Had Ovarian Cancer? Complex cyst...mural nodules/internal sept.
Hi Friends:
I'm wondering if anyone has had a complex ovarian cyst with words in the ultrasound report to describe your complex cyst like 'mural nodules' and 'internal septation'and 'thickened modularity'? If so did you wait a bit to have surgery or take it out? Was it Ovarian Cancer??
My left ovary is the troublemaker. I have two cysts. The first is a complex cyst lesion as they call it. Measuring 2.4x1.4x1.7cm. Second cyst lateral to the last cyst 2.8x1.8x1.9 cm has subtle nodules along the wall. My right ovary seems to be ok right now. But I am having pain on my right side off and on. Weird thing is I don't normally have pain on my left side/left ovary. And that is the side that is having trouble.
No free fluid
I've had cysts in the past that have resolved. I am 52 now tho....and my cycles are now pretty wonky. Have only had one period since last aug. But because I had one period last year they aren't calling me as being officially in menopause. Until I have been cycle free for 1 yr they say then you are finally in menopause.
My gyn was concerned enough to send me for an opinion from gyn oncologist. The oncologist of course wanted to take it out. She said she couldn't tell for sure if it was cancer til it's out. She said it looked probably benign but may be borderline. Ugh. How am I supposed to make a decision!? I'm not going to have ovary out if it's just benign! I am wondering if I should go see a second gyn onco doctor for 2nd opinion?
I had three ca125 tests (July 2018, Feb 2019, March 2019) and numbers were: 13.6, 23.2,19.5. So I asked if we could wait since blood test had come down and ultrasound showed it still there but had not grown? She said yes we could wait til aug but if it's still there I'm pretty sure she's going to push me to have surgery.
I go back for another pelvic ultrasound on Aug 9 and having another CA 125 test on Aug 9. Then I see my gyn onco the following week.
Has anyone had a similar situation? Just curious what you all have done. Please share your experiences with this type of situation.
Thank you for sharing!
Comments
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Hi there ,
I have had a lot of cysts, and complex ones most recently. I was having my ovaries removed anyway due to the BRCA gene. I had separations in my cysts, but my MRI and other tests didn't believe they were malignant as there was no enhancement. I didn't have nodules though. I get my follow up soon and hopefully pathology will confirm it.
Anyhoo, the thickenings, nodules, and septations are concerning from what I know especially if you are close to menopause, and it can be difficult to assess with imaging as to being benign or malignant as with those characteristics it can be either . If you sincerely don't want to have surgery, I would ask for an MRI to see if there's enhancement , and more detail so that it can guide you in the right direction.
If it were me, I would have the surgery but I can certainly understand the hesitation in doing so.
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BAP thank you for your response. The info you shared was very helpful! Thank you! I really don't want to have surgery if I don't need to have it. I will ask about having other diagnostics before we were to do surgery. I am so close to menopause!! If I had not had a cycle in April I would have been in menopause officially or through it. However one describes that. lol. This is really good info you shared! I agree that perhaps having a MRI or even maybe a PET scan could show enhancements on ovaries?I will ask. I may also seek a 2nd opinion from another gyn onco doctor before I were to have any surgery. Thank you!
However one more thing I should add is.....if my ovaries on Aug 9 show that the cyst has grown or become even more wonky....I won't wait. If there are signs we need to move forward with surgery I will be doing that.
I hope your healing from surgeries goes well going forward.
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I had mucinous borderline ovarian cancer. My CA125 results were not any place close to the normal range yours are in. Mine was close to 900 right before surgery.
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Thank you!. MRI is more sensitive and specific. Pet can show metabolic activity depending on where you are in your cycle so it's not reliable. I know your cycles are a bit wonky, but who knows if you'll have another period . I hear natural menopause can be that way.. just really off, I'm in surgical menopause (31) so I don't totally know how it works lol . My last pet scan showed activity in both ovaries but it was considered " physiologic" as it was bilateral and symmetric. I had cysts on both sides , but other imaging has pretty well ruled out malignancy. I would be surprised and devastated if it was cancer. So if you went that route, it still wouldn't rule anything out or in. I'd go MRI. But if you're US next week is worse, like you said, don't hesitate
Hoping for good results for you.and for what it's worth, the surgery was easy peasy
. Laparoscopic and really easy recovery so far -
Hi Melissa: Thank you for sharing your experience. I have had alot of questions about my numbers and that is one reason I am pushing to just watch this instead of jump to surgery. My gyn didn't like that my numbers were going up from 17 to 23.....but then I pushed to have another test and it was 19. I will have another test this month and if it is nearly the same I will probably push just to watch this for a bit longer. I am cautious tho....if things look worse or cyst has grown then I obviously will need to think seriously about having surgery sooner rather than later.
Thank you for sharing your experience! I appreciate it!
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Also, as far as imaging, mine was a CT of the abdomen and pelvis, with contrast.
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Hi BAP:
Thank you so much for sharing this additional information! Wow menopause at 31 probably isn't fun at all huh?
I am not completely understanding what you said above I don't think. You said PET scan isn't the best route for looking at ovaries since I am not through menopause yet correct? And you stated MRI was better option although may not completely give answers on cancer or not correct?
I may want to do another type of diagnostic if the gyn onco wants me to have surgery when I go see her this month. She was leaning that way when I saw her in March. But I wanted more obvious evidence I needed to take it out. I am almost done with cycles and maybe things will normalize and the ovaries will calm down..? I may get a 2nd opinion from another gyn onco doctor too.
Yes if US is worse or more wonky I will definately not hesitate.
That is good to know about the surgery regarding recovery. I would have laproscopic surgery as well if I have it done. Did you just have one ovary removed or both or hysterectomy?
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Melissa: That is really good to know about the imaging you had done. So I am assuming you had a pelvic US first correct? Then they sent you for CT with contrast? So it showed your cancer then? That is interesting! OK! This is good to know about CT scans. I am allergic to iodine....so CT's I try to stay away from. But I will ask my gyn onco doctor about this if my US shows worsening of anything on the 9th. Thank you Melissa! This is good information to know. I appreciate this!
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Jons_Girl, no ultrasound. They were operating under the misconception that something else was going on. As it turned out, my "ovary" weighed almost twenty pounds and took up my entire pelvis and abdomen, pushing my hollow organs into the paracolic gutters. It had my chest compressed to the point I was having problems breathing and having heart rhythm problems. Also, huge ascites. They were draining close to five liters of fluid off my belly with paracentesis every few days.
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Hey!
Menopause at this age is no fun, but neither is stage 4 breast cancer. I've seemingly been dealt a rough hand but I'm doing really well. I'll take the hot flashes in this heat if it means it'll help
I had both ovaries and tubes removed. Kept the uterus. Only reason why was because I didn't want a more complicated surgery. But I kinda wish I did away with it especially since I have been on tamoxifen.So with pet, if you're pre menopausal, not quite menopausal, then PET can be unreliable , because the ovaries can show hyper metabolic uptake/light up, depending on where you are in your cycle. if you were completely menopausal, any hyper metabolic activity in the ovaries would be extremely concerning. Since you're in that in-between phase, you could get a false reading. Like it could light up and be benign, or it could be a cancerous process, but they wouldn't be able to distinguish between the two ( and you'd be no where closer to figuring out what you want to do regarding surgery or waiting). Does that make sense? Plus, PET doesn't distinguish tissues very well, which is why they usually do Pet/cts so they can compare. BUT CTs aren't good at diagnosing cysts ( well types of cysts) either, and it's not a typical imaging test for that/.
With Mri, it can show abnormal enhancement which would be suspicious, and certain characteristics on the MRI can diagnose just what kind of cyst it is most of the time ( with Ovarian cancer it can see malignancies but not the type),. My recent MRI before my surgery showed Hemorrhagic cysts , follicular cysts and a corpus lutum cyst based on their appearance on MRI. My US couldn't diagnose the Hemorrhagic one- it was labeled as "complex" on my US report .
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Hey BAP: I am so sorry I am not sure how I missed your stage 4 dx. Yes you have been dealt a rough hand but I am so glad you are doing well! Definately hot flashes I would take any day if that would help!! Absolutely!
Yes that all makes complete sense what you said above about the PET scan and CT scan. Thank you so much for explaining that. That is really good to know. My periods are so wonky! I was almost a year without a period. I had one in April so now I wait to see if maybe this is my year of being free of cycles.
Course surgery may take care of that too if I need to go that route.I went back to look at my records and I am not sure why I put the number 17 above for my CA 125 level. It was 13, 23, 19. The 23 and 19 were just a month apart. The 13 and then 23 was concerning to my gyn that was one reason I got the referral to the gyn onco doctor esp after my left ovary looked like it did in the US earlier this year. Although this numbers ARE still all in normal limits. So I am not sure why she was so worried?
I did have a pelvic MRI in July of last year. I have the record and also the US report that was redone in Feb of this year. A second radiologist looked at my US I had done at the end of Jan 2019 and he did a report in Feb 2019. He stated on that report that the nodularity that is present on the US is not clearly present or discernible on the previous MRI in July 2018. So....I wonder why another MRI hasn't been ordered to see if it shows up this time? I think I would ask for that before surgery?? Maybe it would make the decision going forward more obvious on a MRI result? Not sure.
That is interesting about your MRI. Thank you for sharing that info. They have been suspicious in the past that some of my cysts in the past were hemorrhagic as well. I don't think it would be a bad idea to have a MRI again? But will see how my US turns out on the 9th.
Thank you for all this information above that you shared! I hope you are having a wonderful summer! We are having a beautiful day here!
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Hello Melissa: WOW! That is horrible what you went through! Thank you for sharing. That is good you had it taken out! You don't state how you are doing now and your info on your dx doesn't state year so I am not sure if you just went through that or if that was when you first joined in 2012. I hope you are doing well!
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Bumping this to see if others can join the conversation as well. Thank you.
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Jon girl, I’m fine. The mucinous ovarian cancer is a weird and rather rare condition. Surgery is pretty much the cure and it has very low recurrence rate and malignant potential, so I should be in the clear. I woke up from the surgery 30 pounds lighter than I went to sleep! The hard part was at the beginning when the idiots insisted I had cirrhosis because I had ascites despite the fact I was insistent I had no risk factors for it and my labwork was absolutely normal at the beginning of onset. They didn’t scan my pelvis until after I had an unnecessary liver biopsy that, of course, was clear
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Hi Melissa, I’m really glad your doing ok! I hadn’t ever heard of this type of ovarian cancer so sorta figured it must have been rare. I’m glad they finally figured out what was wrong.
Wow to go through a liver biopsy and they hadn’t even done a pelvic scan...that would have made me very upset!!
Thanks for sharing! I’m glad all is well!💐have a great weekend.
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today I go in for another ca 125 test. And I have my ovaries rechecked. I’m hoping the wonky left side has resolved....if not I’m assuming my gyn oncologist will tell me next wk I need to have surgery
I’m hoping that I don’t have to have surgery. Just updating.
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thanks for the update! let us know! good luck!
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Well I got results back already from my ultrasound....no major changes in the cyst just still septations and mural nodularity. GYN onco is stating we should talk as it may be cancer or borderline. Last time she told me could be benign or borderline. So I am thinking I may get a 2nd opinion.....I wish it was more cut and dry as far as what I needed to do. I don't want to have surgery if it isn't needed. Wonder if I should have other diagnostic testing? My CA 125 isn't back yet.
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Hi Ladies:
Question.....when my gyn onco is telling me there is no other testing that would help give more answers as to whether this cyst mass is cancerous.....is that a red flag? I know you ladies had other testing like CT and MRI. But she is telling me that anything other than my ultrasound I had done today won't really give me answers unless we take it out and test it.
If you had a gyn onco dr telling you that would you go get a 2nd opinion? I am thinking I am going to see if another doctor can look at my ultrasounds and my mri from last july 2018. Another set of eyes might not be a bad idea I am thinking.
Last time I saw this gyn onco dr she told me it was probably benign maybe borderline and now she is talking like it is good it hasn't grown but still concerned about cancer. UGH! So I am confused. Maybe it will all be clear when I go see her on Monday and we talk about all this.
Hope you all have a good weekend!
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IF you really feel like having a second opinion then get one. CT is not going to give you any more answers. An MRI possibly!, but ultrasounds are fairly sensitive. My ultrasound couldn't properly see my left ovary which was part of the reason I had an MRI. That and my dr was great, he knew I was nervous and wanted the extra reassurance. My OB said we wouldn't truly know until it was out and tested in path. Whatever it is you feel is the best route is the one you should take. If it were me, I'd get the surgery. Ovarian cancer can be helped if caught early, but most are caught late and have already spread. I wouldn't mess around with it. I think your Dr is concerned because age, the septations, and nodules. They can all be indicators of something more serious going on.If my gyn oncologist who has seen it all is concerned, then I would go with the recommendations. Can I ask why you're so nervous about having surgery? I understand not wanting to go through it if its unneeded, but is there another reason holding you back ?
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Hello BAP: I have decided to go get a second opinion from another good doctor at my local teaching univ hosp. They also do clinical trials, the doctor I have chosen to go see specializes in the ovarian cancer area it looks like. So will see what that dr says. I am hoping they will do another MRI to compare to the one I had last July.
The CA125 test results will be back Monday. My current gyn onco dr is telling me this cyst mostly hasn't changed since my last ultrasound in march...it hasn't grown more than a cm that I can see on the report. Still has septations and mural nodules. But I am not getting alot of certainty. I realize I may not until I have surgery but wanted to get another opinion so will go see the 2nd onco dr.
Also my CA125 results will also hopefully give some idea of whether to be concerned or not....
Regarding not wanting surgery.....mainly it is just I don't want to have another surgery. But I also have a paralysed vocal cord and would have to have a tube with this surgery down my throat during anesthesia. I did not have this with my breast cancer surgery. So I am concerned about that as well. I don't want my vocal cord damaged anymore than it already is.
Have you gotten your pathology report back? I think you said you were waiting on that information.
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Hi Jons_girl!
Sorry you find yourself in this position! I don't have a lot to offer except, for my shorter surgeries the anesthesiologist did not use a tube. BSO is a short surgery so may not need a tube while you are under. Something to ask about. Good luck and keep us posted!
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Hi Simone: Thank you for contributing to this thread! Yeah I was told by my gyn onco dr that they have to use a tube for this surgery. I am questioning that. My breast cancer surgery was tube free so I don't understand why they would need to do that!? I am going in Sept for a second opinion to another oncologist at our local teaching hospital. It is possible they are more advanced in how they do things. I want to ask and also get their opinion on my ultrasound results as well.
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Glad to hear you are getting a second opinion at the teaching hospital. I hope all goes well for you and they have better answers!
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no path yet. I went for my follow up but he said it’s summer and they’re slower at getting results in ^eyeroll*. Said he wasn’t expecting any surprises but elbowed me and said “but we just never know with you “ He was trying to make a joke but it fell flat. He told me to keep calling and I can get them over the phone. So I feel like it’s a good sign (if he was worried id imagine he wouldn’t let his secretary tell me lol)
Hope your second opinion goes well. Did you get your CA125 back
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Jons_girl - I had the same concern about the breathing tube and it was explained that the abdomen is inflated with carbon dioxide to facilitate the surgeon's view and allow room to maneuver during the RRBSO. Thus, the organs are pressed upward against the lungs. The breathing tube is necessary to ensure continued airflow throughout the procedure. I hope this helps.
(On the other hand, there appears to be an option for the surgery using conscious sedation without the tube. It doesn't seem to be widely adopted but you could certainly ask about it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4487954/)
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Hopeful,
That makes so much sense! Thank you!
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You're welcome, Simone!
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Hi Friends! Thank you BAP and hopeful for your messages above. Thank you Hopeful for explaining what the surgery is like. That is helpful. I will look at the link you sent, thank you! BAP I hope you get your path report soon and yes that is good news if he will allow the receptionist to give that info to you! That is a good sign!
Update on me: The 2nd opinion appt might be moved from Sept to an Aug appt. So I am hoping that will happen. They will let me know if I can be worked into their schedule that day.
My CA 125 is so wonky! I just don't know what to think about it! Results are below. Why do the numbers jump around? And if you were me would you be concerned having it jump from 19.5 to 28.5? I wish there were other blood tests for ovarian cancer! I realize it is still below the 35 number but 28 is too close to 35 it is making me a little concerned.
July 2018--13.6
Feb 2019--23.2
Mar 2019--19.5
Aug 2019--28.5
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Normal is normal and other not cancer things affect it. I would not be concerned. I think I told you mine was almost 1000 when I had ovarian cancer.
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