Diagnosed with 3.5 cm ovarian endo, CEA and CA125 normal. Should I get a laparoscopy or watch and wa

starrynight5626

I have a 3 month follow up U/S in 3 days since I opted for the watch and wait scenario rather than surgery since the OBGYN I dealt with told me she thinks the chance of cancer is low. I told her my aunt died of OC but that didn't change her mind. I asked a couple of times to get the CA125 test but was told they wouldn't do it because it doesn't really tell them anything even when I asked to get it so I could know more when going in for my U/S and even just for my peace of mind.

So I took matters into my own hands and bought a test thru Ulta Labs. Went and got my blood drawn yesterday and got the results today. I got the CA125, CEA, and CBC and everything was in the normal range. CA125 was 18. So that makes me feel better.

So what would you do if you were in my shoes and the U/S shows no change in the endo? This first started with a CT scan in March that found this incidentally and noted it as 3.5cm mass of some sort, then had the U/S in April and they noted it as a 3.6cm mass, and the MRI in June finally said that the mass is an endo at 3.2cm. The size has remained pretty much the same and I'm guessing those measurements are negligible. Keep monitoring it or go in and have the lap done? I mean it was there for all three scans over 3 months so I doubt it will be any different this time. I know the CA125 has showed up normal on people who ended up having cancer. I have no pain and I wouldn't even had known if this hadn't been found as an incidental.

lhhillman

I am in a similar situation. Had a CT scan one week ago for an unrelated issue and they discovered a cyst in the adnexa which was 3.0 for 3 months then grew to 3.7). Had a transvaginal ultrasound on Friday, waiting for results though the techmician told me after measuring that the cyst decreased in size to 3.2.

Anxious due to the waiting. My doctor has not yet ordered the CA125, as from research, it is not a reliable diagnostic tool. If they suspect cancer, I would go straight to a gync-oncologist and get a hysterectomy. I do not know if they would perform a biopsy first- the quicker they remove it the better.

starrynight5626

We're you diagnosed with an endo or some other kind of complex cyst or a simple cyst?

I'm 52 y/o and never had a surgery before and I'm anxious about having one so I'd rather not have have it if not necessary. But, if I don't then I'm going to worry until the next U/S in 6 months. If that one shows no change or shrinks then they will discontinue monitoring it. I'm post-menopausal so an endo kind of worries me.

I wish you good news! Please let me know the results once you hear them.

lhhillman

I have not received a diagnosis yet, yet am worried and anxious. My gynecologist told me not to worry: it's small and only first showed up 2 months ago. It was very small- 3.0 so I was not advised to get it tested. As it slightly grew they wanted me to get the tests. If inconclusive, I think the waiting and not knowing would drive me to the brink. So for me I would opt for surgery biopsy to know if it cancer or not. I'm post menopausal too and have only had 1 minor surgery. I would definitely consider a hysterectomy .

Good luck to you as well

NoTimeForCancer

Ladies, I am a visitor from the Uterine/Endometrial cancer page. I like to see how the other gyn cancers are doing, so I hope you don't mind me just adding my two cents.

I was fortunate my gyn said, "Let's find out what is going on." I also was fortunate that as soon as it was cancer I was automatically turned over to a gynecologic oncologist. I had no idea, so that you all found this place to chat is just fantastic.

I will say, you have to be your own advocate. It is your health, and if there is a history in your family, please PUSH them for more. The earlier cancer is found the better. Hugs to all of you and don't be afraid to ask for a second opinion. It is all about you.

lhhillman

what tests did you have to confirm the cancer diagnosis? So far, CT scan and transvaginal ultrasound. I'll push for biopsy if there are any questionable results. Just not sure how my medical provider goes about this: CT scan, transvaginal ultrasound- PET scan- blood testing- biopsy-surgery. I will not accept a "maybe, let's wait and recheck".

AnneN

I, too, would opt for a hysterectomy. If you are post-menopausal or not planning on children in the future, your lady parts are not doing anything, so why risk keeping them. My (radical) hysterectomy was done robotically, same day, no hospital stay, and recovery was not too bad. I had lots of scans that indicated benign fibroids with hysterectomy recommended. Only after surgery and post-op pathology, was stage 2 ovarian endometrioid carcinoma found - and it was a large tumor that looked like a fibroid on CT and MRI scans. It is really hard to diagnose from scans and tests. And it can move quickly. A biopsy will only show cells where they take them, and can spread cancerous cells from the biopsy procedure itself. Good luck with all this. It can be a physical and emotional rollercoaster. And, feel free to get a second opinion!

starrynight5626

So my test showed that the endo has remained the same size but now there appears to be another slightly smaller one on the right side and they "communicate along the posterior of the uterus" so I guess that means they touch according the doctor. I still have the simple cyst on my right ovary at 1.4 cm which hasn't changed this whole time along wiht the pedunculated fibroid that has also remained the same size

"Redemonstrated within the left adnexa is a 3.2 x 3.0 x 2.9 cm hypoechoic focus with multiple internal hyperechoic echoes present. No associated internal vascularity. This finding previously measured 3.2 x 3.0 x 2.9 cm. A similar finding is seen within the right adnexa, measuring 2.9 x 2.2 x 1.0 cm. These findings appear to communicate along the posterior margin of the uterus, best seen on the cine images. No pelvic free fluid."

The doctor FINALLY let me have a CA-125 test just for my own benefit and it came back at 16 so normal range. The doctor put in her notes:

Generally minimal change of left endometrioma - possibly now connecting with smaller or similarly sized right endometrioma which was not apparent on previous ultrasound. - Discussed low probability of cancer but cannot be 100% certain - offered continued surveillance vs diagnostic laparoscopy, oophorectomy for endometrioma. - Discussed CA 125 for reassurance/decision for continued surveillance - ordered next ultrasound for 3 months"

I currently have some family issues going on right now and me adding a surgery to the list isn't really the best thing right now. So once again I have opted for another U/S in 3 months.

didyouknow213

Due to intense pelvic pain, I had an transvaginal ultrasound August 5th 2024 that showed a 3cm "complex cyst' on my right ovary. When I had an MRI done 3 weeks later, it showed this cyst had grown to 8.4cm - and it was now called a "mass."

I was referred to a gynecological oncologist. We tested tumor markers (all were within normal range) & CT scan of my chest, abdomen, pelvis (all clear). On Sep. 23rd I had another transvaginal ultrasound that showed the "mass" was now 11.3cm…so very rapidly growing and surgery to remove the mass was scheduled right away.

I went in for surgery to remove my right ovary & fallopian tube, as well as the mass Sep. 25th - but at that time, we still did not know for certain if this mass was benign or cancerous. Unfortunately, post-surgery, the pathology report for the biopsy of the mass showed it was indeed ovarian cancer. I was very lucky to catch this early (I was staged at Stage1-2) and get the mass out of my body before cancer could spread anywhere else.

I am now scheduled to go back in for surgery for a total hysterectomy (I didn't need any fertility sparing) and complete lymph node extract with further biopsies of those removed organs + chemotherapy to follow.

Cysts will usually burst and go away with time, but if you have a persistent growth, it could indicate something else. That said, I would not to recommend a hysterectomy if you don't need it - while there are the pros of knowing you can't get cancer on organs you don't have…there are downsides to getting a hysterectomy as well (early menopause without option for hormone therapy, surgical risks, prolapse, etc…). You may want to get some genetic testing done to see if you have an increased risk for this kind of cancer. And definitely will want to monitor the growth - especially if you have any accompanying pain.

starrynight5626

https://csn.cancer.org/discussion/comment/1719139#Comment_1719139

I am sorry your growth was cancerous, but glad it was caught early enough before it spread.

I still have not opted for the surgery and am going back at the end of January for another pelvic ultrasound. The 3.2 cm cyst on the left adnexa has remained the same since at least March (almost 10 months) when it was first spotted) and now they say it looks like there is another that is approximately the same size on the right and they are communicating, which I guess means they are touching. I don't quite understand that because aren't the left and right adnexa's a little ways away from each other??

The doctors don't seem too concerned about it and all I do is waver back and forth on whether I should have the lap or not because I don't want to have unnecessary surgery if it's nothing.

Winnie155

I have just founded out about this thread on the subject of ovary mass when browsing through this forum because tonight I have some intermittent sharp pains on my right pelvic while walking and I am concerned. Have any one had something like that? The pain is gone now but i am worried. This is my story. I am having a complex, right ovary mass too and it measured about 6.7cm. It was accidentally discovered in December 2023 when I had a MRI done for my back issues. My gynecology oncologist did the pelvic exam and she said she felt the soft mass so she said that’s a good sign. My CA125 test result was 8 so it’s normal. At first, my doctor said that i should have a hysterectomy done since i am menopausal and there is no need for them. I asked to have just the mass or both ovaries removed and she said no because she is worried about the spillages if it’s turned out that it is cancerous. She said its best to take all out but I am worried about prolapse, incontinence and dementia. I am so terrified of surgery as i have never had major surgeries and she said we can monitoring it. So far, I have had 3 pelvic/transvaginal ultrasounds done and the mass has not changed in size. My last ultrasound was on November 3 and my doctor has switched me to an annual pelvic/transvaginal ultrasound from now on. I have asked for having an MRI done and she said it’s not needed as it only shows the picture of the mass. She thinks it is more likely a benign and over times it will confirm that. Because of the mass, when i go to the bathroom, it would take me a while to empty my bladders. I don't have any history of cancers on both sides of my families, but the fact that i have a mass inside, even it’s unchanged, I am still very worried. I don't know what to do about it and if it will ever getting smaller or going away. 😢

AnneN

Winnie155, Please do not mess around with this. Your experience sounds a lot like mine. I was having difficulty emptying my bladder, a mass showed up on an MRI taken for back issues, nothing abnormal with multiple trans-vag US, MRIs, CA125. I saw Gynos, Uro-Gynos, PCPs, in both FL and NYC. Everyone thought it was a big, benign fibroid. I had a total Hysterectomy to relieve the bladder issues. by the time I eventually had surgery, I could feel the mass when lying on my back. Even after surgery, it was not diagnosed until the pathology came back - Ovarian Endometrioid carcinoma- grade 2, stage 2. Fear of surgery is understandable, but fear of OC is more important. The Hysterectomy recovery was not bad, btw. I have my final chemo in a week (YAY!). I feel very lucky. So many women do not catch this in time.

Winnie155

AnneN, thanks for sharing your experience. How big was your mass? And how long did you have it before the removal? How long was your recovery from the surgery? My bladder muscles aren't very strong, and sometimes i am leaking when i sneeze so i am afraid with hysterectomy, I will be incontinence .

didyouknow213

https://csn.cancer.org/discussion/comment/1719347#Comment_1719347

I would be much more aggressive - and ask for a referral to speak with a gynecological oncologist vs. just your normal OBGYN. Ovarian cancer is sometimes known as the "silent" killer because most women don't find out they have this type of cancer until it's Stage 3. For reference, my mass was soft, my tumor markers (including CA125) were all normal (with ovarian cancer the markers often show "normal" even when they aren't), and my doctors also went into my first surgery thinking it was a fibroid. Wasn't until after surgery that we found out it was cancer.

A 6.7 mass needs to come out regardless - it's too large. You can always opt to stage everything, ie. remove the mass and the ovary it is on, then have the mass biopsied - and then if cancerous determine if you want to do the complete hysterectomy later.

Surgery is absolutely scary - but so is the regret of not doing something when you had the chance. Hysterectomy is a common surgery and the easiest way to reduce your cancer risk if your biopsy were to come back positive for cancer. There are so many excellent laproscopic/robotic doctors out there - and they can re-suspend the bladder to prevent prolapse. Incontinence is really only an issue if they nick the area during surgery - which is why you want to ensure you have the best surgeon possible if that's what you need.

I echo Anne - don't wait…seek a second opinion from a gynecological oncologist. And possibly consider genetic testing to see if you are a carrier for any genetic mutations that put you at increased risk for cancer.

Winnie155

didyouknow213, Thanks. The doctor I have been seeing is a gynecological oncologist. I will write my doctor and ask for the genetic testing. The last time we messaged, she feels strongly that surgery is not necessary. Should i be asking for a second opinion with another doctor? Right now, i cant have the surgery as my husband has had a recurrence with his Prostate cancer and everything is up in the air right now. I need to be able to helping him if he gets his treatments soon. The whole worlds have collapsed on my family this year and i am suffering from depression.

AnneN

Hi Winnie: My mass measured 6cm x 8 cm x 2 cm in January '24. When I finally had my hysterectomy in late July it was 16 cm x 24 cm x 3 cm. It ruptured during surgery, but was bagged before it ruptured, and was a soft mass on the right ovary with lymph system invasion. I started having difficulty urinating and emptying my bladder in October '23, and some minor spotting, so my diagnosis took about 9 months. A lot of that was delays due to trips we had planned and having healthcare in 2 locations (FL and NYC, so MDs wanting to run their own tests). Hysterectomy (robotic, total - all the lady parts out) recovery was not bad. I had an uncomfortable week - a hysterectomy pillow (Amazon) and hot/cold pads help a lot, and about 3-4 weeks of taking things easy. My urinary issues are so much better now. Don't be afraid of surgery!

Winnie155

AnneN Thanks so much for your reply. It’s been a year with no changes in my mass but I can’t live with the fears that something is inside of me when it shouldn’t be there in the first place. I will write my doctor and seriously considering the surgery. Thanks again AnneN.

AnneN

Best of luck with everything, Winnie. It sounds like you are dealing with a lot right now.

Winnie155

Thanks AnneN