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Ovarian Cancer (Expert Forum)
Rising ca 125
Answered by
Annekathryn Goodman, M.D. - Gynecologic Cancers, Complex Gynecologic, Surgeries, Palliative Care, Acupuncture
Massachusetts General Hospital Cancer Center
Boston - MA
This forum is for questions and support regarding ovarian cancer issues, such as: Biopsy, Chemotherapy, Clinical Trials, Genetics, Hysterectomy,Immunotherapy, Ovarian Cancer Types, Radiation Therapy, Risk Factors, Screening, Staging, Surgery.
Rising ca 125
by Kathy444, Jun 21, 2008 07:36AM
Dear Dr. Goodman,
I posted this elsewhere on this forum, but I am delighted to see expert help is available.
My ca 125 is steadily rising, even though three cat scans over a year and a half are negative.
I recently jumped to 320 from 220 and a ct pet is scheduled for early next week.
I feel wonderful and my recent physicals are perfect.
How common are false positives? In other words, what percentage of people score high on followups to OC, without any cancer being present? My oncologist said about 15%. Does that sound about right to you?
If in fact, the ct pet shows nothing, should I discontinue ca 125 tests and just rely on cat scans?
Thanks for your advice.
Kathy
I posted this elsewhere on this forum, but I am delighted to see expert help is available.
My ca 125 is steadily rising, even though three cat scans over a year and a half are negative.
I recently jumped to 320 from 220 and a ct pet is scheduled for early next week.
I feel wonderful and my recent physicals are perfect.
How common are false positives? In other words, what percentage of people score high on followups to OC, without any cancer being present? My oncologist said about 15%. Does that sound about right to you?
If in fact, the ct pet shows nothing, should I discontinue ca 125 tests and just rely on cat scans?
Thanks for your advice.
Kathy
Doctor's Answer
by Annekathryn Goodman, M.D., Jun 30, 2008 08:43PM
, Jun 30, 2008 08:43PM
Dear Kathy,
what was your baseline CA 125 at diagnosis of ovarian cancer? Did it go down to normal after treatment?
You bring up a philosophical question, say that there were some ovarian cancer cells present but you are not sick from them. Should you have treatment? Or does it make sense to wait until you have symptoms from ovarian cancer?
This is a big point of debate among gyn oncologists. There is actually no data showing a survival advantage for starting chemo in women who are asymptomatic from an early recurrence.
Intuitively and psychologically, it is very hard to not treat a recurrence once you are sure that is what is going on. Tough issue.
April - what is the endpoint of your surveillance? You should ask your doctor if there is a role for consideration of the prophylactic removal of the ovaries and tubes if you are truly at high risk for the development of ovarian cancer.
Unfortunately, there is no accurate screening test fro ovarian cancer. we do not have a way of identifying a precancerous change on the ovaries or an early cancer and then intervening and curing the cancer. So the current standard of care is to recommend risk reduction surgery (removal of ovaries and tubes) in women identified as being at high risk for ovarian cancer
best wishes
what was your baseline CA 125 at diagnosis of ovarian cancer? Did it go down to normal after treatment?
You bring up a philosophical question, say that there were some ovarian cancer cells present but you are not sick from them. Should you have treatment? Or does it make sense to wait until you have symptoms from ovarian cancer?
This is a big point of debate among gyn oncologists. There is actually no data showing a survival advantage for starting chemo in women who are asymptomatic from an early recurrence.
Intuitively and psychologically, it is very hard to not treat a recurrence once you are sure that is what is going on. Tough issue.
April - what is the endpoint of your surveillance? You should ask your doctor if there is a role for consideration of the prophylactic removal of the ovaries and tubes if you are truly at high risk for the development of ovarian cancer.
Unfortunately, there is no accurate screening test fro ovarian cancer. we do not have a way of identifying a precancerous change on the ovaries or an early cancer and then intervening and curing the cancer. So the current standard of care is to recommend risk reduction surgery (removal of ovaries and tubes) in women identified as being at high risk for ovarian cancer
best wishes
We are in a similar situation. Because my mom died of breast cancer at age 68 and I told my doctor that my paternal grandmother died of ovarian cancer at age 87 (later found out it was stomach cancer), he said it would be wise for me to have the CA-125. I had the first one six months ago and it was 54. So, I underwent an ultrasound and CT scan. The only things detected were a 17 mm mass on my right ovary and bilateral kidney stones. The mass was found on the CT scan, but not seen on the ultrasound. My doctor said it was most likely a functional cyst, which I've had before.
Anyhow, the recommendation was that I be retested every 6 months. My latest result was 66. My doctor wanted me to have an ultrasound, so I had a regular ultrasound and a transvaginal ultrasound over the weekend. Both came back normal and my doctor said both my uterus and ovaries looked great. I really don't know what to think now. Do I insist on further testing, or not worry about it. I, too, feel completely fine and have had excellent results from my physicals.
Take care,
April
Today is the CT Pet scan. My numbers have always been up since they originally came down to about 20 with the initial chemo.
When I had surgery my ca 125 was at 400.
April, I use mind power all the time, I see myself in perfect health, I juice an entire colander of vegetables everyday. I take 20 whole food supplements each day, designed by a cancer nutritionist.
I have done everything I could, to help myself live. In the end, you just have to let go, and surrender to God's will, but still keep seeing yourself whole.
The ca 125 test is an unreliable test at best. There are women filled with cancer who can have a normal ca 125, and women who do not have any cancer , but an infection somewhere in the body, that have high numbers. My doctor dislikes the test and says it is an unpredictable, stress inducing test.
If there's a question about what to do, or how long we will survive, with or without early interevention, then why put us through these tests at all?
My general Practioner says "ohhhh, allll that radiation!! Hm, hm, hm." from the tests. Thanks doctor. :-)
Anyway, while I was recovering, and speaking to a couple I know, saying how I was going to beat my cancer for a second time, and the fellow scoffed at me and said, "Oh, sure, you've had cancer twice and you're going to be fine", buying into the theory that what you believe has nothing to do with how long you survive.
Ps: Last year he contracted septisosis, and died within three days. Did his pessimistic attitude about chances for survival affect his own survival? You bet it did.
There are more factors than just your medical diagnosis. There are spiritual factors like beliefs in miracles, mind power that you are going to be just fine, no matter what, and belief in a loving and merciful God.
You are not just your body. God can step in and make you whole. Every night I say the healing phrases from the "Power of the Subconscious Mind" by Joseph Murphy.
That is how those people who went into total remission did it, with the power of their mind. The doctors cannot explain how that happens, but it does. Someone has to go into total remission, might as well be you and I. Read Lance Armstrong's book, "It's not about the Bike". He says, "No matter what my doctors say, I Knew I was going to live".
Good luck April to both of us.
Thank you Doctor Goodman. I love my doctors, and credit them with saving my life. But, there comes a point when they can't do anymore. Then, God steps in.
I believe I Will Live.
Kathy
Thank you so much for all you shared. I saw that you have your PET scan today. First of all, know that I will be praying for you. God is so merciful and good. I know He will be watching closely over you. Please let us all know what the results are when you hear.
Take care!
April
I will do as you suggest and ask my doctor why he wants to continue to monitor my CA-125 levels. I will also ask him about the removal of my ovaries and tubes and whether or not he feels there is justification for that at this time.
What are the other reasons that CA-125 levels might increase in a woman such as myself who has not ever been diagnosed with cancer and presents no symptoms?
Thanks,
April
He said there is a lymph node showing activity behind my abdomen, but the spot is so small they cannot be sure what it is. he said it might be an inflamation, and that perhaps the lymph node is just doing it's job. There is also activity in one of the arteries or veins ( I started to fog up at that point, I was just really glad he wasn't say the C word!) but again, it'll be a wait and see thing.
So................................3 months from now I'll have another pet scan and ca 125 and then if they are still rising and the spot is growing, we'll go to chemo.
All I can say is thank God we have this kind of technology! They are really on top of this.
Thanks to both of you for all your input.
I'll sleep tonight.
Kathy
thank you for sharing so much of yourself here. I know that your thoughts will help guide other people who are struggling with similar issues. Hope is a huge and important generator of life force. that is for sure. Please let us know how you are doing.
April
It is an unreliable test as Kathy says.
In premenopausal women it can be elevated with
fibroid
endometriosis
infection
inflammation
in all age groups it can be elevated with
heart failure
pneumonia
cirrhosis of the liver
diverticulitis
best wishes
Hi all,
This evening thanks to some very compassionate nurses who called the lab, my new July 08 ca 125 results are in.
The great news is my ca 125 numbers have dropped 60 points! This is pretty miraculous because my fuv uptake numbers on the microscopic mass was a 6 which is a pretty high uptake for such a minute area.
Now, according to my oncologist it looks pretty favorable for it to be a lymph node, "doing it's job" instead of the dreaded possible recurrence. More like an inflammation