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."
So now what? Will they do some kind of biopsy or surgery? Are there any other options?
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starrynight5626
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This happened to me. I had a post menopausal bleed so my Dr referred me to gynae. I had a trans vaginal scan which showed a ‘mass’ on my right ovary. I then had a CA125 blood test which was 76 so cause for concern. This was followed by an MRI.
MDT thought it was more likely a fibroid but still called it a ‘mass’
I ended having having a bilateral salpingo oophrectomy and hysterectomy. Surgeon informed me it had been removed in tact and she thought it was a fibroid.
3 weeks later I got diagnosed with stage 1a clear cell OC.
I understand that sometimes the only way to make a diagnosis is via pathology after surgery.
My CA125 dropped to 8 after op and I went on to have 6 adjuvant sessions of carbo/taxol chemo.
I sincerely hope yours doesn’t turn out to be OC but if it does there WILL be a way forward to treat you. xx Jen
Thanks for commenting. So you had an MRI and they still couldn't detect it as a lesion, even though they called it a "mass"? Had you had a CT or ultrasound? Was the fibroid really a fibroid? Did they go in thinking they were just going to be that they were taking out?
I have had no symptoms of any pains or weirdness down there unlike you who had post menopausal bleeding. It was just the diverticulitis that was causing the pain and the "mass" was an incidental they found. This is what it said from the ultrasound:
" Left posterior upper body subserosal fibroid. The hypoechoic solid structure in the left adnexa may represent a pedunculated fibroid but not clear based on this ultrasound. On the prior CT scan there is a suggestion of a stalk connected with the uterus but this cannot be confirmed. The left ovary is not definitely visualized and therefore lesion arising from the ovary cannot be excluded. Recommend gynecology consultation to determine further course of action."
Would they give me the CA125 test first before doing anything? Although I've read that a high result doesn't necessarily mean cancer. And would an MRI be any help after the CT and ultrasound couldn't verify what it was?
All these terms are so new to me so I'm constantly Googling! How are you doing now?
Hi Starrtnight5626,I had an MRI & CT scan & they couldn't confirm so was brought in as a day patient for a laparoscopy. A few days later OC was confirmed. But fingers crossed its only a fibroid & you won't be joining the OC club, nobody wants to be a member of this club, wouldn't blame them. Best of luck x
Hi Pixie. I just got word from my doctor that after speaking with the OBGYN team that they still "think" it's a fibroid, but are now sending me for an MRI. However, it's a 6 week wait to get in! Just like it was a 4 week wait to get the ultrasound. I asked her what if it is still inconclusive and she said then they might talk about surgery but want to explore other options first and not put me thru unnecessary surgery.
What was the issue they were having with you where they couldn't confirm it was a mass? Did it look like a fibroid? Did they give you the CA-125 test?
Hi Starry, they never mentioned fibroid to me, so keep fingers x it will be that. My CA 125 was up, so that's why the tests were booked for me. My CA 125, was 125, so they told me most likely it was OC but had to do the laparoscopy to confirm. Did you get your CA125 checked?
I had absolutely no symptoms other than 1 isolated bleed no pain/bloating anything. My mum died of OC so I think this maybe helped in my getting swift attention.
I had an ultrasound scan which led on to immediate trans vaginal scan as they’d seen something. I then had an internal with consultant who said it felt ‘soft’ or ‘hard’ whatever the opposite of cancer should be but I honestly can’t remember what way round it was.
This was followed by CA125 which was elevated at 76 and MRI which still didn’t give a conclusive diagnosis. My womb lining was also slightly thickened so I decided to get the whole lot removed whether it was just fibroids or not due to family history.
I would definitely say your CA125 will be checked and yes it can be raised for fibroids/inflammation etc. Plus it doesn’t always elevate with cancer present 🤷🏻♀️ but it’s the standard investigation.
An MRI with contrast is probably more thorough than a CT scan initially but obviously in my case it still didn’t give conclusive results.
I had a CT scan after surgery prior to Chemo where there was no evidence of disease (NED) and that was repeated post chemo again NED.
I’m doing fine now I have my CA125 checked every 4 months and an internal examination. My last CA125 was 7.3. My bleed saved my life if I didn’t have it the cancer would’ve been found at a much later stage which unfortunately is very common for OC as it can be a silent assassin.
I had genetic testing and I was negative for BRACA 1&2 and Lynch. Clear cell is rare and is not normally genetic but they tested me because of family history.
I hope your mass does indeed turn out to be connected to your fibroid which they have seen. xx Jen
Thank you so much for your thorough report! With the radiologist and the OBGYN people saying that they "think" it's most likely a fibroid, it gives me more hope that that's what it is but I'm sure they have been wrong in these cases as well
My aunt died of ovarian cancer in her mid 60s. She wasn't one to go to the doctor anyways and it wasn't caught until late stage. I don't know if having a family member such as an aunt would raise my risk or not.
About 20 years ago during a pap smear I was positive for ASCUS (Atypical squamous cells of undetermined significance). I had to go back for a colposcopy and then they also froze the abnormal cells off. I don't know if that's of any significance of what they found now or not?
Hi Starynight5626Sorry to learn that you're having to navigate through this.
If you haven't already told your Dr of the family history of OC please do.
Both my paternal aunt and grandmother had breast cancer and after my OC diagnosis I discovered that I was BRCA1 positive, presumed to have been inherited from my Dad (my brother also tested positive).
Like you, my CT & US were inconclusive (and with a hugely elevated CA125) so I was recommend to have a hysterectomy (aged 46) and stage 3C was confirmed post surgery.
A pre surgery biopsy may he possible if a suitable area for a sample site can be visualised on a CT/US scan.
I'm coming up to 9 years since original diagnosis, with one recurrence and now 3years since that and symptom free.
Do you think if I tell them that my aunt died from ovarian cancer that they'd put more of a rush on things? I have that as a note in my history so they should see that, but they probably aren't looking for it.
In my experience, never assume that they've read every piece of previous medical and related history in notes. It may not speed things up, but if they haven't spotted if, knowing this may change their options / opinions in light of the family history.
Mine was similar, in fact my ultrasound was requested by my GP for fibroids. However, there was something there that the radiologist thought was needing further investigation.
I had a trans vaginal u s and a CA125 blood test (although these sometimes give false alarm/security and don’t always indicate ovca) then an appointment with the Gynae oncologist who operated within the next two weeks. He told me that the only way to be sure was to ‘have a look inside’.
It was a good job he did. Mine was slow growing but had spread to both ovaries and the omentum. He told me he thought it was all contained and that he thought he’d got it all out. Fingers crossed that he did. That was 22 years ago. Don’t be too scared of a radical hysterectomy, it wasn’t as bad as I feared. The post op check ups were reassuring and I believe it saved my life.
Hello Starrynight - sorry that you are going through all of this anxiety and confusion around what is happening. You've already had some good advice but thought I would share what happened to me. I had abdominal pains and my GP felt the mass in my abdomen. She sent me for a two week pathway CT scan. I was told that it looked like it might be cancerous but the only way was to remove it and do the histology on it. Get a CA125 done. This is not a rule out rule in blood test but it is a good indicator and should be done in the short term - by your GP. Results back within a day - this would really help inform how quickly perhaps - you should be referred for an MRI. If it was me - I'd want it out asap in any event (whatever it was). Please push for the CA125 x
Well my doctor doesn't seem to think it's a rush since she and the OBGYN team seem to think it's most likely a fibroid and the waiting time to get anything done is ridiculously long. I mean if I ask for a CA125 test is she going to think I'm jumping the gun? I would assume I could be sent to the lab at any time to get that done while waiting close to 6 weeks for this MRI.
I know - I hear you about jumping the gun. But its quite a straightforward test. The fact they are sending you for an MRI indicates they feel it needs to be looked at further otherwise they wouldn't send you. The fact you're waiting for it in the 'normal queue' also sounds positive as it sounds as though they are not worrying about it. But it doesn't mean to say, you are not worrying about it. It doesn't do any harm at all to ask about the CA125. x
I just sent a message to my doctor asking if I should have that test done. I also mentioned that my aunt died of ovarian cancer and if that brings any urgency into play. I doubt it will.
Its very relevant that there is a family history of OC. Hopefully yours is simply a fibroid and it is looking like that is what they think but its always best to be sure x
I heard back form my doctor last night and I was a little disappointed.: 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.
It does sound disappointing about the CA125 - but on the other hand, it also sounds like they think its more likely than not to be nothing cancerous. As if they thought that - you'd be on the two week pathway. Any further symptoms though and I'd keep on asking for the CA125. x
I had told you that the response from my doctor after I had the ultrasound was:
"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."
But a few days after that I got sent the note that was sent from my doctor to the OBGYN and on there I didn't see anything about how "they agree this is most likely a uterine fibroid". What my doctor asked was:
"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 OBGYN replied with:
"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."
There was nothing in the notes where anybody said it is most likely a fibroid. I'm wondering where she got the idea that "everyone agrees it's most likely a fibroid"? I guess they could have spoken on the phone, but I don't know.
This is the thing about having access to your medical info - you get pieces of information but you never know if you have all of the picture or not. The information is always in professional medical speak and often that is confusing as well. I would not know what a lot of that meant to be honest. I am not sure it is always helpful as you say - the Dr has informed you they think its likely to be a fibroid and you don't know what verbal conversations have taken place. They also have not replied to your Drs message about a CA125? So perhaps you don't have all of the information? I would get in touch with your Dr again and ask the questions. I am sorry you are going through all of this - its a really horrible time - all the uncertainty. x
Hi. Many many years ago when I was pregnant the gynecologist felt a tumor that felt cancerous when he examined me. He and the second opinion doctor I saw couldn't tell whether it was on my uterus or my ovary. Because I was pregnant it kept shifting position. So I had to have an exploratory laparotomy. All the doctor did was feel with his hand (trying not to cause a miscarriage which was all I cared about) and he could feel it was a fibroid attached to mu uterus. They need to figure out what you have. If it's even possibly ovarian cancer you want to get rid of it asap. I sincerely hope it's a fibroid!!!
Would they need to get rid of a fibroid, if that's what it is? Sounds like fibroids are benign and no need to get rid of them. The reason they can't tell if it's a mass or part of the fibroid is because they think it's a pedunculated fibroid, which means it has a stalk coming from the uterus.
Did they take anything out when they did the exploratory laparotomy?
No they took nothing out but a few years later I had a hysterectomy because the fibroid caused pain. It became attached to my colon. They don't need to remove it but it sounds like they could remove it without a hysterectomy, just the fibroid.
There is no need to remove it unless it’s the only way to be sure what it is. In my experience a complex cyst is not a fibroid. I’d get a CA125 and if you could, a PET scan. APET scan shows he level of metabolic activity in different parts of your body and where it’s abnormally high it’s usually cancer.
I heard back from my doctor last night and I was a little disappointed. She said she would be more worried if it was a first degree relative that had ovarian cancer and not a second degree one. Also said the MRI is more appropriate than a CA-125 test so they aren't going to do that either.
I recommend getting a different doctor. You may not have ovarian cancer but they need to rule it out for sure. I can’t tell you how many women, including me, get blown off or misdiagnosed by doctors. The mri is fine but maybe you could pay to have he CA 125 done. It’s not 100% accurate. About 20% of women with OC don’t express it. Mine has never been higher than 8. For others it might be elevated for another reason but it can’t hurt to get it tested.
I mean I really like my doctor. She's been great with every other issue I've had. I just hate that I've already had 2 imaging tests done and they can't say for sure what is going on.
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