Results back from 4th U/S in almost a year and cyst still hasn't changed. Still in limbo about what to do.

[starrynight5626]

And my results didn't even state "abnormal" at the top like the others have. The results were:

Left ovarian endometrioma measures 3.3 x 2.9 x 2.7 cm, previously 3.2 x 3.0 x 2.9 cm, not significantly changed. The normal left ovarian parenchyma difficult to differentiate from the endometrioma. As before, there is a questionable second lobe of the endometrioma extending to the right adnexa, which measures 2.6 x 2.4 x 1.2 cm, previously measured 2.9 x 2.2 x 1.1 cm, not significantly changed.

I don't know. Good it's not getting larger, but it still feels weird that it isn't getting any smaller and going away. Also, this second "lobe" they mention, first showed up on the last U/S (wasn't there the first 2 U/S I had) so that is something that has changed.

The OB/GYN message to me after seeing the results:

Your left sided endometrioma appears to be stable in size with no concerning features. If you are still asymptomatic, then we can plan for a follow up ultrasound in 6 months and then if stable, consider discontinuing surveillance.

So no U/S again until July and then, I'm sure it will probably be pretty much the same, she just wants to discontinue monitoring. I questioned her on what the "second lobe" was and why the "ovarian parenchyma is difficult to differentiate" and she explained it to me and said that "neither was concerning". And this time she didn't even give surgery as an option.

I'm 53 by the way, and I have read that complex endos after menopause are more worrisome but I'm not getting that vibe from any of the doctors.

[Lizchips]

My thing they thought was a cyst it hadn't changed it was 1 cm, doc was afraid she couldn't find but I new it was a lymph node from a lymphocelle we had shrunk that was pissed,. It was removed and not cancer. I was happy it's out. And blessed

[Lily-Rose1]

Hi 🦋 I don’t want to be an alarmist but I feel knowledge is power. I too had an “ anomaly “ for almost two years .. It didn’t grow or do anything.. Ultimately my MDT and I decided to have it removed to be safe. Luckily we did as it was a recurrence of my Stage 4 OC. All my numbers were normal too.

I hope this isn’t the case for you but I felt you should be aware.

🦋🙏🏼

[starrynight5626 in reply to Lily-Rose1]

Hi. Did you have any other symptoms or was it found as an incidental?

[Lily-Rose1 in reply to starrynight5626]

Hi ,

No symptoms at all.. I was having my routine CT scan after I had been NED ( no evidence of disease) for nearly 6 years and it was spotted.. We watched it for nearly two years and although nothing was happening with it we decided it was best to just take it out.. mainly so that we didn’t have to worry about it showing up on my scans .. Not one of us thought it was malignant.. but boy were we wrong.

[Saintgermain]

I'm an OC survivor in recurrence I had no symptoms had both endometrial & OC I had silent endometriosis. I could be an alarmist I don't know what age you are after what I've went thru with this disease I would get a hysterectomy.

[starrynight5626 in reply to Saintgermain]

I am going to edit my comment to show my age, but I am 53 so there's no need for any of those parts.

[Saintgermain in reply to starrynight5626]

Can you seek a second opinion CA125 can be in the normal range I agree with Della2 get a petscan are you in the uk?

[starrynight5626 in reply to Saintgermain]

No, I'm in the US. It seems like most people on here do live in the UK and it seems like your doctors are a lot more proactive than the ones in the US.

[Saintgermain in reply to starrynight5626]

I'm in the US I would seek a second opinion or 3rd if you can a lot of OC cases are diagnosed in the more advanced stages not saying that's the case with you because doctors misdiagnose or drag their feet just a thought

[Doggies221 in reply to starrynight5626]

Are you saying you don’t need your lady parts to be sexually functional? If so, that’s ok but understand these lady parts are needed for a lot more than just reproduction, such as serving as support for other organs and preventing prolapse in addition to sexual function.

[delia2]

I agree with Saintgermain. Maybe ask for a PETscan which would show metabolic activity that suggests cancer?

[starrynight5626 in reply to delia2]

Unfortunately, I don't think they would be willing to do that. They were hesitant to even do a CA125 test so I ended up going outside the clinic to a place that does them. Then a few weeks later they said they would do one so I went my clinic and got another. Both times it was in normal range. It's just neither the OBGYN or my GP seem to think it's anything I should be worried about.

[delia2]

Well I hope they’re right!

[csewsandskis]

I had bilateral ovarian cysts discovered incidentally in early 2019 (I was 60). I’m in UK - NHS consult said nothing to worry about, although were happy to remove ovaries if I wanted (I’d had a hysterectomy in my 40s but had kept my ovaries). I saw a private consultant (gynae oncologist) who told me in his opinion a post menopausal woman should not have ovarian cysts and recommended removal. I followed his advice and immediately after surgery he told me he didn’t like the look of them. When I saw him 2 weeks post op he broke the news that the histology showed stage 3 Borderline Ovarian Tumors. I then had debulking / completion surgery 6 weeks later to remove appendix, omentum, resect peritoneum (there’d been “seedling” spread to peritoneum found in first op), and scrape bowel. I’m eternally grateful I followed his advice to have the ovaries removed as I had no symptoms and CA125 was completely normal. If I hadn’t he felt it was highly likely it would have become full blown LGSOC.

I hope my experience helps, I’d suggest a 2nd opinion if you can.

[starrynight5626 in reply to csewsandskis]

That is my fear! There have been several people on here who said they have no symptoms, CA125 normal and they end up having full blown cancer. I don't know who I'd go to for a second opinion seeing as how my GP and and OBGYN seem to agree that it's nothing.