Risinng CA125

[never give up hope]

My results of my CA125 keeps rising. In 2006 a cyst was found and removed, the results at the time was 46, after the removal of the cyst it went down to 32. This year it is 62 and keeps rising. A 7cm cyst is on the right ovary, I have endometriois and fibroi, with no complications. No heavy periods no craming.
My first Dr wanted to do a hysterectomy. I decided to seek another opinion. The new doctor requested a CT SCAN and additional blood works.I had a CT scan, it only showed the cyst. The liver and kidney functions are fine. He has referred me to a GYNO/OCON. I am 43yrs old. Should I go ahead and have the hysterectomy so I won't have to be putting myself through all of this stress that I am putting myself through. Please if anyone has any suggestion I would really appreciate them at this time. I am so confused.

Never give up hope

[never give up hope]

I pray that your surgery is a success. Good luck and God be with you.
Keep positive, I can't begin to imagine how nervous you are the thoughts of just doing surgery is nerve wracking.

My Dr wanted to do a hysterectomy a few weeks ago because my CA 125 was rising. I am so terrified. I am trying to get an an appointment with a GYN/OCON soon, the wait driving me crasy.

Take care

Never give up hope.

[never give up hope]

Hi,

This is so terrifying! and definately a rollercoaster. I wish I could just delete this part of my life. I am hoping to get my appointment soon to see an GYN/OC. This is driving me crazy, everybody is telling to keep the faith and pray, but at times I do break down, just wondering about the unknown.

The CA125 can sure drive you crazy, the thought of having cancer is so devasating. My prayers and thoughts are with you, and I pray than when you go back that everything will be okay. It is the wait and the unknown that drives you insane.

Keep me posted.

[roller coaster]

I am 38 years old. I had excruciating pain on my left lower abdomen and made an appt. to see my gyn. dr. the next day. I had a pelvic ultrasound that showed cysts on both ovaries and also a mass behind my uterus. I also had a CA125 drawn which came back at 64. I then went to a gyn/oncologist and had a 2nd CA125 drawn which came back at 95. I then went for laparoscopy and was told that the biopsy and washings came back normal. I was diagnosed with stage 4 endometriosis. At my follow up appt 3 weeks following the laparoscopy my Dr. told me that there still could be a chance of cancer in the deeper tissues and repeated the CA125. It came back at 164. I am terrified. I thought I was in the clear. I spoke with the Dr. and he stated that after surgery the CA125 can be elevated and that I need it rechecked again in 2 to 3 weeks. He also stated that if this is ovarian cancer that it is early. I feel like I am on a roller coaster from hell. Feel free to comment!!

[LILYBUG]

Hi,

I first must clarify myself. I don't work with gyn/oncs, so I'll tell you how this all unfolded. In '05, I had horrible ab pains. Couldn't figure them out. My GP was sending me to my OB and said to do the ca125 test first so she'd have results at appt time. Ended up in ER that weekend to have my appendix removed instead. In Sept of '05, I found out I had melanoma. I travel to MD Anderson for treatments and tests. I once had to have a bloodlevel rechecked at home for melanoma stuff and they accidentally pulled that old CA125 order and checked it by mistake. It was elevated, and so the gyn roller coaster began. I spent every 12 weeks in 2006 having chest ct, ab ct, pelvic ct, brain mri, and chest x-ray to monitor the melanoma and because I had other ab pains. I got to add the ultrasound and transvag ultrasound to the list every 3 months because of the ca125 and cysts and fibroid. In May of '06 I had my gallbladder removed because it was not functioning. Before that had to have a heart work-up due to family history before surgery would be done.That still did not stop the pains.I also had a liver test. I then had a colonoscopy. Although I have spots in my liver and lung, they are stable and haven't grown in over 15 months. I also had several mammos and u/s and biopsy of breast. Everything checks out fine. Still can't figure out why I have so much right sided pain and elevated ca125 but I certainly feel as though I've been check thoroughly. They think it is nerve damage from one of my surgeries. I am now on 6 month check-ups and just passed my last one with flying colors. Good luck to you.

[never give up hope]

Hi,

Oh my goodness this sounds like my story as well. I guess I will soon be going through menopause  as well. I have been having problems with my tooth for a few weeks now, also when I took the CA 125 last week I was having my period. I asked my DR about this but he said no that would not elevate it. Since you work with GYN/ONO you have so much more information at hand.
It is so scary, I have to wait to get the appointment with the GYN/ONO.
Thank you so much for replying and sharing your story with me, I feel like a burden has been lifted.  

I should have asked why did you start doing the CA125 test. The reason I did it was because I read about the lady on the internet who recommends women to request the test, along with a pap smear, as she could have been diagnose with OVCA if she had had the test done.  I also understand the some Dr's don't recommend the test, what are your GYN/ONO thoughts on the test?

Take care,

Never give up hope  

[never give up hope]

Hi

I am waiting on my dr to set an appointment with the GYN/ONO. hopefully within the next two weeks.  It is so terrifying. I am trying to think positive and pray more. Thanks for your advice.  I will keep you posted.

[nervousnurse]

I can empathsize with your decision.  Tomorrow I am going to have a hysterectomy with bilateral salphingoopherectomy.  I am 39 years old and premenopausal.  I had spotting and right sided flank pain.  I had a TVA which showed a complex  5.4x 5.2x4.8cm cyst on my right ovary.  I had a CA125 drawn and it came back at 123.  I saw a OB/GYN who did a endometrial biopsy and repeated the TVA.  My left ovary now has 2 complex cysts too. I could not get in with a GYN/ONC prior to my surgery date and I am such a nervous twit that I can't stand to wait to get these things out of me.  The doctor is pretty sure that my cysts are endometriomas.  My uterus has polyps and fibroids.  I have posted before and thank God for these woman who have been very reassuring and supportive.  Whatever you decide you are in my prayers and good luck.

[nyc lady]

I meant pre-menopausal not post-menopausal....sorry for the confusion

[LILYBUG]

Just wanted to share my story with you. For about 20 months now we have been watching my ca125 and doing u/s and CT's (probably 4-5 or more). My CA125 usually runs about 50. With this last check-up it went up to 176 (I was on my period and had very infected wisdom teeth). Two weeks later it was back down to 57. I again had a CT and u/s and a consultation with MD Anderson (and some of the past tests done there as well). I also work with a top local Gyn/Onc. All they ever find is a fibroid, and sometimes a cyst on an ovary (but some tests don't show the cyst, which is why they think it is normal folicle). Short of surgery, I really feel I've been monitored very closely and by very good doctors. I tell you this because at this point they believe I'm a prime example of someone pre-menopausal who has other things besides cancer affecting my CA125. As someone else mentioned, you might feel better knowing you're under an Oncologists care. I understand the frustration of wondering when do we stop testing if nothing is ever found wrong. Best of luck, keep us posted.

[nyc lady]

There are numerous reasons why a CA125 count will rise, especially in a post menopausal woman and one with endo as well.  While the counts are "above" the normal range, they are not alarmingly out of control.  

If I were you, I would see the GYN/ONC and not because I think you have cancer, not at all, because they have 3 years additional training in gynocological issues.  

If the cyst is confined to one ovary and it is not cancerous, then why would they perform a hysterectomy....also remember, hysterectomy is techinically the removal of the uterus - if you have fibroids and/or endo, then there is possibly reason to remove the uterus.  Oopherectomy/salpingo is the removal of the ovaries and tubes.  

AND remember, most cysts are benign...the waiting to find out what is going is so hard.  When do you see the GYN/ONC?

Keep us posted.
Pam