Worried 😩

[Torapuck]

Hi I'm a 31 year old, who has had issues with bloating / pain during sex / tiredness for a fair while now .... after having a ultra sound scan they found a 7.8 cm cyst on/ around my left ovary. I paid private too go see a gynaecologist... she refers me for ca125 bloods .. which have come back raised this morning ... has anyone had raised leaves and such a large cyst that's hasn't been cancer ?

[mimanda]

Those people are out there for sure but they probably wouldn't be in this ovarian cancer group since that's why you found us here. Don't worry. Just keep following up with your doctors and ask all the questions you need to ask. Ca125 can have false negatives or false positives. There are lots of people around to support you and answer questions when you have more information on your diagnosis. We're all hoping it's just a cyst. There aren't many of us diagnosed under 40 but there are some of us and we're a strong community. It's so great you followed up on how you were feeling and went to the doctor! That is awesome and means no matter what you're closer to getting the help you need!

[acostello]

Don't take your chances. Get it removed. My first CA125 was high and I had it removed no cancer. A year later another cyst popped up and my CA125 was high, had it removed it was as stage 1 ovarian cancer. They broke the cyst in surgery which moved it to stage 1C. Don't wait. Get it out. Cancer is not something that you want to take your chances with. The earlier it's caught the better prognosis you will have.

[acostello in reply to acostello]

I forgot to add I'm 33.

I had mine removed immediately. It was Stage 1C and I went through 3 rounds of chemo. Just got a negative CT Scan today. I was very lucky.

[Sherryross in reply to acostello]

absolutely agree!!!

[eberhips]

it is important to remember that CA125 is a marker, but you should not fool around, and as acostello posted have it removed, I was one of the unlucky ones who waited and my "not feeling quite right" was Stage 3 ovarian cancer, this was 10 months ago, ovarian cancer doesn't often have clearly defined symptoms. IT IS BETTER TO BE SAFE THAN SORRY

[kissyb]

Hi. I had to comment on your post as it reminded me of my situation quite a bit, minus the pain during sex, which may or may not be related to the size of the cyst. I agree, please have it looked into and ask lots of questions. I also always say, get a second opinion as well if you can too. My cancer was found on an MRI I had done after hurting my back, I had NO symptons at all, which I think is the case with a lot of women unfortunately. I was 36 at the time. They found two cysts, one on both ovaries. One was the size of a grapefruit, the other the size of a lemon. I had an ultrasound done and was initially told they didnt think there was anything to worry about. They actually told me they thought they were dermoid cysts and would be able to remove them leaving atleast one of my ovaries in tact so as not so send me into early onset menopause. Since I wasnt sure if I was done having children yet that was great news for me. Unfortunately they couldnt have been more wrong. I woke up from surgery to find out they had removed one of the cysts along with one of my ovaries and sent them to pathology bcuz it didnt look good and were referring me to an oncological gynecologist. They were not dermoid cysts at all. A month later I had a full hysterectomy and was staged with 3A ovarian cancer. I do not tell you this to scare you at all, and please please do not take this to mean that this is what is going on with you. The only reason I tell you this is because without taking the cyst out and sending it to pathology they really have no way of knowing what kind of cyst it is. I also had an elevated CA125, which has come down since my surgeries. My advice would be to atleast try to see a gynecological oncologist if you can. It could truly be a benign cyst but so much better to be safe. Furthermore, who wants to have painfull sex right 😉 I will keep you in my thoughts and prayers and I am so glad that it sounds like you caught it pretty early which is great!! Please feel free to reach out to me, we are all here if you need anything, even if you just need to talk. Most of us have been in your shoes and are here for you!

[Simplicity1]

The doctors were actually surprised ours was malignant so hopefully it is just a cyst. Keep us posted praying for good results.

[kristinaapril]

I copied this from the my ovacome community as I wrote this before. Hopefully this will help you.

"CA125 measures a protein that is on the found primarily on the surface of ovarian cells and in very small qualities in other types of cells. While the blood test checks for the protein level, other gynae conditions can increase it, such as endometriosis, PCOS, and ovarian cyst. Since the protein is also found, in extremely small quantities in other types of cells, other random conditions can influence it as well (Such as liver disease, infections, pancreatitis, other types of cancer, and other factors that are currently unknown).

The creation of the protein that CA125 shows is different for every person, since it's creation is believed to be an immune response to a condition. Some individuals immune response is much higher (having a CA125 of high thousands) while other individuals are much lower (no change in CA125 or a small change). I would speculate that the variation among individuals, is one of the reasons that CA125 isn't testing annually in the general public (as a form of prevention).

The CA125 marker in stage 1 OC is only an indicator 50% of the time. While in OC stages 2-4 it an indicator 80% of the time. In terms of other conditions: liver disease is correlated to increase 70% of the time, and pancreatic cancer has the increase 60% of the time."

I have PCOS and normal cysts. After my mom's diagnosed of stage 3B OC, I have been tested and my level originally was above the normal range - but once the cyst dissipated, my marker came down. I've had 3 cm cysts, that have gone away (in a few months time) on their own, with the aid of birth control. Are you pre-menopause? If the gynae thinks it's non-cancerous (which a good indication can come from ultrasound/ct), monitoring with birth control may be an option.

If it is contained into one ovary - I would tend to agree with acostello - Get it out. Unfortunately, the pathology is not known until it is tested. Since it is contained - fertility and hormone production can be preserved as well.

Wishing you the best,

Kris x.

[Aire in reply to kristinaapril]

Hi Kristinaapril, I am fairly new to this website. Thank you so much for posting this as I am sure that this will help many of us understand these numbers. Wishing you the very best in your journey.

[GwenHP]

Torapuck, please at least consider going to a gyn/onc (gynecologic oncologist) for a consultation. They are the only ones that are trained to do a debulking (proper removal of the tumor(s)) should it turn out to be cancerous. To find one near you, you can go to: foundationforwomenscancer.o...