This phrase describes my life more frequently as I age.  The most recent example happened this morning on FB.

I’ve been trying to raise awareness about ovarian cancer (ovca).  Last night I wrote a post about the CA125 blood test and pelvic ultrasound.  These are usually the 1st 2 tests done to diagnose ovca.  In the post I advised women to insist on these tests if they felt symptoms, and boy – did I get blasted!

The two women who chided me essentially said this:  These tests are not definitive, and false negatives can be deadly as they give the impression it is ok for testing to stop.

My response was yes, this is 100% true, there is no definitive test for the disease, short of surgery and removal of cancerous growths/tissues.  However, this is the case for most diseases.  Mammograms often lead to false results, yet they are still viewed as the gold standard for diagnosis of breast cancer.  We have to start somewhere, and I know of no surgeon who will start with surgery so…..

Again, I got blasted!!!  One woman described her whole journey, pointing out that the CA125 and ultrasound did not work for her.

Here’s the thing:  Ovarian cancer is notoriously difficult to diagnose.  This has become increasingly clear to me as I participate in the Survivors Teaching Students program.  We go to medical schools and tell the students our stories, focusing on symptoms, tests and treatment.   I felt really positive about this program when I started.  After several months of presenting I started to wonder.  Why?  Because each woman’s story is so different.  Each survivor had different symptoms leading to her diagnosis.  Each of us took a different route to diagnosis.  Actually, it is quite terrifying listening to these stories because after listening to a few of us, two things become clear:  1)There Are NO Universal Symptoms of Ovarian Cancer, and 2) Short of surgery, no one test accurately diagnoses all cases of ovca.  This is a fact.

After realizing this I stopped participating.  How on earth could we be doing these students any good when each of us is presenting something so different?  One had back pain and was diagnosed by a colonoscopy.  One had fluid in her chest and was diagnosed during lung surgery.  One had a growth in her abdomen and was diagnosed by an MRI.  Ugh!

After a few months of not speaking I decided to chat with one of the women in my area who runs the program.  I told her I felt like we were doing a disservice.  She understood what I was saying, then told me this:

Yes, the tests available to diagnose ovca are not necessarily definitive.  However, they are all we have.

And, even though they are all we have, they aren’t being performed as frequently as they should be.  For example, the PSA (men’s prostate cancer) has been proven to be an unreliable test.  However it is still performed regularly on men over 50.  The results of this very inaccurate test often lead to biopsies, which are reliable.

I’m not sure what the naysayers recommend women do.  Ovarian Cancer is a terrifying disease, and it’s also a cancer that women have to be aggressive to get diagnosed.  Few doctors even have the disease on their list of differentials.  When women go to the Dr with the list of traditional complaints associated with ovca they are tested for irritable bowel, crohn’s and food intolerance.  They are also told to increase fiber and fluids and wait for 6 weeks.  Rarely are they told that while the chances are slim, ovarian cancer should be considered, and tests run to rule it out.  Six weeks, when dealing with high grade ovca (the most common type) can make the difference between stage 1 and stage 3.  That is not OK!

So yes, the CA125 and ultrasound are not perfect.  But they are all we have right now.  So I’m sticking with this recommendation.

The most important recommendation though is this:  if you are a woman and you feel like something is wrong, advocate for yourself.  If your Dr doesn’t listen, get a new Dr!  If you aren’t good at standing up for yourself, bring a friend.

Be assertive – save your life.

And the next time you decide to bash someone for trying to do something good, stop and think.  Are they doing something blatantly wrong or dangerous?  If not, keep your thoughts to yourself.  Do you have a better solution?  If not, keep your thoughts to yourself.  Are you adding to progress, or are you dwelling in the negative?

Yes, what I’m doing is flawed.  But at least I’m doing something.