Borderline ovarian tumour previously removed - 25x15x10cm. New cysts found on remaining ovary.

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Hi, 

I've never posted on any type of forum before but I'm at a bit of loss here so here goes. 

I'm 23 years old. In early 2017 I had a massive ovarian tumour (25x15x10cm) removed via laparotomy, which destroyed my left ovary and Fallopian tube. It was extremely painful and I was over the moon to get the surgery overwith, especially when the omentum biopsy showed that none of the borderline cells from the tumour had been found elsewhere. I've been having regular internal scans and CT scans every three months. 

Now, my most recent CT scan has shown that two more cysts have formed on my remaining ovary in the space of 3 months. They are significantly smaller, the larger only being 4 x 5cm and the smaller 3 x 4cm roughly. I've had an emergency MRI this week to get a better look at the cysts and I'm awaiting a review appointment with my consultant to discuss the results in the next 2 weeks.

I'm devastated this has happened again, and I was wondering if anyone else might have had the same problem? I'm aware that these two cysts they've found are relatively small, although bigger than a normal cyst (up to 3cm not persisting for 2-3 menstrual cycles). However my problem is I've been told definitively if anything came back they would remove it straight away, along with my appendix to reduce as much mucinous tissue as possible. This means more surgery, even if it is only keyhole this time. That's bad enough, but I'm worried about this keeping happening. I was assured it was unlikely that anything would come back, and something has!! 

Does anyone else have problems with cysts and had to have an ovary removed? Will I end up having my other ovary removed if the cysts continue to keep growing? What does that mean in terms of early menopause? Does it sound like time to starting talking about protecting my fertility in terms of embryo storage, as me and my partner were hoping to have kids in a few years? I have all these questions and I haven't even gotten the all clear to find out whether these cysts are benign or something more sinister, and I'm trying not to panic about the fact that I was booked for an MRI a week after my CT scan results...

My head's swimming. Any thoughts any one has would be so much appreciated. It was awful going through the surgery and biopsy and waiting for results during my final year of University, but now I'm doing my PhD and I can't balance the stress of bad health and it...

Thanks, sorry for going off in a tangent

 

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  • Posted

    I should add also that I'm already experiencing pain from these small cysts, which I'm really shocked at considering the size in comparison to my first experience 

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  • Posted

    hi katie

    i was going to have cysts removed and potentially uterus which was 19mm thick. had been having severe periods for ages, excessive stress and ongoing dramas with thyroid/ hashimoto thanks to incompetent medics. 2 things were done as a trial - had mirena coil inserted for 6 months (removed because i didnt like it and job was done) and endo increased my dose 25%. all sorted. lining thinned almost overnight, cysts disappeared (one 2mm left). i am pre menopausal but you are very young. in hindsight i see the thyroid pattern in my menstruation history, and thyroid is stress linked (phd). once docs have yanked it all out have them keep an eye on your thyroid - if you have to have baseline tests taken privately for future ref. good luck - you/ they are on top of it early

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  • Posted

    Are you saying the cyst is borderline cancer? Did you have a CA 125 blood test done?

    It is common to develop more cysts after one is found. I believe there are a number of factors such as generics, high sugar diet and high estrogen.

    They must have burst and drained the cyst before removing it since that is a very large cyst for a laporascopy.

    I would cut down on sugar and stop eating processed bread which has high amounts of quasi-estrogen. I would also start taking Chasteberry supplements since it balances the female hormones that cause cysts and PCO.

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    • Posted

      Hi Lisa, 

      Yes I was told that it was a 'borderline' septated tumour following the biopsy, but they didn't class it as cancer. My CA125 levels were normal and I've been getting them checked every three-four months alongside my CT scans/internal scans.

      They didn't burst the cyst, I had a laparotomy not a laparoscopy (vertical cut up abdomen, about 7 inches long). They wouldn't burst it because they were concerned about releasing the cells. I think they would do keyhole to remove the smaller cysts.  

      I am also a type 1 diabetic so I eat very little sugar anyway, but I will try these supplements.

      Do you have any thoughts on the contraceptive pill? I was told that taking it would reduce the chances of further cysts happening, but I've read online that some people say the opposite. 

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  • Posted

    Hi Katie

    I am sorry to hear you are going through this waiting for result/info is really hard.

    I am on a Facebook group called Borderljne ovarian tumor/cancer there are lots of women on there who are going through similar issues having to make decisions about future fertility. Good luck with everything x

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