CA 125 result and ovarian cancer

[LL2006]

I recently had serial CA125 tests done (3in total) for vague symptoms (abnormal 12 day period, spotting after intercourse, very mild GI symptoms). I have a family hx of breast CA (mother,mat aunt,mat cousin, pat gm,pat aunt) & 1 mat aunt w/ovarian CA. My GP decided to do a CA125. The first rdg was 85, 3/12 later it was 97, 3/12 later (last wk) it is at 160. I was seen by an ob/gyn (first gyn visit in 24 yrs .. I'm 49 y.o.). She said I look healthy, not on any medications, and CA125 alone is not reliable. My transvaginal u/s showed 1 cyst on R ovary, 2 on L. Gyn said we'll repeat transvag. u/s in March 2007. I am quite patient and healthy with exception of GI symptoms increasing (could be my age :-).. How patient should I be? No other tests were ordered at this time, which my GP seems concerned about. Opinion?

[Annekathryn Goodman, M.D.]

Hi There,
I apologize about my delay in responding. I have alot of alarm bells going off about you. You have a strong family history of breast and ovarian cancer. You have an abnormally elevated CA 125. I would strongly encourage you to see a gynecologist or gynecologic oncologist for an opinion. My personal leaning would be to recommend a diagnostic laparoscopy.

The Ca 125 can be elevated with fibroids, inflammation, endometriosis. However, a laparoscopy will make the diagnosis. Should all be well at the time of laparoscopy, I would recommend that you consider getting gene tested for the BRCA 1 and 2 mutations. If you have one of those mutations, the risk of ovarian and breast cancers are very high. Women who have these gene mutations should strongly consider the surgical removal of their ovaries after they have completed their families.
take care

[OCFB]

Keep pushing.  You have a good deal of cancer in your family, enough, I would think for a CT scan to be ordered.  If I hadn't pushed for mine, I don't believe I would be here today.  Your age is in your favor, but only YOU know if something is not right in your own body.  Don't let your docs pooh-pooh your symptoms.  If you don't feel 'right' then push until someone responds.  Good luck.
Linda

[LL2006]

Thanks for your thoughtful comment Linda. I haven't followed this forum, so unsure of your hx. Sounds like all has gone well for you (relatively speaking). Just to clarify, my GP is  concerned that the specialist has not ordered more diagnostic tests. She's puzzled by the increasing values of CA125. I have an extremely caring, intelligent female GP. The specialist suggested we wait until March 2007 to see what the repeated transvaginal u/s reveals. My symptoms are vague, with exception of extremely painful periods (x 4/12). My last 2 paps came back as ASCUS (not too worrisome). I was recently dx'd with a mitral valve prolapse (w/regurgitation), otherwise I consider myself to be in good health (on no meds). I'm looking forward to hearing fr Dr.G. in this forum. She seems highly intelligent and most qualified in addressing pt's concerns. I'll see what she recommends or if I should just sit tight until March. You gave me good advice though Linda .. in listening to our own bodies. Thanks :-)

[OCFB]

You  might want to query your GP to see what she has in mind as far as further diagnostic testing.  She has been following you most closely whereas the specialist has only seen you once or twice.  The CA125 can be elevated for other reasons besides cancer.  You might want to read up on that subject.  Anyway, good luck.  Jump in on the support group discussions.  Lots of nice folks with a good deal of experience who are more than willing to help.
Linda

[LL2006]

I agree that this support group certainly has a great deal of experience. When my GP phoned me w/my last CA125 result (by coincidence the same day as I saw the ob/gyn in consult ..first visit)she asked if the specialist was considering a laparscopic diagnostic exam. The ob/gyn said that in the radiologist's opinion the 2cm cyst on the right ovary was hemorrhagic in nature (probably nothing to worry about), however, we would repeat the transvaginal u/s (at the hospital again) in March/07 and repeat paps every 3/12. On the req, the spec. note elevated (with an arrow)CA125 and underlined, so perhaps some consideration is given to this. I hate to question the expertise of a specialist, however, this ob/gyn is not a sub-specialist. I'm not one to ask for 2nd opinions. Quite frankly, with the exception of the cardiologist assessing the MVP, I've only been seen by specialists during my 2 pregnancies. I don't want to burn any bridges in the event I ever require this specialist's further care.  I'm torn!  I know my GP would gladly refer me to someone else. In fact, she even hinted at that suggestion.  Anxiously awaiting thoughts, anecdotes,advice from Dr.G.  Thank you so much Linda for your comments.  

[OCFB]

I think several of those on the support forum would suggest that you see a GYN oncologist...something you could mention to your GP.  Those of us with ovarian cancer (including myself) know it's better to be safe than sorry.  If everything turns out benign, you can mend fences later.  I've spent my entire 40 year career in academic medicine.  Not all docs are created equal, and they are not infallible.  A good one doesn't mind being challenged and most often welcomes input in a particulary pithy case.  Again, good luck and let me know how it goes.
Linda

[LL2006]

You are of the same opinion as my physician, Linda. Even when my GP decided serial CA125's would be appropriate for myself (incidentally the ob/gyn disagreed), she told me that the tests are not completely reliable, but that she'd rather have a false alarm than no alarm.  I respect her a great deal for taking that approach.  It comes as no surprise that you spent an academic career in medicine.  I have to agree that not all docs are created equal.  I'm with you on that one :-)!!  I am very sorry to hear that you are battling ovarian CA. I value your input and thank you for your concern. I'll stay in touch on this forum.  Incidentally, I too have a career in healthcare.

[OCFB]

I see that you have had a response from MGH.  Keep me in the loop on the support group page.  I will look for you, LL!  Happy Holidays!
Linda

[LL2006]

Happy Holidays Linda! I'll stay in touch on the forum.  I wish you all the best in the New Year :-)  I will be taking the  advice of Dr.G and yourself in seeking an opinion of a gynecological oncologist.  I'll make those arrangements early in the new year.

[LL2006]

...make that gynecologic oncologist.. I must be tired :-)  Incidentally Linda, were you treated at MGH?  I'm extremely impressed with everything I have learned through this forum.  In particular, Dr.G. is exactly the type of sub-specialist I would seek.

[OCFB]

No, I was treated at the Silvester Comprehensive Care Center which is a part of the University of Miami School of Medicine, here in So. Florida.  I worked at UMSM for about 20 years, so I had a number of contacts when I first became symptomatic.  Because I was able to get to the professionals I needed so quickly I had surgery within 2 weeks of my first symptoms.  The cyst I had was large and malignant, but remained intact until it was surgically removed (along with everything else).  Even though all biopsy (20) sites were clean, I opted for the 6 rounds of Taxotere and Carboplatin.  Finished that in July, 2004.  Everything has been normal since then.  I believe it is very important to get to specialists as quickly as is possible.  If my cyst had burst, the chances are I would have been seeded throughout my abdomen.  I am a very lucky woman.  Now, of course, my daugthers will have to be very, very watchful.  What's up with you?  (Let's switch over to the support forum.  Contact me there with my nickname "OCFB" which, incidentally means Over Cautious FussBudget!)
Linda