Symptoms and Screening

MomToJesseAndJames

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.  

joyce1121

TV Ultrasound

Hello. I am wondering if the inconclusiveness of the results is the reason neither the CA125 marker nor the TVUS are used preventatively. I found the TVUS very uncomfortable and unnecessary. In my case a small ovarian cyst had already been found using an abdominal scan, and an elevated CA125 marker showed up on a blood test. I was told cysts were common and blood tests could have false positives, but because I also had ascites and fatigue, my primary care doctor pushed for exploratory surgery. As she said, at some point, you simply need to have "eyes on." They found stage four ovarian cancer. If surgery is required to confirm elevated CA125 markers and cysts are cancerous, I'm not sure CA125 and TVUS tests are good preventative measures. I would be interested in what your experience reveals. 

Tethys41

Monitoring

Unfortunately, at present, there is no good monitoring tool that is available for ovarian cancer.  I was diagnosed in 1999 with endometriosis after a large cyst was found and I had surgery and one ovary removed.  For the years after that, my gynecologist monitored me closely, doing an ultrasound and a CA-125 each time I complained of pain.  If a cyst was identified, he used either birth control pills or Depo to reduce the size.  I moved away, found another doctor, and went for 5 years with no pain.  I requested a CA-125 each year during my annual exam and they were always normal.  But after the 5 year hiatus, I did experience pain again as well as extended periods.  My new practitioner recommended an ultrasound, which found a cyst, but she recommended a D&C due to a thickened endometrium and was unconcerned with the cyst.  After the D&C, the cyst had shrunk considerably, but the pain continued.  She assured me the pain was due to scar tissue, related to my surgery 10 years earlier.  I continued to complain and she finally referred me for another ultrasound.  This was 7 weeks after my D&C.  The results were very abnormal and a follow up CT scan identified what turned out to be stage III ovarian cancer.  At that point, my CA-125 was 4600, while a year earlier it was only 9.   Even when you do everything right, you don't always catch the cancer at an early stage.