thank you all for your wonderful comments.I agree and resonate with everything you are saying.
First to address sklucky:
Sjorgren's syndrome and intestinal disorders can cause elevated CA 125 protein secretion. The levels in the thousands without radiologic signs of cancer does make me wonder whether there is another reason for the excess protein levels in the blood.
It may be that a laparoscopy to look will be the only way to quickly answer the question, has the cancer come back.
Now the dilemma of a rising CA 125 level in a woman with known ovarian cancer who is asymptomatic and has a normal scan:
there was an abstract at the 2008 International Gyn Cancer society meeting in Bangkok that reported on women with ovarian cancer after primary treatment. They followed women either by clinical exam alone or by CA 125 levels. Treatment for recurrence was started based on CA 125 or exam / xray findings in the respective groups. There was no difference in survival
Interestingly, I just did a quick pubmed search. I may have missed it but I do not see that this data has been published yet now 2 years after presentation. (I am always a bit suspicious of data that does not get published ).
This abstract caused quite a stir and many oncologists got on the bandwagon of stopping CA 125 checks and being - well- a bit more nihilistic about intervention for recurrent ovarian cancer.
I agree with Pat 4444. That intuitively does not make sense. But there is no good data either way.
What I would say is now known and more and more information is coming on this - is that what we call ovarian cancer is not just one disease. Even for those cancers that look the same under the microscope (example: grade 3 serous papillary adenocarcinoma), there are porbbaly many different diseases based on molecular profile.
This new understanding ,of course, correlates with what we have known clinically for decades: that there is a wide range of behavior to cancers that grossly and microscopically look the same. Some women have recurrences within months of finishing chemo.others go ten years.Some have recurrences only in one spot, others have recurrences everywhere.and so on.
So with such a diverse disease, I find it hard to make a blanket statement about how we should follow women with a history of cancer and how we should treat recurrences. How I am going to mange my lovely patients in their 80s with a recurrence is totally different than my patients less than 80. Or someone with no health problems who could tolerate chemo versus someone in renal failure.
So I would continue to check CA 125 levels in patients where it makes sense to aggressively treat and treat early for a recurrence.
I am waiting for the doctor to reply to your question, I cant seem to get on here quick enough to post something since there is a limit to how many posts can be put up her daily. My mom also recently had a rise in her CA level from 13 to 305 and the CT showed nothing. I am assuming there is cancer there but not large enough to show up on a CT since these scans only seem to pick up 1cm tumors or larger. Its scary...she is going to see her oncologist next Friday - hope to get answers. We were told her would probably do one of 3 things, chemo, surgery or just wait - im not agreeing at all with waiting. Obviously with the rise in CA after being normal since Nov 09 - something is going on.
Good luck and I hope you get answers soon - the waiting is frustrating and scary
Recent studies have shown no improvement in mortality by treating rising CA 125 without other evidence such as symptoms or CAT scan findings. My wife's oncologist, who is top notch, has asked my wife to get another CAT in 2 mos. She also feels exploratory surgey at this point without evidence of cancer would be like trying to find find a needle in a haystack. She feels the CA 125 can be too anxiety provoking and doesn't want to retest until CAT scan. Bottom line -no chemo or surgery at this point- watchful waiting.
Thanx for your input.
Yes, nerve wrecking waiting - moms galbladder test showed the flow was normal except in one part which is kinda worrisome. More to come when she see's the onocologist at Rush on Friday. I have heard about Doctors that do not want to treat rising CA levels until there is actual proof there is cancer on the CT - but in my eyes, that is just waiting and giving this stuff time to grow anywhere in the meantime. Upsetting to me..... -
You both are in my prayers. Keep me posted, I check this site often
Would love to hear your mom's Dr's take on significantly increasing CA 125 without symptoms or evidence on CAT scan. My wife's Dr. says to wait for evidence before treatment.
My prayers are with your mom.
Keep us posted. I am leary of basing a decision about restarting treatment based on ONE STUDY. My daugter and son in law are epidemiologists/statiticians and say one study is not sufficient to make a decision not to treat rising ca 125's while the bulk of tumor is low. THey reviewed that study for me and it confirmed their opinion. They were surprised Docs were changing recommendations based on that.
What we need is a replication of that study with controls for subsequent treatment. THere were none in the original study. THe problem with a study with big numbers of people is that everything is significant.
So I am going with my intuition which is that the earlier treatment starts the better. Zap the cells before they start making masses.
We went to see the doctor last friday and because of her rise in her CA and her abdominal pains and being tired all the time, they are looking at this as a reoccurence even though the scan did not show anything. Like you doctor said, surgery wasnt really the way to go since nothing was visible on the scan and the pain and recovery time with that is at least 4 weeks and even if they did find something, it doesnt mean they can do anything surgically. Also, they didnt want to wait around for the CA to go up. My mom's CA has been consistent for her with her treatments in the past, which is not the case with all of the women on this site. Chemo starts tomorrow, Taxol, Carbo and Avastin. She had 5 rounds of the Carbo Taxol after the first surgery (because the surgery was unsuccessful, they needed to shrink things down to take out the female organs) and it worked. After the full hysterectomy (2nd surgery) she had 3 more rounds of the Carbo/Taxol and Avastin which brought her CA levels down to 13 since November of last year (until now). They are going to use the same treatment because they are considering her Carbo Sensitive since she did have almost an 7 month remission.
Any more news on your wife and what the docs are going to do? I just dont like the fact that they are doing nothing with a rising CA level, I would not agree with that if that is what they chose for my mom - I know they know best and they are the doctors, but I am not going to wait for something to grow large enough to be seen on a scan
She could get a PET/CT Scan. I know a few women whose dr.'s will order this if there is a question. It's expensive and it seems many dr.s won't order.