Stage 3c ovarian cancer recurrence

My sister was diagnosed with ovarian cancer (caused by BRCA1 mutation) in stage 3c more than a year ago. Her CA125 had been under 10 after the surgery and chemo. But it started to clime up in the recent tests. It reached 30 in the most recent test. Her doctor does not intend to do anything since it is still in the normal range. She is very nervous worrying that the cancer is coming back. What is the right action to take at this point?

[marie3B]

I would push the doctor to look into it further.  It could be elevated for any number of reasons, but who would want to take a chance with something as serious as ovca?? Not me. My doc says a trend of 3 elevated tests increasing, even if only a few points, is a sign of a possible recurrence. She checked my CA125 monthly for a year before finding CA125s were not useful for me.  Has she had a scan recently?  I would want one.  I don't know how easy it would be for her to switch docs, but it was easy for me.  My first oncologist seemed disinterested in me so I switched and have been receiving better care.  I hope all is okay and wish her the best.  Marie

[gah_70]

I agree with Marie.  Since she is BRCA 1+, that would lead one to assume her cancer may be estrogen related.  Do you know if her cancer was tested for estrogen receptors?  If not, then she should ask for that to be done.  If her current medical facility does not do that, she can have the slides sent somewhere that will.  If it does come back that her cancer is estrogen receptor positive, then that changes the way it should be treated.  She also needs to know if it is high grade (aggressive) or low grade (grows slowly).  That also makes a difference in how it is treated.  Chemo will not work on low grade cancers (I had 11 months of unnecessary chemo before I found this out).  It almost sounds as if her current physician is taking the watch and wait approach, so as Marie said, I would seek out another physician who is proactive about her care.  

Best wishes to you both.

Gail  

[MySHope]

Marie/Gail:

Thank you both so much for your comments. Marie, can you explain it a little more why CA125 is not useful for some patients? I would like to find out if it is useful for my sister. She did mention that she is going to have some sort of CT scan soon, but I am not sure exactly what. Since she is in China, it's not so easy for her to change a doctor. Gail, would you let me know the test name for finding out if the cancer is estrogen related? I have never heard her mention anything like that. She probably doesn't know if her cancer is high grade or low grade either. The information is new to me too. I would definitely like to learn more information about ovca so that I can help her more. Thank you both again!

[marie3B]

Different tumor types don't elevate the CA125 results.  At the time I was diagnosed I was full of tumors and still had a low CA125.   At the time of my first recurrence mine was around 3.  I have mucinous cystadenocarcinoma.  The CEA tumor marker is more helpful to me.  C19-9s are good for some tumor types. I would guess, since I am no where near being a doc, that because her numbers have gone from 10 to 30 that the test is of value to her.  That does not mean all elevations indicate recurrence.  It could be for other reasons. CA125 seems to be very useful in the majority of ovca patients. Please come here any time with any question or just to talk.  This group has done so much for me and we are all here for you and your sister.  Marie