Silent but Deadly

One of the things you do when you receive a Stage IV diagnosis is second guess yourself.  You constantly try to think if you missed a symptom, a sign, something, ANYthing that if you had paid more attention to it, you might have been diagnosed sooner.  Ovarian cancer is particularly insidious in that the symptoms could be anything...bloating?  Shoot - what woman hasn't bloated on a regular basis since the onset of puberty?  Constipation?  Really?  A sense of fullness?  Changes in your cycle?

These are not the things that worry a woman - we don't have time to let a little bloating or irregular bowel habits slow us down.  And often ovarian cancer hits in our later years - when changes in our cycle and weight gain that doesn't respond well to exercise is part of the change coming on.  And again - while we don't *like* it, if you're over 45, you just assume it's the change.  It never occurred to me that it might be ovarian cancer until it was too late.

Over the year before my diagnosis, I had a vague sense that my cycles were coming a little too close together.  But I had just had my IUD removed, and figured that was why.  I had gained weight, and it wasn't until I had been exercising regularly for 9 months without losing any before I started to think it might be something worrisome.  9 months folks.  And honestly, it wasn't until I started gaining weight that I took it seriously.  That and the fact I was getting short of breath going up stairs at work, even though I had quit smoking a year before. And let's not forget - my grandmother died from this disease - in her early 50s.  One of her sisters had it as well when she was much older.  I had a family history.  Yet it took unexplained weight gain and shortness of breath to get me to a doctor.  

I was 47 years old.  That's actually considered a bit young for ovarian cancer.  How long would I have waited to go to the doctor if I were 50?  Or 55?  or 60? 

There is no way to accurately screen for ovarian cancer currently.  For my diagnosis, it took a transvaginal ultrasound, an elevated CA-125 test of 220, and running a biopsy on the fluid they drained from my abdomen as it built up.  But you don't want to get to the stage where fluid is building up in your abdomen before being diagnosed.  You want to catch it before it gets to that point, and they are still looking for ways to do that.  The CA-125 has not been shown to be a reliable indicator of the presence of ovarian cancer, and transvaginal ultrasounds can see some irregularities, but ovarian cancer is not always obvious.  The only way they can truly diagnose it is through surgery.

When I had my IUD removed in the summer of 2011, I had a transvaginal ultrasound done. When I was diagnosed in 2012, 14 months later, my new GYN pulled that report from 2011.  The radiologist noted irregularities on my left ovary, and recommended follow up.  My former GYN never mentioned that to me.  It was not followed up on.  I was only 46 at the time, seemed perfectly healthy, and my family history was on my father's side of the family.

I cannot help but think that if we had done a CA 125 then, and did another one 3 months later, I would have been diagnosed much earlier, and would not have been stage IV.  Stage II - maybe even as lucky as Stage I.  I wouldn't have had tumors on my omentum requiring its removal, or on my diaphram, which was probably how fluid crossed from my abdomen to the areas around my lungs.  That knowledge haunts me late at night sometimes - when I let doubt and worry in.  I try not to dwell on it, but it never goes away.  Not completely, it's always there, and always will be.

So - if you are reading this and you have any of the symptoms mentioned above - consider going to see your doctor.  Even if he tells you that you're being silly - I'd rather be silly than have cancer.  So go.  Learn from the mistakes that were made by my and that other GYN.  Don't ignore your body.  Listen to it.  It might save your life.