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Posts: 1995
Joined: May 2003

Does anyone out there know what one would look for in terms of symptoms to know if the cancer has returned? Had totally hysterctomy, omentum, lymph node removal in 2000, found stage 1C ovarian, 6 months of chemo. So far I'm cancer free but have experienced some abdominal discomfort. Also have a little discomfort in the glands around my neck, yet no swelling. My doctor told me that because the ovary ruptured during removal, he would be concerned about peritoneal cancer. Any particular symptomology on that? I'm headed for a CT and chest x-ray next week, as well as bloodwork which I get monthly. CA125 is usually 14-17, but has been 20 that last few months, which I know is still in the normal range.

Would really appreciate any insight on this. Thank you so much!

Posts: 19
Joined: May 2001

Hello there, I don't want to frighten you, but I will be worried if my CA125 goes up from 14-17 to 20. I was diagnosed in May 2001, stage 3. I know my chances of a recurrence is very high, so I have done a lot of research on diet, supplements and exercise. I truly believe that improving my immune system is the way to prevent a recurrence. Or improve the time of survivor. I have increased my intake of fruits and vegetables. I have lost a few pounds. I exercise regularly, usually for a bout 45 mins on a treadmill. I practice Qigong for 25 mins. everyday. I take about 10 different kinds of supplements - I rotate them, as I believe variety is better than quantity. I wish you all the best with your CT scan and Chest x-ray. Before then, I suggest that you read "A woman's guide to healing from breast cancer" by Nan Lu, A healer within by Roger Jahnke, Beating cancer with nutrition by Patrick Quinlin and Spontaneous Healing by Dr. Andrew Weil. I believe we can do a lot to help ourselves. As for qigong, check out Chilel.com. I am so glad I found it in Sep. last year. After just one week, my fatigue was gone. You can read my story here: http://www.cancerstory.com/servlets/story_jorevised.jsp (or type cancerstory on google, then click on stories) Another person who has a lot of ideas on nutrition is Sirensong - you do a search on Hystersisters.com. Take care, Joanna

Posts: 650
Joined: Mar 2003

Hi mopar, I was dx with 1C Ovarian and 1B uterine cancers in Sept. 02, and have spent a good deal of time reading about the disease(s) since then. (They're not related-I was dx with uterine, and the ovarian was discovered when I had the hysterectomy.)

Johns Hopkins has one of the best sites for almost any disorder I've heard of, and what it says about CA125 tests is what I've seen in many books and websites:

How accurate is a CA-125 test for ovarian cancer?

The CA-125 test only returns a true positive result for about 50% of Stage I ovarian cancer patients. The CA-125 test is not an adequate early detection tool when used alone.

The CA-125 test has an 80% chance of returning true positive results from stage II, III, and IV ovarian cancer patients. The other 20% of ovarian cancer patients do not show any increase in CA-125 concentrations.

However several women's reproductive disorders can cause a false positive result. Endometriosis, benign ovarian cysts, first trimester of pregnancy, and pelvic inflammatory disease all produce higher levels of CA-125.

70% of people with cirrhosis, 60% of people with pancreatic cancer, and 20%-25% of people with other malignancies have elevated levels of CA-125.
from: http://ovariancancer.jhmi.edu/ca125qa.cfm#accuracy

This is why it's not recommended as an annual test for women-it can give positive readings for many things, and is not a sure thing for OVCA, especially Stage 1. The first posting I made to this board was to inquire about CA125 levels-I was having trouble finding information, and my doctors kept saying that it was not a good indicator.

"Gilda's Disease" by Steven Piver, MD is the best overall book I've read regarding OVCA, including possible causes and treatments, and has the clearest explanations of staging and just how chemotherapy works, and why its important to have a gynecological oncologist do the surgery and staging.

Most of what I've read about recurrence symptoms is not of any hard and fast indicators, because it is so important to be watched for the small indicators of recurrence, and appropriate testing be done if there are.

My CA125 has risen from 14 to 19, and you can bet I'm watching everything as well as I can!

Nutrition and weight are important, of course. One of the first things I did after I got through chemo was to go back to Weight Watchers. I'm down about 25 lbs. now, with approval from all the doctors. I don't take any herbal supplements-everything I've been advised as to being a good thing to use has proven to be not something I can use because I take blood thinners.

I know you're a frequent visitor here-please check back and let us know how you did with your CT and x-ray, and I wish you the best of luck!

Posts: 1
Joined: May 2002

Hi,I wish I had the answer for you too..I had a very rare form of an ovarian tumor discovered by chance 5 and a half years ago. My CA-125 was totally normal and I had no traditional symptoms at all.I get a pelvic ultrasound every 6 months and pray there is no recurrence. My story is (as all are) a long one and a complicated one.
I hope you can get an transvaginal pelvic ultrasound as one means of detection. I have heard about a new blood test as an ovarian tumor marker..Hope to chat soon.

Posts: 1995
Joined: May 2003

Thank you to all of you who responded to my question. As of today, my CA125 has gone down from 20.1 to 16.1. My CT scan (abdomen, pelvis) and chest X-ray all appear to be normal. Though I still have some major questions and slight discomfort, I will address those when I see my doctor in December. Until then, I THINK I can breath a LITTLE easier for now. Of course, I always look to my appointment and exam as the icing on the cake.

Having always been a 'health nut', I also look to several sources for my continued remission. I exercise (resistance training and cardiovascular), as well as take certain supplemnts in addition to those I've taken for the last 30 years. For me, stress is one of my markers that tells me to 'slow down'. Of course, with three children and a disabled husband, slowing down isn't always an option. So when I know i'm on the edge I try to back off a little and restructure my priorities for the day/week. Although my daughters are very helpful, I do have the bulk of the responsibilities. So between diet, exercise and prayer, I guess I maintain.

Thank you for your reading material references. I will try to look those up. And to all of you, my thoughts and prayers are with you. I am hoping for a peaceful and healthy holiday. Once I get confirmation from my doctor, I will be more at ease. Until then I remember one particular scripture that puts things in perspective: "Sufficient is the moment!"

Posts: 650
Joined: Mar 2003

I'm so glad to hear you've gotten a good report! It sounds like you're doing everything you can to stay healthy, too. That's the best thing you can do.

Posts: 8
Joined: May 2003

Its great to know you are doing so well. Have a wonderful holiday.

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