Could I have Ovarian Cancer even with a normal CA 125 result?

[JOJO5297]

Hi. I am a 32 yr old with diagnosed PCOS. I have been "dealing" with PCOS for over 7 years now. I have been seeing the same OBGYN since my initial diagnosis and although I am every comfortable with him, I don't feel that my condition is truly getting the attention I feel it should get. With multiple laporoscopic procedures to remove cysts (to include one that had 1 liter of fluid), I feel that he is extremly quick to open me up. Now I have lots of scar tissue and am no longer a good candidate for surgery. I also had a post op sepsis infection (psuedanomas and staph) that lead to kidney failure and open abdomnial surgery. I had extreme difficulty in conceiving and even after some time in residence at the Mayo Clinic and being told that I could never conceive and carry to term, I now have a beautiful baby boy. My mother is a breast Cancer survivor having had her first lump (stage 3) at the age of 31. My Mother's Dad (my grandfather) has Prostate Cancer.

In the last six months, I have developed a complex septated cyst (and some smaller simple cysts) that is now the size of a grapefruit with several septations or walls that appear to range from "thin" to "mid-thickness" according to what my OBGYN stated was on the reports and I continue to have the following symptoms: Severe Abdominal Pain, Dysfunctional Bleeding (sometimes bleeding for 6-8 weeks at a time and saturating a sanitary pad at a rate of 1 every 45 min to an hour: I had TSS in 2000 and therefore can no longer wear tampons), Feeling full quickly/difficulty eating, I feel like I always have to Urinate but not a lot comes out, Abd. Bloating, Pelvic pain, Pain during intercourse, lower back pain, fatigue (yes, I have a 1 year old and new mommies get tired, but I had the fatigue prior to pregnancy), and Chronic Intestional issues i.e consistent diarrhea no matter my diet (I've seen a Gastro doc and had both upper and lower GI series done and no sign of diverticulitis or any other conclusion that I have IBS), yet my OBGYN brushes me off as having IBS. I insisted on a CA125 and the results came back "ok" according to the receptionist. I don't know what the CA 125 number was. Since then I have had one Ultrasound after another about every 3 weeks. The complex cyst has "...engulfed the Left Ovary completely" according to one Ultrasound report. I have gone to a second opinion but she is focusing on the dysfunctional bleeding only. I had an endometrial biposy done and polyps were noted but no malignancy.

I guess my question is the following: Considering my history, first degree history of Breast Cancer with my mom, Prostate Cancer with my Maternal Grandfather and my list of symptons, how do I press on? Is it possible to have Ovarian Cancer with a "normal" CA 125 test result? Should I go to a third opinion? I know that the best advocate for a patient is one's self, but I'm running out of OBGYN's that I can go to through my insurance... Please help...

Thank you...

- Scared of a Silent Killer

[JOJO5297]

Thanks you so much GreenWoods! I was actually just about to call my PCP to see the ARNP and thought to log in real quick to see if I had any feedback. I will definitely keep everyone posted!

Reminder All, September is Ovarian Cancer Awareness month! Wear Teal this coming friday and shwo your support with your local organizations. Thank you!

[GreenWoods]

to continue.....and I think it is great you are planning to see a gyn/onc.

[GreenWoods]

My CA 125 was 9.2 when I had a small testosterone secreting tumor removed in Oct. 2006.  It was a very slow growing tumor in my case.  From everything I've read, including periodically checking this forum for the last two years, CA 125 is not a definitive test for ovca.  And the only way to diagnose ovca is to remove the cyst or tumor and get a path report. It is the pathology report that actually tells you what it is.   Most cysts are benign, so I don't want you to worry either, but you might want to ask the nurse in your PCP's office if you can get a quick appointment this week just to get the referral.  My PCP's office always has a slot open for urgent visits.  They just don't advertise that fact.  Perhaps yours does too.  I am glad you are pursuing this.  Sometimes its a drag to have to continually be your own advocate, and I

[JOJO5297]

UPDATE: I contacted the GYN Oncologist in our area and they only take patients on a referral only basis. Even though I have a PPO insurance that does not require referrals, the specialist does. With that being said, the appoint with my PCP was rescheduled due to a family emergency on his part and I won't see him until Sept. 15th. Meanwhile, I have had another Ultrasound since my last post and the one particulary complex cyst has grown another cm in less than a month and had i not picked up the report from the diagnostic center, I would not have known that. My GYN has not called me yet to discuss the ultrasound. I feel so nervous and neglected by the medical community I am depending on.

Thank you for your support and listening.

[JOJO5297]

Thank you so much for all of your empowering words and insights! I think I don't need a referral with my type of insurance to see a gyn/onco so that is exactly what I will do! I have an appt. with my PCP so I will discuss with him as well. I just want to be around for my beautiful miracle baby... I didn't work this hard to lose it all to un-interested docs... :(

Thank you again and Peace be with you!

[ChrisP2236]

StillFighting and Joanne are right, please see a gyn/onc.  My CA 125 was 6 and I still had ovca - CA 125 isn't a marker for all ovarian cancers.  I also had most of the symptoms and tests you are describing, except the bleeding, and was also diagnosed with IBS.  I had to actually say to my dr "let's rule out ovarian cancer" before I got the testing I needed which showed multiple cysts on the ovary.  You already know you have a cyst and it is growing. Unfortunately, in a case like this you must be your own advocate and keep pushing until you get to the cause of your symptoms. If your dr blows you off, you need to fire him and find someone else - he works for you and if he's not doing the job you need him to do you must find someone who will.  Good luck and let us know how it goes.  Chris P

[jlock]

I agree with still fighting.  I would go see a gyn/onc.  it is possible to have a normal ca-125 and still have ovca.  With your Mom having breast cancer(the prostate cancers are not really related to ovca,but breast cancer is) I think you need another opinion. With all the inflammation going on,I'm very surprised your ca-125 wasn't elevated.  Good luck and keep us posted~~~Joanne

[StillFighting]

P.S. Good luck hun and let me know how it goes.

[StillFighting]

OBYN's can be such terds, yes you can have still have cancer with a normal ca125. Would be interested to know what that number was though....

do you have a pcp?????? I would go to him, express your concerns, tell him everything thats going on and have him refere you to an obgyn ONCOLOGST....They are cancer specialists that can help you further.