Anyone have experience with ovarian cancer? Elevated CA-125? I was told that under 35 is okay. I am worried about my sister-in-law. Right now we don't know anything other than she has two cysts which are quite large. She just got the blood test results yesterday. Thanks for any insight as to what we might expect.

Hi Chickadee2,
I was diagnosed with ovarian and uterine cancer in 2009. My CA-125 test was a relatively low 45 and cancer was present.With a CA number that high, she probably does have some form of cancer, but DON'T PANIC yet! Cancer treatment and survival rates are MUCH BETTER than they were 10, or even 5 years ago!!!!! I had stage 1 cancer (stage 4 is the worst).But even if she ends up having Stage 4, it still isn't a death sentance, far from it!! I had a tumor the size of a football attached to my left ovary. When they went in to remove it, they found my uterine full of cancer and had to remove that too. Six weeks after the surgery I had 6 rounds of chemo. Lost my hair etc etc. My advice is to just be there for her, listen to her. I was 35 when I was diagnosed and I was told it usually is found in women in their 50's and older. I hope this helped a little. If you have anymore questions or anything just reply to my post!
I hope all goes well!

-Megan

Thanks for sharing your story Megan. I'm so sorry you had to go through all of that. She has complained of illness for a couple of years - and was misdiagnosed with things like constipation. She also has had low back pain, so I'm nervous. She's only 34. She is very upbeat right now, it's the rest of us left to worry and wonder what next. Thank you so much for sharing your story. I wish you all the best with nothing but GOOD health reports!

Heavens! A football? How much pain were you in? I had 2 little golf ball sized ones and I was in a lot of pain. When I would lay down, I could feel a small bulge. My back was in constant pain. You poor woman! That said, I love your upbeat attitude and the words you gave to Chickadee2.

Chickadee2, I just sent up a prayer for your SIL, the medical team and your family. Please keep us informed.

Just wanted to chime in with thoughts and prayers for your sister-in-law. I have endometrial cancer but it was found by accident after having a procedure done (they automatically test samples in pathology any time they remove tissue). I don't think I ever had the same blood test she did. I just know how stressful this can be for you and your family. Please post back when you have more information, you never know who you might be able to help.

I'd encourage her to find a good gyn oncologist. She could start here with a search:

http://www.wcn.org/findadoctor/

I'm sorry. I'll be hoping for the best for her.

I want to echo the recommendation for a good gynecological oncologist. My mother was diagnosed with ovarian cancer more than 8 years ago now. She had an elevated CA-125 (but please note that this is non-specific and it may not be indicative of some form of cancer) and had had some gyn problems for a while.

Although her ob/gyn was not particularly concerned that it was advanced, he still referred her to a gynecological oncologist, and my mom's gynecological oncologist performed her hysterectomy. When he did the surgery, he found much more extensive disease than he had anticipated, with tumor implants all around her omentum (the abdominal cavity, essentially), but as a specialist he knew what to look for and he removed all of the tumor implants he found.

Her cancer was staged III-B, meaning it had spread around her abdominal cavity, but not to distant body parts yet. The five-year-survival rate for her type/stage of cancer was quite low, BUT: with the surgery and follow-up chemotherapy, she beat the odds, and is eight years out with no recurrence.

I firmly believe that having her hysterectomy performed by the gynecological oncologist significantly improved her chances. A regular ob-gyn would not have been as skilled at locating and removing the tumor implants during the surgery - particularly since they were unexpected - and I really, really encourage you to encourage your sister-in-law to consult with a specialist.

I grateful to both my mom's regular ob/gyn (who sent her to the specialist) and to her gynecological oncologist. I hope your sister-in-law gets the same sort of care. Well, I hope that her blood test is aberrant and she's fine! But if not, I wish you are your family all the best as you go through this.

Cbmare, It was a big one! I had some pain, but for a few days I thought I had to do a REALLY big poop! Turns out it was cancer, d'oh!

I don't have any experience with this to offer advice, but I will certainly keep your sister-in-law in my thoughts/prayers!

So pleased to have heard from each of you. We are still waiting on the 1st consultation with the oncologist...who yes - is also a GYN. So that's good news. The consult is 2 days after Easter and the surgery is on April 15. From the time of her first ultrasound - to 2 weeks later - the cysts had doubled in size. And it's on each ovary. We have no idea what type of surgery will occur, if they will remove her ovaries or what. Apparently the xray and ultrasound did not show any cancer - ??? So I am really confused. And waiting. Thank you so much for your posts!!!!

Thank you for coming back to update us, chickadee2. How scary that the cysts doubled in size. Keeping your SIL and your family in my thoughts and prayers.

(And I'm not sure but...I don't think cancer shows on xrays and ultrasounds but I could be wrong. Mine all has to still be checked every 3 months by a pathologist with a tissue sample.)

Elvis Lover - I wish you all the best beating this wicked disease. I'm inspired by you already. We are just in this not knowing zone - wondering if it doubled in size in 2 weeks, what is going on now - did it double yet again? The doctor they scheduled her with was on vacation this week otherwise she would have gone this week. She is concerned because they say this is silent, with few symptoms,...yet she has had constipation for 2 years with severe stomach pain a few times - and she has googled that constipation is a sign - and knowing she has had problems for 2 years - concerns us even more. And sadly, she had not been for her annual "female" check up in two years. Thank you so much for your prayers. Praying for you as well with nothing but great results when you go on those appts. every 3 months.

chickadee

They cannot tell if she has cysts or cancer from ultrasound/X-rays. Really, that requires biopsy. But they CAN look at the way the sound waves in the ultrasound bend and tell whether or not a cyst has solid matter in it, or fluid (or a complex of both). Ovarian cysts (and a bunch of other 'feminine' conditions) can cause CA-125 to rise without cancer. It sounds to me like they are telling her that she has fluid-filled ovarian cysts that are growing rapidly. However, they are concerned because of the size/growth and the elevated CA-125. She will know more next week, and I wish you and her luck. Hopefully they will be benign cysts that can be managed with a laparoscopic procedure. It sounds like she is getting very good care and everyone is on top of things.

Thank you, chickadee.

The problem I noticed with all of these female cancer issues is the symptoms can all be related to other "normal" female issues. I am guilty too that I hadn't been to my gyno in a long time and honestly, the only reason I went was because I was trying to get pregnant and had no success. I thought I was getting my period twice a month (sorry if tmi...) so I couldn't tell if/when I was ovulating. Long story short, the 2nd "period" wasn't a period, it was the cancer tissue that built up bleeding. I shudder at the thought of how long the cancer was there and also what if I never tried to have a baby. This desire to a be a mom actually saved my life. And now I have a chance to have a baby, God willing!

I had no symptoms that alarmed me and other than the assumed extra period, my weight stopped me more from going to the doctors vs. me wanting an answer for the bleeding. (I hope that made sense!)

The day I found out I had cancer I think part of me died inside. Then a few weeks later, I put my cancer-kicking boots on and took a hold of my life and weight issues (with an outstanding support team from my doctors and parts of my family). And now here I am kicking cancer butt and taking names!

The best thing for your SIL now is that she is under medical care. My visits to cancer centers and appointments with the doctors were taken very seriously and everyone was extra accommodating in making sure I had every test and followup appointment necessary. It was like the world stopped for me so the doctors could get me under their care. I never felt so safe yet scared at the same time.

Thank you for your prayers.

Prayers for you, elvislover. You're quite the inspiring lady!

Chickadee- thank you for the update! I will keep her in my thoughts/prayers. Hopefully it is nothing tremendously serious, but it's a good thing that she is under medical care now.