I'm so scared

Posted , 5 users are following.

Hello all I'm very new to this but desperate for some support. I'm 34 yrs of age, work as a carer and about to begin a degree in nursing. Three weeks ago I had an MRI for a suspected slipped disc. That was confirmed as well as a cyst on my ovary, I had an ultra sound yesterday which confirmed a 5cm cyst on my right ovary. Only a few hrs later my GP called saying that he wanted to arrange urgent blood tests this week and an immediate referral to the Churchill hospital. He mentioned that the cyst was lots of cysts within a cyst. Then he mentioned the C word and I just crumbled. I can't tell you how petrified I am. I've not slept and burst into tears ever 5 minutes. My appointment should be within 2 weeks. I just want to know now. Is this likely to be cancer. Any guidance or advice would be so so welcome. Many thanks

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  • Posted

    Hi,

    I know this sounds scary, but I think what you have described sounds fairly standard. I am not medical, but I think the cysts within cysts (daughter cysts) is a good sign. The blood test will be CA125 I imagine which they do to get a likelihood of ovarian cancer. But you will read on here that a raised result is not conclusive by any means, as lots of things can affect it including having a cyst. It's just an information gathering exercise I think. The vast majority of cysts are benign ( have a look on the NHS website) so try not to worry. They have also found it when it's quite small so if they need to remove it I imagine it may be keyhole (laparoscopy) rather than a bigger laparotomy. 

    I know it's easier said than done but try to stay positive. If you read some of the medical sites the statistics are hugely reassuring. They say things like 99% are benign. The likelihood of cancer is even less if you are pre menopausal. I know statistics aren't everything, but I do think they help to put things in context. Of course until you have had all your investigations done it will be a niggle, but medics know what they are doing, and you are in the system now. Really hope everything works out, and good luck with your training. X

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    • Posted

      Thank you so much for your kind message. It's really reassure me. I know it's sounds cliche but you really feel like your the only one. I think just to hear the C word yesterday absolutely petrified me and I've crumbled. I'm quite a worrier at the best of times and having had quite a lot of bad luck in the past, I find it very hard to 'look on the bright side'. It's the waiting. I want answers and I want them now. I know that's not possible and I realise that sounds selfish as there are others in a far worse position than me.

      I can't thank you enough for your reply and kind words. Have you been through anything similar? Sorry I don't wish to be nosey.

      Best wishes

      Vicky

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    • Posted

      My cyst was found by ultrasound on 18 January. At that point it was 28x24x20cms so already huge. They did bloods and an MRI and I had an urgent 'two week wait' referral to a gynaecologist. All came back ok although between the ultrasound and MRI it had grown some more in just 28 days. My op is scheduled for next week but having just attended my pre surgical assessment the nurse said my file had me down for a total hysterectomy and both ovaries removed. This is the first time this has been mentioned so I have requested and been offered an extra appointment with the Consultant later this week. I am a bit confused why they have decided on this course, and also why they didn't tell me. It was only the nurse mentioning it in passing which highlighted it.

      Anyway, from finding it to having surgery will be just over ten weeks, and it is  over nine months since I first had symptoms, which unfortunately were not picked up on. It is a bit of a waiting game, but I think it is easier to handle once it stops feeling urgent. I am in a lot of discomfort, and I do look full term pregnant now, as it extends up to my rib cage. The consultant said its like carrying twins the size it is now. 

      I really hope you get your results back quickly, as not knowing is hard. Best of luck Victoria 59764

       

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    • Posted

      My goodness that is huge you poor thing. You must be so uncomfortable. I'm unsure as to why they want to perform a hysterectomy too other than as a preventative measure. I'm sure that's the reason, however it is a large operation with a fairly long recovery time I think. It's quite bad that this hasn't been mentioned to you until now. I hope you get some answers soon.

      Best wishes ( your in my thoughts)

      Vicky

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  • Posted

    I think you in this case will just have to be patient in waiting for all your results. I had a cyst and they did blood test to see if it was elevated due to possible cancer. My test came back fine. From what I have heard the blood test are pretty inconclusive. Many come back high with no real reason. I would imagine you will be scheduled to have it removed and that is really the only way to know for sure. Hope you feel better very soon.
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    • Posted

      Thank you so much for the reply. I'm probably one of the most least impatient people you could meet but after speaking to the doctor yesterday I've become utterly desperate. I know it's not a case of a magic wand but in all honesty I've never felt so scared in all my life. It was just so unexpected. Thank goodness that your ok.

      Best wishes

      Vicky

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  • Posted

    I am the same way. From the time they found my cyst last April until the test came back after my surgery it was like 5 months and trust me it was a long wait. I am sure you will be fine. So may women have cyst and few of them end up actually being cancer. Try to stay on the positive side!
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  • Posted

    Hi  Victoria

    Your story sounds very like mine, so I hope this is reassuring. I had an MRI before xmas for back problems and a 5-6 cm cyst showed up. No symptoms that I 'd been aware of. A pelvic ultrasound showed a 6 cm complex cyst (i.e. with solid elements) including a daughter cyst, so I was referred on the 2 week fast track. The GP assured me it was very likely to be benign, but as I am 51 and the cyst complex they would investigate. Blood tests were CA125, CA199 and a couple for inflammation, all came back normal. Then the gynae sent me for another MRI to confirm the findings. All very fast. I was told it was probably a dermoid cyst, 99% of these in adults are benign. I was also told that they would remove it, probably within the month, along with 1 ovary.

    Then everything slowed down and an appointment 4 weeks later told me the cyst was benign dermoid, as expected.I think I should have insisted on hearing that sooner than 4 weeks, and told the consultant so when I saw him another 4 weeks later! Anyway, alarm over, back to good old NHS slow lane and I'm waiting for a date for surgery. Given my age and perimenopausal stage we have agreed he can remove both ovaries to avoid any future problems. But they can remove a cyst and leave the ovary intact sometimes, and will probably recommend that for you given your age. In any case you can still conceive with 1 ovary. It feels horrible to be thrown into cancer scare without any warning so I really feel for you. But there's a huge chance it will be fine, and they are just being careful.

    All the best, Mary

     

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    • Posted

      Hello and thank you so much for the reply and reassuring words. I'm so sorry you've had this worry too. I can tell you I've never been more scared in all my life. Can I ask? I've been told I will be seen within two weeks. What will happen at that initial appointment? The GP didn't really explain and I was finding it so hard to process what he was saying to me. After joining this forum this morning I really feel a lot more settled and reassured, however every few minutes it hits me again and my head is bombarded with what ifs! I'm a single mum and was just about to begin a degree in nursing ( ironically). Who knows if that will happen now. The worst thing is that my youngest daughter (14) was off school yesterday with a sickness bug. I had no idea that when I took the call from the GP that she was listening. She heard me crying and the word cancer. I so wish she hadn't heard. She's been sent home from school today for feeling sick, however I know it's because she's worrying about me. Should I make the school aware?

      Anyway I'm sorry for bombarding you with questions and droning on. I know it sounds silly but although I have amazing support from friends, family and Partner I still feel so isolated for some reason.

      I can't thank you enough for your reply.

      Best wishes

      Vicky

      Xxxx

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