Hi. I am a 53 yr old menopausal woman. My backstory is in March of last year I went to the urgent care clinic with stomach pains. The doctor suspected it may be appendicitis so sent me for a CT scan. The results came back as diverticulitis, but as an incidental, a 3.5 cm complex cyst was found on my left ovary. They told me I should have an ultrasound, which I did about a month later. They had a hard time telling what it was because the ovary wasn't clearly defined. They thought it was more likely a fibroid than an endo, but sent me for an MRI to see better. Even my GP said it was most likely a fibroid. However the CT scan in June showed it to most likely be an endo.
They set me up with an ultrasound again in 3 months to see if it changed. In October that ultrasound showed the endo at 3.2 cm so slightly smaller, but now they were seeing a similar finding in the right adnexa measuring 2.9 cm and that they communicated along the posterior margin of the uterus. This concerned me that now there was another one that wasn't seen 3 months earlier.
I went in and saw an OBGYN the following week to talk about it. I had asked my GP about a CA125 test but she said that it wasn't necessary to do it. I was irritated by that. The OBGYN said that I don't have any other issues that would point it towards being cancerous since I had no pain and that it hadn't grown. I asked about the new cyst and she said it wasn't worrisome. She gave me the option to have a laparoscopy or to just monitor it for the next 9 months and if it doesn't get any bigger then we can discontinue looking at it. I am not huge on having surgery and she wasn't pushing it so I opted to monitor it. I did ask again for the CA125 and she allowed me to get it. Results were normal at 16. She did say that everything is pointing to it not being cancerous but that they still couldn't be 100% sure unless they went in to take it out.
Well went in for another ultrasound in late January. All the other results I got online stated "abnormal" at the top. This time it didn't even say that. 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 and that this "second lobe" appeared that they don't seem worried about.
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 ultrasound 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've read that any endo after menopause isn't normal so I'm concerned that the doctors don't seem concerned.
Hello SunnyDisposition
I am Brian one of the Community Champions here at Macmillan. I can't answer your post as I have a very different cancer, however by me responding to it, it will be "bumped up" to the top of the thread and I hope be seen by other members of the Ovarian Cancer form and answered. I do hope you get some answers soon.
If i can do anything else for you please do let me know.
Best wishes - Brian.
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Hi SunnyDisposition I think we put a lot of faith into our medical team, as they are the ones that are the experts, so we trust them on their decisions. But they are also only human, and have been known to make mistakes, so if you feel that you are not happy with her decision, then you have every right to question her. It is your body! your life that is in their hands. If this was a family member of mine, I would be saying it is great that the consultant isn't worried and is happy to monitor, but I would want it looked at properly by surgery. If you think this is a route that you now feel you want to go down, then speak to your GP, and tell him you want a referral for a laparoscopy. This was suggested last year, and things haven't improved since then, so I don't see why it wont be an option now. Be firm, nothing wrong in being your own advocate. Good luck, let us know how you get on.
