Large complex ovarian cyst

[kym46]

If anyone can give me some advice I'd be very grateful!

I was recently diagnosed with a complex ovarian cyst measuring 5.5x4x5cm. With an endometrium of 1mm. In the left adnexa there is a multiloculated cyst with thickened septations calcification largest 5mm. Also some small calcifications visible within the thickened septations. But no definite blood flow was seen. Some of the loculations appear elongated with folds visible and possible hydrosalpinx component. My right ovary is fine. And kidneys are normal in size and appearance. No pelvic free fluid was seen. Over the course of four months there were changes within the cyst (these results are the most recent). My bloods are all normal and there's no history of ovarian cancer in the family.

I was put on the emergency surgery list for a laparoscopy. Once at the hospital they said they'd like to remove both ovaries and my fallopian tubes as a preventative measure. However, they realised I had a large anterial spinal fusion scar on my stomach and decided to cancel the procedure due to it now being a more risky surgery--due to possible internal scar tissue sticking to organs and the bowel.

After researching, I came across a new study at Imperial College London re an MRI tool being used to detect if a cyst is benign or cancerous with up to 90% accuracy. For some reason, it was marked "do not send for a CT or MRI scan" on one of my medical records. So, I've been pushing to get an apt with the consultant Mr Joseph Yazbek in London who was running the test and am hoping that happens soon.

Bottom line is, I'm scared to have the surgery due to the scar and risks of that. Also, I don't want to have everything removed (both ovaries and fallopian tubes) when there's still a chance the cyst is benign (bloods normal, no blood flow detected, and no family history). But I feel like there's a ticking time bomb inside me.

Has anyone else heard about the study and MRI tool?

Can anyone give me some advice?

Thank you all in advance and sorry for the long winded message!

[Hope4allG]

please remove IT ASAP.

[kym46 in reply to Hope4allG]

Thanks... I know it needs to come out but do I then really need everything out as a preventative measure? Really not sure what to do.

[Boot1947]

Hi Kym46, Although I don’t know about the study, Mr Yazbek, who did my original hysterectomy for OC, is incredibly experienced at reading scans and also entirely lovely and unpatronising. I hope you manage to get an appointment with him.

Best wishes, Deb x

[kym46 in reply to Boot1947]

That is reassuring and so nice to hear. Thanks so much! xx

[charlie12]

Hi Kym

I had an incorrect diagnosis as a result of MRI findings.I was told that it was benign and it was not, it was borderline. Decisions were made that were incorrect as a result.

Imaging is just that, nobody can tell you with 100 per cent accuracy what is inside you until it is removed and tested by a pathologist. My advice would be to get that mass out ASAP.

Many people have multiple surgeries via the same scar and your previous surgery sounds huge. This is rough at the time but you don’t want to mess around with this disease.

Take care xx

[kym46 in reply to charlie12]

I'm so sorry Charlie... you must have gone through a terrible time. It's all so scary. I'm just so nervous and just don't want to make the wrong decision. I really appreciate your advice.

[Cooperkia]

Could the ‘not send for MRI’ be due to the spinal fusion surgery , do you know if they used any metal fixings? If so, that would most likely be a contraindication to an MRI. Not sure why it would say no CT though?

[kym46 in reply to Cooperkia]

No metal was used for the fusion. In fact, I had an MRI for something unrelated a few years ago. I really don't know why they don't want to give me an MRI... maybe it's down to cost? Or maybe they know it needs to come out either way so it's not worth it? Just not sure.

[Cooperkia in reply to kym46]

Fingers crossed you get your reply from the study lead clinician soon.

[SUE7777]

Hi Kym, I would go along with what the professionals say regarding removing tissue. I would also keep pushing for an appointment with Mr Joseph Yazbek he looks top of his game and a safe pair of hands. All the best Sue xx

[kym46 in reply to SUE7777]

Thanks Sue. I feel like I'm being rushed into surgery without understanding all the risks/benefits. I noticed on my file a box was checked saying "No Pre Op Assessment now below 16 years old" Clearly a mistake--I'm 53! But no one was contacting me and explaining everything. I had to keep calling and push for a discussion with the surgeon here. In fact, the surgery was scheduled for the 12th May but a meeting with the surgeon was arranged for the 13th May.. not very helpful. So I had to say no to the surgery on the 12th. I'm also waiting for an apt with Mr Yazbek in London. I'm just worried that by waiting, I'm putting myself at more risk.

[SUE7777 in reply to kym46]

I totally understand your concerns, the trouble is you don't know how long you'll have to wait for an appointment with Mr Yazbek who is obviously a very busy man. The surgeon would have probably spoken to you on the day of surgery but that's not guaranteed, it's very difficult from our perspective to make the right decision. Just go for the consultation on the 13th and talk it through. All the best Sue xx

[kym46 in reply to SUE7777]

Yes, very true. Thanks so much Sue. x

[SUE7777]

Good luck, you need to feel confident about things. Sue xx

[SJC21]

I am 12 day post op (radical hysterectomy on two week pathway). Had a Granulosa Cell tumour removed with one ovary in 2015 and just had a borderline cyst spotted on an MRI (full results pending). I still don’t know if my recent cyst is cancer but in my experience of this disease quick action to surgically remove is key to successful treatment, I personally wouldn’t take the risk. Good luck with everything. Xxx

[kym46 in reply to SJC21]

Thanks for responding. I hope you have a speedy recovery! I'm sure it's been an incredibly stressful time. I know I need to get it removed. I guess the big question is if I need to remove everything right now when at the moment, there's no real indication it's cancerous--no blood flow, no family history, normal blood work. xx

[SJC21 in reply to kym46]

I know bless you it’s so hard especially as you feel that you have to ultimately make the decision. I have no family history and my blood work had always been fine. The first tumour for me was cancer but only stage one with low chances of recurrence but I would be monitored for life due to the rareness of GCT. This new cyst had even there for over a year so I was happy when they opted for a full hysterectomy. It’s totally about weighing up the risks for you. They normally only opt for a more major surgery if they think you need it but your right to question it. Good luck xxx