exams to catch recurrance

[Brassica]

I've been trying to post this one for the ovarian doctor forum for a week but even at 8am the site says its reached its daily limit.  Does anyone know if this is a glitch?  Or are the Qs that get answered submitted at 4am?

Here's my Q: I'm post-treatment for ovarian cancer and having regular exams (3 mo/6mo) to check for recurrance.  The thing is, the exams are just a conversation and a manual (human) exam plus a CA-125.  I know the CA-125 isn't reliable (it didn't show my cancer last time until it was well established).  Shouldn't I be getting some kind of scan on a regular basis?  They have me getting scans for breast cancer twice a year and I don't have any history of that.  I'm worried that if the ovarian cancer returns, it will be the same as last time: undetected for many months.  Thanks!
  

[Linda7247]

Hello-------------I am finally through the surgery and doing well.  Thank God no further cancer was found so I hope I am good for now.  I guess my doctor in Spokane, WA is on top of things and I have really good insurance, so the PET was covered at 100%.  I have not had my return visit yet, so I don't know what the follow up recommendation will be at this time, but I will keep you posted. I wish you well on your  testing and hope nothing will be found.  It's been a very scary 2 months.  I wish all of you out there could have found the cancer early as I did--I was very lucky and feel very blessed at this point.

[Brassica]

Thanks for all the rgeat help and comments all!  Linda, how in the world did you get them to do a PET scan with only 1c:2?  It's really hard to get them covered here unless the change of recurrance or blood markers are high.  

Based on all your helpfull comments, I got myself scheduled for a CT scan.  THANKS.

[Linda7247]

Hi--my doctor recommends a CA125 every 3 months and a CT every 6 months but only for 2 years. However, since the CA125 is not reliable, I am opting for surgical staging to be sure pathology rules out any remaining cancer.  My PET scan was clear, my CA 125 was normal, but I still had Stage 1c Grade 2 and don't feel good about unreliable testing.  I also don't want to take chemo if I don't need to.  Also, since my mother had breast cancer and I now had ovarian cancer, my doctor is recommending testing for the BRCA genes 1 and 2.  Good luck to you.
Linda

[Angie_Lou]

When my CA125 was rising (slightly) with every test, ironically, my gynonc gave me the choice (this Sept) if I wanted to go forward with a follow-up CT.  Needless to say, I would have preferred if my doctor just said, "let's do it" rather than leaving me with the decision to do it now or wait for the results on my next CA125 test & visit (scheduled in Nov.) This pretty much drained me emotionally, and left me to dwell (for only a week) on the possibility that a recurrence was in my near future.  After many tears on the phone with the nurses (I was so dazed & confused), and then with my doctor, she (my doctor) finally sensed, I did not want to wait three months.  (I posted a question re: Tamoxifen, which is presently, my prescribed treatment, based on the CT results.)

I believe you may not have rec'vd an answer to your basic question because, on a professional level, doctors cannot play against one another, especially, where health is concerned.  It's hard for one (doctor) to recommend a procedure (i.e. follow-up CT, etc) if a patient's doctor hasn't.  HOWEVER, if you feel it necessary to have some sort of follow-up, (STRONGLY) voice this to your physician or physician's nurse.  Between all the tears, I finally was able to say that I didn't want to wait on my life.  I think this is was what helped my doctor understand what I needed to be done at this stage in my fight.

RE: CEA.  This is a test I wasn't aware of and am certainly going to ask about it with my doctor.  Westajul; Thank you for mentioning this.

My best to all, Angie

[JC145]

I had the CEA run before surgery and it was slightly above normal ... considering how high the CA125 was.  I asked my GYN/ONC about rerunning it a long time ago, and his answer was that since I have cancer, all of the tumor markers would be up.  I may have to mention this again.  Judy

[westajul]

A CEA test is another test for cancer antigens in the blood stream.From what I have read CEA test is used as a marker for colon, ovarian, and liver cancer. My doctor recommended it because sometimes a CEA test results will be elevated sooner than the ca-125 tests in the early stages. In my case my ca-125 had increased but it went from 6 to 15 while my cea test went from 0.9 to 4.9. Now neither of these test results were alarming the percentage of increase on my CEA was what concerned my doctor. Check with your doctor and see if they can do a cea blood tests when they do you ca-125.I am not sure about how reliable is the CEA test...may not be more reliable than CA-125. Good luck. Julie

[Brassica]

What's a CEA test?

[westajul]

My Gyn Oncolohist had me having ct scans every 3months, ca-125 and CEA tests also every three months. Irecently had a recurrence. My Ca-125 was not elevated but my CEA was significanlty higher. Also the CT scan picked up a couple of spots in my liver. Thankfully there is very little disease and my prognosis is very good. I am not sure if in you case a CEA test would help but that was the only test that was significantly higher. I am sure my spots would have been noticed even if both tests were normal. Good lick Julie

[Brassica]

Thanks so much for these comments!  It gives me a clearer idea of general practices -- which is great.

[marie3B]

My ca125 is not a good indicator for me either.  I have a ca125 every 3 months and a CT scan every 6 months.  In between oncology visits I see a really good internal med doc. He does a thorough manual exam.  Other than that I don't think much else can be done.  I would ask your doctor for a scan stating that you can't rely on the ca125.  I wish you the best.  Marie

[jlock]

My Onc orders a ca-125 every 3 months along with a physical exam.  When my numbers begin to rise and once they have gone out of the normal zone,he then orders a ct or pet scan. Since I'n not very sensitive to my ca-125 he also takes into consideration how I feel. This current recurrence my ca-125 is normal,but I had 3650cc of ascites removed..and am now on Navelbine. If I happen to make it a year with low ca-125 then he does a yearly ct scan,just to be sure.  Good luck~~~Joanne

[vegas2cr]

It took me 4 days to post this question.. I am pasting here perhaps it will help..It is from a couple of weeks ago...I also had a radioablation after surgery...

was diagnosed with stage IV April of 07.  6 rounds of chemo and full debulking surgery leaves me feeling good at this point..Spots to my liver disappeared after chemo... Surgery was last September...Every month I have my ca 125 and in January of this year it was 6.0 and every month has climbed to now it is 13.9 but certainly normal range... I see my gynecological oncologist every 3 months and my oncologist and do a pelvic ultra sound and a transvaginal every 3 months..

This week gynecological oncologist wants MRI and radioactive bone scan.. I am self paying here in Costa Rica and although cheaper than United states not cheap.. My oncologist says this week actually the next day.... absolutely NOT.. you do not need those tests and don't do them...They are freinds so I tell her to call him..

My question is I have not had one scan since my optimal debulking surgery and my oncologist likes that.. I do not understand why they have a disagreement going here with me in the middle...She says again that my ca 125 is within normal range and those tests are a waste of money...So now what??? I am puzzled as to who to listen to.  

What is protocol for watchful waiting on ovarian cancer.. the internet is full of different theories.. Thanks for your help..
Ronni


by Annekathryn Goodman, M.D.


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Annekathryn Goodman, M.D.  
Female, 48 years
Boston - MA
Member since Jun 2006  



, Sep 14, 2008 04:07PM
Dear Ronni,

It sounds like you are doing so well.
Getting  CA 125 results can be very stressful.

With a stage 4 cancer, there is a high risk that it can recur.  The fact that it has not yet recurred in 18 months is awesome. It means you  have a platinum sensitive cancer.  There may come a point with your slowly rising CA 125, that it does become clear that you are experiencing a recurrence.

Your two good doctors are giving you two perfectly reasonable approaches. Their differing views reflect the dilemma we all have which is - how hard do we look for a recurrence if someone is feeling well?

The internet is full of different theories because there is no wrong answer. We do not know if it helps to find a recurrence earlier.  I would probably take a middle ground and set some value of the CA 125 at which I would want to look with xrays.  For instance say when it goes above 35.

You could ask your doctors to find a value beyond which they are no longer just watching you without further investigation.

best wishes
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