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Advice needed

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I have a 11cm cyst on my right ovary - which has a solid part as well as fluid to. 

I've had ultra sound, ct scan and MRI scan. 

My consultant/surgon called me today and they are still not sure even with having my MRI results so they have had to take it back to the cancer team which should of been last Friday but because we had lots of snow it didn't happen so it will be talked about this Friday and my consultant will call me Friday afternoon to let me know what they have said. 

I asked if we looking at cancer and he said it's unlikely and said all my bloods are normal. He said that if my bloods were not normal then he would do the operation as emergency next week. 

Has anyone experienced this before?? I am so worried! I am only 23 years old.

So the cancer team will tell him if he can go ahead with keyhole or not. 

0 likes, 33 replies

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  • ange34
    ange34 Guest

    Posted

    Hi I am sorry that you are having to go through this. The waiting for scan results and MDT meetings is really difficult. Was the blood test you had a CA125? This is normally used as a marker to indicate something is not ok. I had my operation five weeks ago, my CA125 was elevated to 211 and I have just had confirmation that my mass wasn't cancer but a boderline ovarian tumour . It is good that they are discussing you at the meeting but remember it is only precautionary . I won't say try not to worry because i know that it is not possible but remember Ovarian cancer is rare especially in someone so young. Good luck with everything x

    • Guest
      Guest ange34

      Posted

      Hey, 

      Thanks for the reply! Yes that was one of them. I had other tumor markers blood tests too. Which all came back within the normal range. My CA125 was 25. 

      How did they do your op? Did they just take your cyst ? As if they do mine open surgary they are taking my ovary and the cyst- but not sure why that is.

      Did they take yours to the cancer team MDT? Was your cyst fluid filled and solid ?? 

      That's great it's not cancer!! How old are you? How big was yours? 

      It just been hard as i have known I've had this cyst since the 1st weekend of January, so it's been ages. It's just so hard not to worry and everyone around me is getting fed up of me worrying and overthinking it all. 

      Sorry for all the questions 

      X

    • annmarie_24121
      annmarie_24121 ange34

      Posted

      Ange34 thank you for sharing. Can I ask how large was your cyst? 
    • ange34
      ange34 annmarie_24121

      Posted

      Hi Ann Marie my cyst was 14cm , my gynocoligist saud it was like a football!

      Have you been diagnosed with a large cyst? If you have any questions please feel free to ask, i know it is a worrying time. X

    • annmarie_24121
      annmarie_24121 ange34

      Posted

      My transvaginal scan was reviewed by my Dr and two cancer specialist and they all say 2cm dermoid cyst. I went into my gyno since I have been bleeding for over a month. They also found a fibroid in my uterus which was causing me to bleed. She will remove this as well during the surgery. My concern is I have been reading all over the internet about how if you have fibroids and are bleeding your CA125 can come back elevated. Test results due back tomorrow. I'm just hoping that two different specialist are not wrong. I have been a nervous wreck. Any advice is greatly appreciated.

    • ange34
      ange34 annmarie_24121

      Posted

      Hi sorry you are going through this, the waiting for results is really hard. Try to keep yourself busy tomorrow, I emptied a lot of cupboards. From what I learnt your Ca125 can be elevated by Lots of things like endometriosis or even having an infection. When you get the results if the number is above 35 that will determine what kind of surgery they do and how quickly. I hope everything works out ok and your result are good tomorrow, please let me know how you get on, sending positive vibes x
    • ange34
      ange34 annmarie_24121

      Posted

      Hi just wondering how you got on today, did you get your results back? X
    • annmarie_24121
      annmarie_24121 ange34

      Posted

      I did not, not yet so another sleepless night for me, thank you for asking though.
    • ange34
      ange34 annmarie_24121

      Posted

      Oh no fingers crossed you hear today and that it is good news. Try to do something nice for yourselve today you deserve it x
  • ange34
    ange34 Guest

    Posted

    Hi don't apologies if is natural to worry until you know for sure what it is. My case went to the MDT meeting twice and as if was over Christmas and the new year things were slightly delayed. Mine was 14x10 cm and weighed 1kg. My Ct scan showed a potential problem with my liver that concerned them so i then went for an MRI which showed the liver was a hermangioma (probably had from birth so not a problem) the MIR picked up anoth problem with my peritoneal (after surgery they realised that this had been damaged when I had c-section so not cancer spread) so all that in mind they decided i was high risk of having a malignant mass so my surgery was based on that fact.

    I had a laparotomy vertical incision where they removed everything (ovarian debulking) I had completed my family and don't forget I am 47 so very different. Try and keep yourself busy. I went to see a herbalist she made me a tea which kept me calm and helped me sleep, I also got some bowel/digestion tincture and a post operative one which stopped infection. Sending a big hug and lots of positivity xx

    • Guest
      Guest ange34

      Posted

      Thank you. I am just worrying so much they will come back as say it's cancer and they need to do open surgary. 

      My consultant said it's unlikely and all my bloods are normal x 

    • Guest
      Guest ange34

      Posted

      Im only 23 years old so it all worries me nore. Did they just take cyst from you? As they said to me they will take cyst and ovary if the do it open. I'll find out tomorrow afternoon after the cancer team have had there mdt 

    • joyce48302
      joyce48302 ange34

      Posted

      Hi, 

      I’m new to the forum and i just wanted to say that your story has been very positive for me. I’m experiencing the same thing with surgery lurking in about a month for a 12x12x9cm endometrioma and although they said they’ll do it laparoscopically there might be a chance of conversion to open surgery and a removal of my ovary and tube. I am super worried about the pain after if it’s a vertical incision and losing an ovary as I’m only 27. I’ve been having insomnia for the past week!! 

    • ange34
      ange34 joyce48302

      Posted

      Hi Joyce I am glad to hear you have found some comfort in my story. I too was very worried about having 'open surgery' I just want to reassure you it is not as painful as I thought it would be asking as I keep up with the pain medication, a positive on this type of surgery is you are less likely to try and do things before you are healed inside because you have the discomfort of bending which stops you from doing much for the first month. I hope they can manage to do your operation Laparoscopic but if you do need a laparotomy you will be ok. I use yoga nidra for sleep you can find it on you tube it helps me if I am struggling to sleep. Sending positive vibes x

    • joyce48302
      joyce48302 ange34

      Posted

      Thank you for your comforting words! I was wondering if you had staples you had to take out or was it internal stitches? Did it hurt if you had staples that needed to be removed? 
    • ange34
      ange34 joyce48302

      Posted

      Hi yes I had external staples and internal stitches. The external staples didn't hurt at all just a funny feeling, j had taken pain relief before I went to the appointment x

    • joyce48302
      joyce48302 ange34

      Posted

      Thank you so much for your reassurance! I literally was thinking that the incision was going to be a nerve type of pain and I wouldn’t be able to do it! Was your cyst an endometrioma as well? 
    • ange34
      ange34 joyce48302

      Posted

      Hi Joyce no my cyst was initially thought to be a simple fluid filled one, it had moved away from my ovary so didn't show up on the first scans x

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