Do external ultrasound scans (and those who interpret them) often miss early gynaecological cancers and endometriosis?
The gynae doc (not oncology or endo expert) who read my scan said 100% not ovarian cancer.
How can she be so sure???
I’m sure there are people on here who have been misdiagnosed. Or just not diagnosed.
Btw when asked directly, she said possibly could be endo but because of my age (52 but still having periods) they wouldn’t do anything if it was that.
She said it isn’t normal to have pelvic cramp daily but couldn’t say what it was only that it wasn’t OC (not sure she should claim 100% certainty on that).
No further forward.
She also said not to repeat ca125 which has been 58, 65 and 48 respectively.
GP seems to be leaving it at this.
I also thought because bladder is close to uterus that there was a connection because cramps seem stronger after passing urine and lying down.
Anyone have any ideas?
I’ve to hand in urine sample but it’s not an infection I’ve had since February.
I'm sorry to hear that you're having a difficult time and haven't yet been able to find out what's causing your symptoms.
It could be helpful to have another discussion with your GP about what's happening and how your symptoms are affecting you. You could keep a diary of your symptoms before the appointment, to help your GP to understand what you're experiencing. You can ask your GP to refer you to another specialist, as it's important to find out the cause of your symptoms so that it can be managed. There is more information about second opinions at healthunlocked.com/ovacome/...
If you don't feel comfortable having another conversation with your existing GP, you could ask to see another GP at the practice. If you aren't referred to a specialist, you could also get in touch with the Practice Manager to explore how the situation could be resolved.
I hope that you can get some further advice soon. If there's something that we can help with, or if it would help to talk anything through, please get in touch with our Support Service on 0800 008 7054 or 07503 682 311 or at support@ovacome.org.uk.
I think it may not be useful to question their skill.... they may be right that it doesn’t look like OC . The trouble is that if there is a mistake and you do have OC the delay in diagnosis could be very bad for you. I would feel like discussing this with your GP, maybe asking for a second opinion. You are right to want answers... if it isn’t OC what is it? Until you know don’t give up xx
If it’s any help, I had trouble fully emptying my bladder during the beginning of COVID. I called my internal medicine doctor who told me to see my gynecologist. My gynecologist did not see me and instead referred me to urologist. The urologist ordered an ultrasound of my kidneys which just happened to show a large mass on one of my ovaries. The urologist told me to see my gynecologist, who ordered a transvaginal ultrasound. So in my case, an external kidney ultrasound uncovered what turned out to be OC. Best wishes from Louisiana
Sashay
Thanks Sashay. Sorry you had that news but at least it was found. It’s scary how things are missed or incidentally found. Take care 🙏🏼
Hi Kichi52Sorry to hear you are going through this . I had surgery in September to remove a very large 14cm dermoid cyst and my ovaries which put me straight into surgical menopause. Prior to surgery I had 2 ultrasounds which confirmed dermoid cyst on right ovary and simple cyst on the left.I was told this was benign but needed to be removed due to symptoms. when the histology report came back 3 weeks ago I was diagnosed with squamous cell ovarian cancer which is a very rare type . To say I was shocked was an understatement. Thankfully it was contained within the ovary / cyst so had a ct scan yesterday and if that’s clear they will monitor me closely with no need for chemo.
Prior to surgery I was bloated peeing very often and had a lot of pelvic pain. My ca125 was 70 but the gynae oncologist said that can be raised for many reasons other than ovarian cancer .
If you are unsure I would say go with your gut instinct and get a second opinion.
I am sorry to hear you are going through this. The ultrasound did not pick up my extensive endometriosis or my ovarian cancer. I was told i had a dermoid cyst and it wasnt sinister. My intial ca 125 was 34. I had bloating and extreme period pain. I also left ovarian pain this is where the cyst was. I ended up having a hysterectomy through my private health care insurance. The dermoid cyst was a grade 1 endometriod cancer. They also found i had stage 2a ovarian clear cell carcinoma grade 3 cancer in my left ovary and on my left fallopian tube. They said this was incidental finding and it is very rare. The endometriosis was only discovered upon surgery.
I ended up having a second debulking surgery 8 weeks after my hysterectomy. Thankfully no cancer was found in this histology. I am currently undergoing chemotherapy given the high grade of the clear cell cancer.
I only recently found out that my Ca125 was 54 just before surgery. Although this isnt high it was still elevated above the normal range of 0-34.
The ca125 can be confusing isn’t it and so variable. My gynae was adamant she saw people with ranges in the 1000s and not at 65 but I know from speaking to real people who have OC that it’s not a good indicator and some people’s are within normal limits ie less than 35.
I do think she was wrong to rule out OC 100% on the basis on one clear ultrasound not conducted by an endo specialist or oncologist.
Get second opinion if any type of cancer is present it does need to be addressed asap. you have to be your own advocate. My ca 125 was 57 and my GP couldn't believe when the staging came back as 3c ovarian cause the ca was so low. Some of us just present different but something is going on.............good luck and let us know what happens
Thank you summergold. I’m inclined to agree. Something is going on. It could just be innocent but then what is it?
Something is causing it but I can’t pin it down. Gynae says it’s not commonplace for people still having regular periods to have daily uterus cramps but could see nothing on the photos of the USS.
It’s weird that I really only feel it when I’m lying down which I do all night in bed.
And it’s worse after I pass urine.
The symptoms of everything overlap with everything else. 🙀
Hi Kochi52I would suggest a second opinion because while your ca125 isnt too deranged it's not within normal limits and you still have symptoms.
If you can afford to, go private for the second opinion. I was initially referred to a gynaecologist at the local hospital after my scan, which showed bilateral masses. They decided they wanted to watch and wait. The biggest mass was 10cm. I wasn't happy to wait.
I got a referral from my GP to see a gynaeoncologist privately (important they specialise in oncology too) and they couldn't believe I was not being investigated further.
The private doc got an MRI and CT sorted within a week, they thought one mass was cancerous the other borderline, and fast tracked me for full staging surgery. My ca125 was only 44. Both masses turned out to be borderline, which was great news.
If you don't have private insurance an appointment for initial private consultation is about £250. If they want you to have further scans and you cant do privately they will refer you back to the NHS... possibly in their own NHS clinic. But least you'll now one way or the other if you do actually need more investigations. If a gynaeoncologist isnt worried about it then would take their advice. Let us know how you go.
Thanks figrollI’m not happy with the gynae’s diagnosis because she said she was 100% certain it wasn’t cancer - and it likely not but I don’t trust that 100% statement she made on the basis of one USS.
I will write to GP so that I can be clear and succinct that I would still like to know what is causing this and the raised cancer protein marker. If it’s not satisfactory I’ll consider a private consultation but couldn’t afford scans on a nurses pay!
I'm a nurse too! Yeah, the scans are exy, but if your private cons says it would be worth getting a scan at least you can go back to your GP and get the scans done through the NHS. Did you have transvag scans?
Please push for more tests... I had an internal and external ultrasound.. which showed nothing. Even after a gynaecologist removed my ovaries she told me I was stage 1 ... however after seeing a Oncologist Gynaecologist.. he informed me I had stage 3C OC... if you feel something is amiss... keep looking till you get an answer.. Hope everything works out well for you x
I don't want to worry you, but when I was referred for an ultra sound scan and an appointment with a consultant gynaecologist at my local hospital, the US appointment had been booked for 7 weeks away, despite my GP marking it urgent. I saw the Consultant first, who examined me internally and externally and said he did not believe anything sinister was going on, that the swollen lymph node in my groin was likely attributable to something not gynaecological, that my CA125, when the GP checked it, had been 84, and it had already fallen back to 76, so it definitely wasn't anything sinister and it was safe to wait for the US. So I did - as soon as the US was complete, I knew the senior radiology doctor who did the scan had seen something and she wanted me to have a CT scan right then and there (it was 7pm, which was the only reason they could do it immediately) - otherwise I'd have to wait for an appointment for one. I had it done then and that revealed a lot more, only she didn't tell me what.It turned out I had OC Stage 4b - the lymph node was cancerous, along with both ovaries and there was a tumour attached to the back of the pelvic wall. And all of that was missed completely by the gynae consultant...
It seems like your US was clear, with no signs of anything suspicious at all (unlike mine) so it probably is nothing - what worries me is the raised CA125. Whilst that is not a reliable guide necessarily, and it can rise for other reasons, it's something, and yours is slightly raised. I'd also add I had no cramping at all, in fact, no symptoms at all, other than 'irritable bowel' which I'd had for some years, so the cramping is not necessarily significant of OC. The only thing was me discovering a large, swollen lymph node in my groin - I wasn't even sure how long it had been there, its not an area you examine closely usually, is it...
If you are still concerned, ask for a CT referral which typically reveals a lot more if there are problems, and another CA125 check - if that's returned to normal, then you probably don't need a CT.
Thanks Miriam 🙏🏼The gynae said not to repeat the CA125 as it wasn’t helpful. However I don’t agree because I still have something going on in there somewhere. Plus I took silent umbrage in the fact that my age stops any further endo investigation. Made me think she wasn’t open to being wrong ever which is not a good thing.
Kochi52: I had an external ultrasound done after I started menopausal spotting. The gyn tried to do internal ultrasound but it was too painful for me. The results of external ultrasound showed no cancer, but she said if I started spotting again She would do a DNC. I started spotting and she did the DNC, which revealed I had endometrial cancer.
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