After my diagnosis in July of 2013 I made a decision:  I would go through chemo, learn nothing, invest nothing, and never look back.  Cancer would be a blip on my radar, not a life changer.  Turned out my son was not going to let me get away with that.  Having faced the possibility of losing his mom when he was 12, he forced me to do something.

For the past 4 years, he and I have done some things.

Here is the most important lesson I’ve learned:

Ovarian Cancer is Different For Every Woman

I learned this participating in the program Survivors Teaching Students.  As part of this program I go to medical schools with other survivors, and we tell our stories.  Our intent is to educate the new Dr’s about ovarian cancer.  We are impactful.  We hear, time after time, that the students learned more from us than their teachers.  We are told they will remember us when dealing with other women.  We all leave the presentation feeling we’ve made a difference.  And I pray we have.  But I’m not really sure.

I’ve presented with over 10 women and each woman had different symptoms.  Lower back pain, shortness of breath, tiredness, frequent urination, inability to get pregnant.   I listen to each story and wonder what we are teaching these students.  It feels like we are teaching them to always consider ovarian cancer.  Always test for it.  Always run a CA125 blood test and perform a pelvic ultrasound.  Regardless of the symptoms.  Is this helpful?

Here is what I know as fact:

• we all experienced growth around our middle (i.e. bloating).  All of us changed pant size, even though nothing else changed.
• most of us gained weight.   Most Dr’s assume weight gain rules out cancer; not ovarian.
• we all suspected something was wrong, but felt like hypochondriacs pushing it.
• almost all of our Dr’s dismissed our concerns.  There are 2 exceptions.  Out of over 10.  And I’m told that when large groups of survivors gather, there is less than 10% that had Dr’s who considered ovarian cancer as an initial diagnosis.

 

Where does this leave us, on this day of awareness?  I’m not sure.

The only real message I’ve gleaned from this is that we know when something is wrong, and we must stand up for ourselves.  It is up to us to insist on testing.  It is up to us to force Dr’s to pay attention.  It is up to us to not accept the premise that cancer always presents with weight loss.  

It is up to us to get diagnosed.

Which isn’t really helpful, is it?

FYI, common symptoms, all of which I experienced, include:

• bloating
• urinary frequency/urgency
• change in bowel movements, usually with no rhyme or reason
• weight gain
• difficulty eating/feeling full quickly/abdominal pain
• fatigue

 

Less common:

• lower back pain
• low grade fevers
• change in periods
• fertility issues

 

Tests:

Pelvic Ultrasound & CA125 Blood test.  These are cheap, relatively easy tests, that might save your life.

Insist.

Persist past your embarrassment.

Survive, if not for you, for someone who loves you.