The CAT scan didn't show small ones and the CA125 blood test didn't detect them. Will he have to open me up every 6-12 months to look for cancers? I will never feel so confident with good CAT and 125 after this. Still, I have much to be grateful for and I truly am. I am as optimistic as ever and look forward to a long and beautiful future with my wonderful Frank.

I believe I must work a little harder to achieve a complete recovery. I got lazy and cocky. I will talk to God more and visualize again. I'll use self-hypnosis or whatever I can think of. My positive thinking has never waivered and that's good, but not enough. But, at least, it seems the doctors actually believe for the first time that 3 more should do it.

While I can understand Mom's excitement at being able to shower and wash her hair after 5 days, is it really necessary to put on makeup and curl her hair? I remember when Mom visited the day I came home from the hospital after my C-section with my first child in 1981, I was in bed in my nightgown, and she insisted that I get dressed. I have to admit that I felt better about myself afterwards, so maybe she was on to something.

It is disturbing to know that the CAT scan did not show 100 or so tumors. I know PET scans show more detail, and perhaps CAT scan technology has improved in the last 20 years.

CA125

Thursday May 23, 1991

Lost one pound, though I don't deserve it. I've picked up some bad habits I must break.

Frank took me to see Dr. Bienstock and Dr. Bix this morning. Dr. Bienstock examined me. Said he could feel one tumor.

Dr. Bix had good news from my blood test. CA125 which measures cancer cells was 260 when I entered hospital April 9. Today it was 24 (normal is 22). That's great! White cell (immune) count was good; nothing to worry about. I must stay out of the sun, wear sunblock and a hat! So goest Hawaiian tan I planned.

Neither doctor is pleased that I threw up after chemo. I should have started anti-nausea drug earlier and continue 2 days. Or try new drug.

Had nice lunch out. Shopped our way home. Tired but happy. Called everyone to share the good news about CA125.

CA 125 is a protein, and a tumor marker or biomarker. CA 125 is present in greater concentration in ovarian cancer cells than in other cells. CA stands for cancer antigen. Increases in CA 125 can also occur with malignant tumors of the Fallopian tubes, lining of the uterus, lung, breast, and gastrointestinal track. Benign conditions such as infections of the abdomen, chest, menstruation, pregnancy, endometriosis, benign tumors of the ovaries, and liver disease can also raise CA 125.

Although CA 125 is a useful test in monitoring women who are being treated for ovarian cancer, a single CA 125 test is not considered to be a useful screening test for cancer. Some women with ovarian cancer (up to 20%) never have elevated CA 125 levels, while most women who do have elevated CA 125 levels do not have cancer. In fact, because CA 125 can be elevated in so many non-cancerous conditions, only about 3% of women with elevated CA 125 levels have ovarian cancer. I recently attended a seminar at Kaiser Permanente regarding genetic testing for breast and ovarian cancer and was disappointed to learn that there is still no screening test available for ovarian cancer almost 20 years later. Once a woman has ovarian cancer there are no symptoms until the cancer is very advanced and probably life-threatening. That is why this type of cancer is so deadly.