Symptoms and Screening

Hello everyone,

I felt it was important to join CSN to post my experience with the hope that I can provide some good and useful information.

A little bit about me.  I am the mom of two young boys (ages 2 and 4). I had my boys at the ages of 45 and 48 (via donor egg).  I am now 50. According to the criteria, I am at average risk to get ovarian cancer.

For the past six months, I have been bloated and most recently, have been urinating frequently.  Intermittently, I felt "twinges" in my abdominal area but nothing painful.

I went to my primary care physician to see if it was a urinary tract infection and while I had a few white blood cells in my urine, he was not convinced it was a full blown UTI.  I am currently waiting for the culture to come back.  Today, I decided to be proactive and called my OBGYN – who I have a relationship with – and request to come in for a transvaginal ultrasound.  She obliged.  As it turns out, my ovaries are clear, no cyst or cystic mass.  My OBGYN also felt my abdominal area and that was clear as well.  The culprit in this situation (so far) is gas.

What I wanted to share with everyone is that in the waiting stages of these two doctor appointments, I scoured the Internet to learn everything I could about ovarian cancer.  Since I had 2 out of the 4 main symptoms mentioned on just about every website (bloating and frequent urination), I was prepared for anything.  

What makes ovarian cancer so concerning is that it is typically caught at a later stage because the symptoms are pretty vague and could be attributed to many other things.  Today, at the appointment with my OBGYN, I asked her why, if a transvaginal ultrasound can detect a cyst or a cystic mass, how come it is not part of an annual or semi-annual exam, like the PAP test?  She did not have a definitive answer, but said while it is not part of the annual screen, she thinks it should be.  I asked her if I could make it a part of my semi-annual exam (I go semi-annually because of other GYN issues).  Her reply was that I could but that the ultrasound would have to be billed separately and that insurance would not cover it.  It would be 100% my expense, but she would offer me a discount.  I am going to do this from now on.  I will give up one latte (or 2) per day and that should cover the cost.  I asked about the CA-125 test as a preventative measure, but she said it was not accurate in determining if a mass is present.  Equally, as stated on ACS’s website for the transvaginal (TVUS) ultrasound:

“TVUS is a test that uses sound waves to look at the uterus, fallopian tubes, and ovaries by putting an ultrasound wand into the vagina. It can help find a mass (tumor) in the ovary, but it can't actually tell if a mass is cancer or benign. When it is used for screening, most of the masses found are not cancer.”

In my opinion, the reason why this may not be part of the annual screen is because insurance companies would not want to pay for this type of testing because if they did cover it, they would have to also cover the next step, which is determining if the cyst(s) are cancerous.  Let’s face it, cysts are pretty common and benign.  With that said, I am not going to let an insurance company dictate how I am going to be treated medically.  I will find the money to pay for two ultrasounds per year.  I am so glad I went through this experience and will be even MORE happy if I have been helpful n any way.

To the lovely folks on this site, and particularly, the cancer survivors, may God bless you and keep you strong.