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

starrynight5626
starrynight5626 Member Posts: 7 Member
in Ovarian Cancer #1

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.

Comments

  • lhhillman
    lhhillman Member Posts: 9 Member
    #2

    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
    starrynight5626 Member Posts: 7 Member
    #3

    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
    lhhillman Member Posts: 9 Member
    #4

    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
    NoTimeForCancer Member Posts: 3,477 Member
    #5

    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
    lhhillman Member Posts: 9 Member
    #6

    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
    AnneN Member Posts: 7 Member
    #7

    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
    starrynight5626 Member Posts: 7 Member
    #8

    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.

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