about CA 125

[connie146]

Recently I had a cyst and fallopian tube removed my CA 125 was high before I went in (around 168) and after a few weeks it went down to around 69.  I have had many tests and my biopsy came back clear on the cyst.  I have had CT, MRI pelvic ultrasound and D&C.  The issue is although I am no longer bleeding non stop (for months at a time) I am still having terrible cramping/pressure/sudden stabbing pain in my lower abdomen..........my Ob/gyn told me she had never had someone's CA 125 go up after sugery.  So my gp sought out another ob/gyn who said this is normal and common.  She wants to induce (the new ob/gyn menopause with Lupron Depot and try that for three months.  Why not a hysterectomy, this is being going on for two years = pain and heavy long term bleeding.  I must admit after surgery I have normal periods but still so much pain
MYquestion is due ot pain and absoultely severe (almost to the point of fear something is really really wrong- and trips to the hospital for pain relief) should I not be checked again with laproscopy?   Intially my ob/gyn told me she was taking both ovaries, but I still have them............she said she decided during surgery to only take the tube and cyst.  My GP was shocked as she forwarded me the papers to sign to take both ovaries and possibly to a full hysterectomy and then to discover that she only did the fallopian tube and ovary.  I am till not convinced ( I am listening and knowing something is wrong) that I don't need different treatment.  Is the hormone Lupron the way to go?  It makes me wonder what will happen when I come off and three months start periods again and face apin.
Also should I not have my CA125 levels checked = they are now at 69.  I can only describe my pain as the worst cramps ever, pressure, pelvic pain into thighs, sometimes sharp pain and always discomfort.  Any help would so be appreciated.  I want to have faith and do not want to make a decision based on a 5 minute appt.  I changed ob/gyn when my Dr. (GP) expressed concern about the fact that I didn't have my ovaries removed.  He has said numerous time he  would feel better knowing that they were gone.
I am 44 years old, for the last several years the bleeding has almost been non-stop, now I have almost regular periods but long and painful.  I have only about a week semi relief from pain after my period stops.  I finally caved and am using oxycodone with caution and only during the worst pain.  I am exhausted and feel that my intuition says I am honestly experiencing something more then just "bad" periods.  
I am tired of taking so much time away from friends, family and work to cope with just gething through the pain.
My husband has said that he has seen my go through a major (on life support and long long recovery with manyl lingering problems- broken sternum, breast reconstruction, infection behind sternum, broken femer, and more- he feels he has never seen me in as much pain as now.
I am trying to eat carefully and lose weight I am about 40 lbs overweight, but when I ask over and over again if this could be the main cause, I am told no.  The laproscopy only showed the ovary twisted round the fallopian tube. No endometriosis ( but my GP wondered if she had really looked????)  He feels the report doesn't clarify that.
BTW- I have had tubal ligation, other cysts and have hystery of endometriosis . I need to make the decision re:
wait and see or demand more exploratory surgery or try the induced menopause. Also even though the latest ob/gyn says don't worry about the CA 125 being checked again, should i check it till it is normal???
Thank you for any help

[connie146]

Thank you so much for answering Angie.......I  will consider all those factors when and if I have the CA 125 checked again.  Also- I am thinking about waiting one more month for a more thought out educated decision about the hormonal situatuion.
I also wish you the best and that you have optimum care.
Take Care,
Connie.

[Angie_Lou]

Wow, Connie..I just don't know what to say about all that you've been through.

I did not have excruciating pains, but, I had other symptoms leading me to a Dr's office, which (after a transvaginal ultrasound & CT), indicated the suspicion of OVCA.  OCVA was then confirmed by the pathology report after my hysterectomy.  I will add; The surgery was performed by the gyn-oncologist.

So, please don't fear or think that you have cancer.  With your history of cysts and endometriosis, I believe these conditions do affect a CA125 level, with a slight increase just above the "normal" level, such as in your case.  Even menstruation/ovulation can affect the test, depending if the test was taken while menstruating or ovulating.

So, if you feel you need to have the test taken again, make sure the time of the month in your cycle is the same as when the last test was taken to rule menstruation/ovulation out if there are changes in the level.  And, think; did you have any known cysts at the time the last test was taken? Again, these are all factors for the levels to increase slightly, not extremely, but slightly.

If you haven't posted on the Ovarian Cysts forum, you may want to take a look.  I believe there are probably other women with cyst & endometriosis history that you can compare notes with.

As far as inducing menopause, well, I think this is a personal decision to make. But, I highly suggest researching the type(s) of hormonal drugs your doctor is recommending before you decide.  Anytime one changes the hormonal balance of ones body, it can change a lot of things.

Good luck and I do hope your pains subside.
My best, Angie