Update to a previous post I had about ultrasound and CT not being able to detect if it's a fibroid or a mass.

[starrynight5626]

So this is what I had wrote a few days ago:

I (post-menopausal 52 y/o) went in to urgent care about a month ago with stomach pains. Doctor thought it was a ruptured appendix, but sent me for a CT scan to verify. Turns out it was diverticulitis, but on the CT scan they noticed a a complex cyst on my left ovary, however they couldn't be sure if it was just a fibroid, which is definitely there, or also a mass.

I was referred to an ultrasound which I finally had 4 days ago. I got the results later in the afternoon and they marked it as abnormal because they still can't tell if there's a mass attached to the ovary or not. The report says "HISTORY: Possible left adnexal/ovarian mass vs. fibroid on CT".

My doctor sent me a note the next day saying "The ultrasound results still suggest the mass near the left ovary is most likely a fibroid extending out from the surface of the uterus, but the radiologist isn't 100% confident. I'm sending the pictures to our OBGYN surgeons to get their recommendation on next steps."

A few days later she got back to me saying:

I heard back from the OB GYNs who reviewed your images for me. They agreed this is most likely a uterine fibroid, but recommended we do a pelvic MRI to get additional information. I am sorry it has been so much back and forth with all these exams. I am sure this has been stressful. Usually pelvic ultrasounds are the best method to check on these things, but an MRI should give us more detail.

I then sent a message to my doctor stating that my aunt died from ovarian cancer and I was wondering if I should have the CA-125 test because of that and that I'm post menopausal and that they originally said this was a complex cyst. She got back to me with:

Thank you for that added history - you're right family history is important in this situation, but fortunately we mainly see the risk for ovarian cancer increasing with mainly with first degree relatives (so mom, sisters and siblings).

You're correct about the CA-125. I did ask the OBGYNs whether they think it's a good idea to check it in this situation and it sounds like the MRI is more appropriate. You're totally right that the CA-125 isn't 100% accurate. I don't think it would change what we do right now -we'll want to get the MRI regardless of the result.

So I'm not sure if I should be less stressed because they seem to be taking a somewhat casual approach to this by saying it's "most likely" a fibroid or upset that they won't do the CA125 test or take the fact that my aunt had ovarian cancer into play. I have to wait nearly 6 weeks to get the MRI.

What is your take on this?

[SuffolkJen]

Hi starrynight5626

Firstly I’m glad they still think it’s a fibroid but it would niggle at me that they still feel it necessary to do an MRIto be sure which you are going to be waiting 6 weeks for.

I do not agree that having a CA125 wouldn’t change what course of action they are taking. Surely if it was elevated they would do the MRI sooner but if it wasn’t it would give you some comfort during the wait 🤷🏻‍♀️

I’m pretty sure if you were in the UK you would have already had a CA125 done by now.

It’s about ruling OC out rather than ruling it in and personally I’d push for the CA125 asap.

Best wishes xx Jen

[starrynight5626 in reply to SuffolkJen]

It doesn't sound like pushing for it would do any good.

[Lyndy]

Hi Starrynight5626

Your Doctor sounds pretty human and understanding which is good.

However I would still push for a ca125… bloods are relatively cheap and quick so why wouldn’t they do one?

Six weeks for an MRI is a long wait for you but may be unavoidable if they want an obgynae radiologist to report on it.

Genetic testing is more relevant if you were to be diagnosed-my grandmother died of OC but this was dismissed when I went for testing. However I was positive for BRCA!

Very best of luck as you negotiate all this…what a stressful time! xx

[Emcee71]

Hi Starry Night

Gosh I do feel for you. IMO the MRI is the best way to tell them where this mass is coming from (though please read my story below!) and I agree you should have a CA125, however, CA125 can be raised for many reasons, including fibroids (and things like endometriosis).

When I was at your stage I was tying myself in knots because nobody seemed to want to be drawn on anything. I later realised that you are simply never going to get a formal diagnosis until they have gone inside and taken whatever it is out and biopsied it (mine was biopsied during surgery which dictated the course of the surgery. I also had a different test which was raised - a CA19.

I had letters after a TV scan referring to a mass on the right of my pelvis (10cm) and the left ovary could not be seen. Yet I could see with my naked eye that my pelvis was swollen on the left and the discomfort was on the left.

Then, 2 weeks later, I had a 2nd scan with a gynae who measured a 15cm mass! I thought that has grown fast. I queried it and did not get a clear answer. 'has it grown 5cm in 2 weeks? I exclaimed 'not necessarily' said the gynae. I was thinking they have been careless, they have made a mistake, they are going to open me up on the wrong side in surgery, etc. I can see now why this was. They will not be drawn on things until they have scientific evidence.

In my case, I then had an MRI because the big 15cm mass was possibly stuck to the colon, and a bowel surgeon would need to be on standby for my op if that was the case. Even after the MRI they were still unsure if it was stuck or not (it was, but it peeled off). I am not actually sure that the surgeon having looked at all the scans AND the MRI even knew where exactly the bigger mass was growing from/in before he opened me up to be honest. They sometimes just can't see everything.

After surgery, it became clear that I had a 15cm mass in the left ovary, and also a 10cm peduncular fibroid growing from my uterus, which was the mass seen and noted by the original radiographer.

Histology showed the fibroid was benign and the left ovarian mass was cancer. The cancer (Clear Cell) grew from untreated and undiagnosed endometriosis. My CA125 was raised, but that could have been from the endo. Or the fibroid. Then my CA19 was also raised.

I absolutely hear your fears and frustration and it doesn't help with the blood tests but you may just have to try and trust your team that they are trying their best to see what they can with imaging without / prior to surgery but they may not have all the answers until said surgery occurs.

Sending hugs

Emilyx

[starrynight5626 in reply to Emcee71]

Oh my gosh! That is EXACTLY the same case I have! They can't visualize my left ovary and they can't figure out if it's a pedunculated fibroid or a mass. The mass I have is only noted at 3.5cm, so nowhere near as big as the one you had, and the fibroid is only 1.9cm.

So why is it that they can't visualize the ovary? Because of the mass? So it took them a while to believe that something was wrong with you? How long did you have to wait for an MRI? Did you also have an ultrasound and CT like me but they couldn't say 100% what it was?

[Emcee71 in reply to starrynight5626]

So weird that is! I think either the fibroid was hiding the left ovary (they do float about on those stalk things - a few months before diagnosis I had a lump which would appear in different places and actually shot across my belly and disappeared the last time I felt it which totally freaked me out, I thought it was hernia at the time or a bowel blockage) or the tumour growing in and contained inside the ovarian sac was hiding the actual ovary? No it wasn't that they didn't believe anything was wrong, it was more that they wouldn't say what it was - ie cancer or not.

I think the MRI was around a 3 week wait. It was all dealt with quite quickly, it was post surgery that I had my long wait - before chemo (9 weeks).

Also, to confuse things further, I had uterine dysplasia so another concern was that I had borderline / early stage uterine cancer, which I did in fact also turn out to have (stage 1A) I had it all going on 🙃. Perhaps due to 2 masses and the dysplasia and the tests it was all a more concerning picture and they were able to hurry it up?

[starrynight5626 in reply to Emcee71]

Oh my gosh this is weird! I too had cervical dysplasia, but that was nearly 20 years ago. Back then the cells were ASCUS, so I had a colposcopy and a LEEP and the abnormal cells were removed. I guess that solved the issue because I haven't had any abnormal pap's since.

But I've never had any kind of issue that I know of that would have led me to think anything is wrong down there, unlike you who had a lump you could feel.

[Emcee71 in reply to starrynight5626]

Mine was uterine not cervical and I had a normal PAP earlier in the year. Not my place to say but I'd be pretty encouraged by the small size of the masses/fibroids/unknowns. It's amazing how big ovarian sacs can stretch and safely contain a tumour inside them, should there be a tumour, which of course we hope in your case it isn't! We're here for you whatever x

[starrynight5626 in reply to Emcee71]

So they ended up taking out your fibroid as well? They say those are always (well 99%) benign.

[Emcee71 in reply to starrynight5626]

Fibroid, ovaries (with high grade clear cell tumour inside one), uterus (stage 1A separate low grade cancer), fallopian tubes, omentum. Total hysterectomy.

[Emcee71]

Also PS I had a McMillan (cancer care) nurse at the post scans gynae appointment when I was told I would need to have a total hysterectomy and I believed that I was being given a definitive cancer diagnosis because of the raised CA19 and CA125 and the mass(es) on the images. But when I saw the surgeon a week later he said to me 'we don't know what it is until I get in there/ get it out'. I hope that makes sense. x

[hazelnut50]

Hello, Like others I am wishing you the best medical care on this potentially worrying journey. This can be a short or long road. So, please take copious notes and keep a journal. Second, I would make sure at this point that my drs are oncogyns and that I am attached to a well known cancer hospital or team closest to where I live and only those surgeons proceed with decisions and interventions. They are usually more trained and experienced in anything complex but also how to proceed with worrying gyn features. If you are already with such a hospital or team, then get a second opinion. Push for your markers, and other bloodwork to get a solid baseline. Reach out to ovarian cancer support groups for help. And take care of yourself in the meantime with a healthy diet, exercize and good sleep. Your body needs all these from you to stay strong. Build your army. I listened to good interviews with gynoncologist on ovarcome’s podcast in the USA. Lots of informed top gynoncologists discussing OC topics, screening, interventions, tests, signs and symptoms but also the importance of being followed by well-trained gynoncs and hospitals. I agree that time is of essence. And. Six week wait for MRI is too long when they have found suspicious mass/fibroid. And as others have said, they won’t know definitively until they go in and remove/test the mass and area to see what they are dealing with. To push for a more urgent response on test dates, you can perhaps do a research on pubmed or other reliable medical journal sites about diverticulitis and ovarian or other gyn cancer, looking for info on potential misdiagnosis, etc., and without freaking out send this research to your team bc you are “trying to stay informed based on your symptoms and tests so far.”. It is great that they are responding to your emails and questions! Hugs! Stay strong and focused! Don’t get too distracted by what you find on the “general internet,” no matter what, you don’t have the reserves and it doesn’t serve your best interest. 🌷

[starrynight5626 in reply to hazelnut50]

But the MRI SHOULD show if it is indeed a mass or fibroid, shouldn't it? Or are you saying that even after the MRI they will still have to go in and at least test the mass?

[hazelnut50 in reply to starrynight5626]

I don’t know the answer to that. When I had a uterine fibroid, it was always checked on an ultrasound. That was many years ago, prior to the current problem. With the current problem when they did the MRI to get a better look at the suspicious mass on the ovary, they still couldn’t tell other than a rating they gave to the tumor when the injection happened. That rating ORADS 4 was a further indication that there was some activity and surgery was needed to remove the ovaries and fallopian tubes. They found one type of cancer then with the rereading of the biopsy through a second pathologist, it showed a different type of cancer. More aggressive and more rare. Surprisingly cancer cells, not tumors, were found on the other ovary that looked “normal,” on the US and MRI. You’ll need the MRI as a next step and then they’ll hopefully get an idea of what is going on, but as others have said sometimes MRI isn’t enough or doesn’t always pick things up. Best to proceed with giving them as much research as possible to help get an earlier date for the MRI. And we are only talking about our own worst-case experiences, which isn’t meant to worry you further. Every situation is different. I’m rooting for you!❤️

[starrynight5626 in reply to hazelnut50]

I just got alerted to a note from the gynecologist. After my doctor messaged her about my issue and then my doctor said this:

Is an exploratory laparoscopy the only remaining way to evaluate this? Is there a role for CA-125 and CEA assessment to help decide if further evaluation is needed? Does she need to be referred out to Gyn Onc?

The responding doctor said this:

Assessment: 52yo with incidental finding of a pelvic mass, unclear if ovarian or uterine.

Recommendations for referring clinician:

I would recommend a pelvic MRI with and without contrast. It tends to be much better at delineating pelvic structures and her ultrasound and CT scan are non diagnostic. Feel free to re e-consult gynecology once the MRI is back if necessary.

So I guess my doctor did ask for the test but was told the MRI was better for now.

[Doggies221 in reply to starrynight5626]

Hi starry, a properly done MRI, with the correct protocol and sequences, should be able to identify whether or not a mass is suspicious and how suspicious. Trouble is, every place has a different MRI protocol and not every place does MRIs in accordance with the latest protocols such as ORADS. It’s ridiculous that lay people like us who don’t know about these nuances (who would know there’s a big difference between an MRI and an MRI on the same organ between different radiology practices?!) the quality of the MRI info highly depends on where you get it. Good luck!

[Snoozyhead]

A CT scan for an unrelated matter showed an unidentified soft tissue mass around 5cm close to my uterus. 2 weeks later ultrasound followed by MRI scan and it had grown to 8cm and was on my ovary. My CA125 was 37. Two gynaecologists assured me it was likely to be just a fibroid as my CA125 would be much higher if it was cancer. Fortunately they decided to operate to remove the ovary 3 weeks later by which time it had grown to 14cms. My CA125 was at this point still only 38! Surgeon assured me it was a hard fibroid, it was actually in my fallopian tube . 5 weeks later I was informed it was a high grade serous tumour and a week later a scan showed the cancer had recurred in my peritoneum, so stage 3C. In my case CA125 result was not useful at all but I was extremely lucky to have follow up scans and surgery reasonably quickly. I'd definitely push for CA125 to be checked and for MRI sooner than 6 weeks. Wishing you all the best. Good luck!

[Lizchips in reply to Snoozyhead]

My CA 125 never went crazy high. I would try to get a biopsy. There's other blood work indicators besides ca125. Just to be safe.

[wendydee]

if you log on to the Ovacome website (ovacome.org.uk) and look at their symptom checker, you can enter any symptoms you may have and print them out to take back to your doctor. It may hurry the process up a bit, if he/she has printed evidence of your precise symptoms. All the best….i began to feel increasingly exhausted (not just a normal tiredness) and that was what made me keep pushing for an early investigation. All the best.

[starrynight5626 in reply to wendydee]

I looked at the symptoms and I don't have any of those. I would have never been suspicious of anything if hey hadn't happened to catch this on the CT.

[wendydee in reply to starrynight5626]

It sounds as if your medical team know what they’re doing. I know it’s worrying to wait but if they’re not rushing things as an urgent priority it sounds reassuring. Take care of yourself and keep busy, try to think of things to do that distract you from worrying. All the best for the diagnosis.

[starrynight5626 in reply to wendydee]

I just got alerted to a note from the gynecologist. After my doctor messaged her about my issue and then my doctor said this:

Is an exploratory laparoscopy the only remaining way to evaluate this? Is there a role for CA-125 and CEA assessment to help decide if further evaluation is needed? Does she need to be referred out to Gyn Onc?

The responding doctor said this:

Assessment: 52yo with incidental finding of a pelvic mass, unclear if ovarian or uterine.

Recommendations for referring clinician:

I would recommend a pelvic MRI with and without contrast. It tends to be much better at delineating pelvic structures and her ultrasound and CT scan are non diagnostic. Feel free to re e-consult gynecology once the MRI is back if necessary.

So I guess my doctor did ask for the test but was told the MRI was better for now.

[wendydee in reply to starrynight5626]

It sounds like it. It really does sound as if they’re exploring the issues in your case.

[starrynight5626 in reply to wendydee]

I don't really understand why she says the ultrasound and CT are non-diagnostic?? Seems kind of silly to do them if they are such, when an MRI is diagnostic!

[wendydee in reply to starrynight5626]

I’ve no idea, I’m afraid. Maybe it’s a bit of “medical speak”? You could always contact Ovacome advisers on the email link on their website. They could possibly clarify things for you.

[Doggies221 in reply to starrynight5626]

An MRI is a more expensive test. They start w/ the cheapest first - ultrasound.

[Motiva]

I would have the CA125 measured too. Quick, minimally invasive and fast turn around time for results. The result would add to the diagnostic picture.

[Hidden]

Hi starrynight.

I am sorry to hear that you are going through this.

When a huge cyst was found on my left ovary, my doctor arranged the ca125 test for me straight away.

I am very surprised to hear that they haven't arranged that for you too, but I see you are in the US. I'm in the UK.

You can buy ca125 home test kits online. They seem fairly inexpensive to buy here, so is that maybe an option for you?

I've never bought one, so I don't know what's involved with it, but maybe it's something you'd like to look into?

[starrynight5626 in reply to Hidden]

Looks like you buy it online and it looks to be fairly cheap, anywhere from $40-$60, and then you have to send it to a lab.

[Hidden in reply to starrynight5626]

Could be worth it if you can't get any doctors to do the test for you. I presume your lab results will need to be interpreted by a doctor though.

If you choose to order one, I hope you can get some peace of mind from the result.

[Emcee71]

Because I had dysplasia of the womb (lining was biopsied prior to surgery) that would have turned to cancer if the womb had not been removed and indeed by the time surgery was peformed, it had advanced to 1A cancer.

Because my incredible gynae was pretty convinced that my single cyst was cancer?

My surgeon did the first surgery via 1 method and they did a frozen section on the 15cm cyst, which found OC, which then dictated the next course of action. He said this was to limit the time I was fully open, which would help me recover quicker.

I don't find it very helpful to discuss my surgery at this point. I've moved on to getting through chemotherapy and face my first scan since the op in 6 odd weeks' time, and I think that's enough. Feel free to question your own surgery but I think doing this to others could risk upset. We are all perfectly capable of asking our own questions.

I wish you well.

[Doggies221 in reply to Emcee71]

Thank you. Hope you’re doing very very well.