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New here - terrified about test results

Hi everyone, newbie here.

Not sure where to start.... So I am 29 years old, I have 4 young children (11, 8, 6 and my step daughter is 3). Around Christmas time I started to get pains in my left side, it was a familiar pain as 6 years ago I had my right ovary removed due to a large cyst. So I went to the doctors at the end of January and she referred me for an ultrasound and did blood tests.

At the ultrasound the sonographer said I have a tumour on my remaining ovary and I would need an MRI. Soon after I got a phone call from the doctors to say my ca125 was high at 306 (it was 60 when I had the previous cyst) so they referred me urgently to the hospital who did an MRI last week, a colposcopy and more blood tests and I am currently waiting for the results.

I hope it's ok for me to be here as I haven't been officially diagnosed as yet but I am terrified for the results and I am driving myself mad with all the possibilities, I don't know how I will cope if I have to stay in hospital for surgeries or chemo, my partner works away and I just don't know how I would cope. I don't really have any questions as such I just wanted to get my thoughts down and I know everyone here will have had the same experience, the waiting and not knowing is just horrible.

30 Replies
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I know this fear your experiencing! Let's hope and pray if it is the C word ...it's caught at an early stage.my ca125 was in 1400's. At stage 111c.when do you get your results?

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Hi Cynthia, I'm still waiting to hear when they want me to go back in for the results, they said they would wait for them all to be ready before calling me back for an appointment.

It's just the waiting isn't it, every day seems to be dragging and I feel like I've been waiting for a very long time even though I know this has all happened quite fast.

Thank you so much for your reply :)

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Hello - waiting for test results is never easy but don't let your imagination run away with you. If the worse case scenario emerges and you have to have chemo then your family and friends will surely rally round, you will be surprised how resourceful they all become, and of course you will cope, being a mother you already have the hardest job in the world.

Once you get the results you will be able to make plans, in the meantime don't Google, as it will scare you rigid and a lot of what you will read is out of date. Good Luck, let us know how you get on. Take Care xx

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Hi Lyn I have been stupid and googled as soon as I found out the first blood results, I knew it was much higher than it was last time so I wanted to get an idea of what it meant, I have realised it was a bit of a mistake as it all point to one thing. I am trying to hold out hope but I do have this terrible feeling that it's much worse than last time, that could well be paranoia though!

Thank you so much for replying xx

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Hi ya - do please also be aware that a raised CA125 is not a guarantee of cancer. It can be raised for several other reasons. Your team will take on board all of your test results including CT scans to gather a complete picture as to what is actually going on.

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Hi lyn, I know there's a possibility of it being raised for other reasons, it was raised 6 years ago when I had my other cyst but only to 60 which is a lot less than it is this time, yet the mass is smaller this time so I think that is making me worry more.

I'm keeping my fingers crossed that it turns out to be something more innocent but I'm still preparing myself for the worst just in case.

Hopefully my fears won't be realised but I do have a very bad feeling about all of this 😔

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Dear Newbie,

This does sound very troubling, and it was very wise of you to get yourself tested and looked at right away.

It also sounds like you have a thorough medical team ready to jump. In.

But you do have some serious issues.

With four young children, you are going to need a lot of support.

If you do receive a diagnosis of ovarian cancer and then the treatments of both chemo and an operation, you will need to reach out to family and friends. And you will need to have a serious talk with your husband.

Where are you located in the world?

You are very young for this, but you will need a lot of help.

I think you will be surprised at how much friends and family will want to give you that help.

I live in England and one of my sisters came over to stay for two months, to see me through the beginning of my treatment.

Neighbors made dinners for my husband and daughter.

Your husband may need to take a leave of absence or adgust his work schedule to give you support.

My friends also stepped in and accompany me to Chemo sessions, which can be lengthy, to keep me company.

It is also very helpful to have a close family member or friend, study up and research your case and accompany you to your appointments.

They will remember things you might forget to ask.

I hope that your children will cope and it might be s chance for your eleven year old to step up.

Children can be amazing in these circumstances and there are a lot of little nursing chores they can help with, like bringing you water so you stay hydrated...

And watching Netflix together on your down days.

I am so sorry you have to wait and face the unknown, but hopefully your family, friend and neighbors will pull together to support you.

Hugs,

Laura

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Hi Laura, I am in the North East of England and I have to say I'm quite shocked at how quick they have seen me, it has only been around a month since my first visit to the GP, I think I must be very lucky with my local NHS trust.

I only have my parents here, my sister lives 2 hours away and works full time, she would be desperate to help but I know it would be hard for her to help practically, my parents would rally around but I do worry about putting pressure on them. I do have a lovely group of friends and they all live nearby, I'm sure they would all be happy to help with the children, school runs etc.

My other half would struggle to get much time off and we have just bought a house together so I know he can't afford to take weeks on end off. It will be very difficult if we are put in that situation, I'm just hoping his employer will be understanding.

Thank you so much for your reply, it really is nice to be able to talk to people who have experience and know what they are talking about xx

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The waiting for results is really awful. Ovarian cancer is rare, cysts are common and there are many reasons for raised CA 125. However it is good you are being checked out and, should it be bad news, a plan of action will take away some of the stress. If it did turn out to be cancerous you will have a clinical nurse specialist who you can ask for advice and should also be able to speak to someone from Macmillan to see what help you can get with the children. There is also the Ovacome advice line. Fingers crossed for you- please let us know how you get on.

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Hi neona, I'm definitely grateful that they are taking my symptoms seriously, I think it may have something to do with the fact the last cyst I had got to a huge size before they scanned me and had totally cut off the blood supply to the ovary.

I think I'm much more worried this time because the tumour is smaller yet my ca125 is significantly higher, in my mind if it was the same as the previous cyst the ca125 would surely be lower? I know it's not an exact science but it seems a bit strange that it would be so much higher for a smaller tumour. My mind likes to run away with itself a lot!

Thank you for replying to me, I will definitely be back on to let you know how I get on. :) Xx

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Hi

Welcome to the party 🎈 🎈🎈

I think it’s very good they are investigating so many get fobbed off. Did they say how long until you get the results? Which hospital are you under?

LA

Xx

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Hi lily-anne, I think I've been very lucky this time that I've been seen so quick, I should hopefully hear about the results within the next week or so once they have the MRI back.

I was seen at Bishop Auckland hospital for the colposcopy and blood tests, it's a very small local hospital and I know I'll have to go to a different hopsital for surgery, I'm not sure where I'll be sent if it does turn out to be cancer.

Thank you for your reply :)

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Hello,

Get yourself referred to the Queen Elizabeth in Gateshead, they are a specialist centre for Gynea Oncology. I think you will end up there anyway because of your location.

Waiting is awful but it does sound like your team have things in hand.

Take things one day at a time and try to plan according to the new pieces of information you have.

My son was 10 when I was diagnosed, he was amazing, much easier with one I know. My husband works 4 x 4 rota, he took one trip off which meant he was home for three months which was a huge help.

Wishing you all the very best,

Lisa xoxo

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You are so welcome here - despite not knowing the results we are here just to give some support where possible. Hoping you will get a good result and need not be here again but should you need any advice or an “ outlet” the women here are amazing. There are incredible people out there in your community. I would never have been one to ask anyone for help - a cancer support group I would have run from! But here I am and found amazing Macmillan nurses and general volunteers who are SO helpful. Take a step at a time and try not to visualize “ what if’s...” at the moment ( easier said than done I know!) and we all wish you strength and courage in the next few days x ❤️

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Thank you so much for your lovely message, this seems like such a supportive, lovely group of people and it's really reassuring to know I can come here for advice and support 🙂

I'm trying to keep myself distracted and I seem to constantly flit between thinking I'm worrying over nothing to then getting pains and my mind instantly tells me something is really wrong.

We will see anyway!

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Hi there. The ladies said it all. I just wanted to let you know that I'm wishing you luck for the results. Hopefully it's benign but in any case we're here. All the best. Maus

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Yes we are a very caring group and give each other tremendous support in times of need or indeed times of celebration. We're behind every newcomer but let's hope you won't have to stay long, eh? I hope all the messages are a distraction from that terrible waiting game. Gina

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You have all been so lovely, it has definitely helped to talk about it and to have so many replies from you all. Thank you for all the good luck messages, I will be sure to be back on when I finally get the results.

Emma xx

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Emma

This group is wonderful, you can ask anything, say how you’re feeling. Will be 🙏🏻 sending hugs Hope the waiting ends soon !! Keep updates X. Sue

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Emma, I think everyone has covered all our collective support ideas - here, Macmillan and Anna, the Support Manager at Ovacome on their helpline. Everyne will be beaming out positive vibes for this horrid 'waiting game'. Warmest wishes, L x

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Emma, you could not have come to a better group to share your fears with. We have all been there. You are going to be very surprised at the lengths family members and friends will help you out if needed. I know I was. I was never turned down when I asked for help. My grandsons even came to clean my house a few times. Don't be afraid to ask. I wish you well with your results and PLEASE keep us updated. These wonderful ladies helped me thru every stage. They will do the same for you! BIG hugs! Jill

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Thank you Jill and Lesley I'm so glad I came across this place, although it's awful that any of us need to be here it's good to not feel alone through these scary experiences.

Still haven't heard anything from the hospital, I'll wait til Monday and then I'm going to give them a ring to see what's going on xx

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Maybe to occupy your mind while waiting for results you could design some meals for your young family and freeze them. If you do need treatment, the meals will come in handy for your parents or friends that help out, and if your fears are not realised you can still eat them anyway and enjoy a bit of extra spare time. Just a thought as I know Ican occupy my mind in meal planning, not that I’m very good at it though.

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Ah that is a great idea, I am terrible at meal planning so it would definitely take me some time 😂 x

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Hello,

I am also waiting on results. I have a large pelvic mass and although my ca125 is low I am am waiting on other blood tests and cancer marker results.

My MRI is on Tuesday and I am dreading it.

I am 38 so a bit older than you and just one child but I’m a single mum and very much his only carer. I can barely look at him at the moment - I’m just so scared of not being there for him.

My specialist has told me that statistically it is very unlikely to be cancer but at the moment that doesn’t help and I just can’t believe I have such a large mass in my pelvis - I want it gone!!

Good luck for your test results - sometimes I feel like I’m just not strong enough to go through this and just can’t cope! It is an absolutely terrifying experience.

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It really is, and I am sorry you are having to go through it too 😔 I was a single mum up until last year, it's tough at the best of times so I'm keeping my fingers crossed for you that all of this won't affect you too much. How old is your son?

The MRI is not too bad, I've had a couple and it's just a case of closing your eyes and waiting for it to be done. I've had the other blood tests too and they are testing for germ cell cancer which is extremely rare but more common in younger women. Hopefully it will turn out to be benign for both of us 🙂

Lots of love, Emma xx

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Thanks Emma,

100% have my fingers crossed for you too.

My son is 9 and my absolute world - I feel so guilty that I can’t be myself with him at the moment.

I can’t believe how much my life has changed over the last few weeks.

Anna xxx

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Also thanks for the info on the blood tests - my consultant didn’t tell me that! 🙄

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Any news Emma?

I had my MRI on Tuesday afternoon and today missed a call from ‘a no caller ID’. Have convinced myself it’s the hospital and that it can only be bad news so soon after my MRI!

I tried my consultant’s secretary but she doesn’t work on a Friday! Had started to feel a little more positive until today 😢

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Hi Frenchy, after ringing the hospital on Wednesday (2 weeks after the MRI) it became apparent that they didn't seem to have my results. The secretary tracked them down yesterday (for some reason they weren't on the system) and the consultant looked over them and wants to see me on Tuesday. So I'm a bit peeved that no one would have contacted me had I not rang up but also worrying that they want to see me so quickly. I will be back on Tuesday to let you all know how it goes.

I do hope you manage to get in touch with someone on Monday or maybe even tomorrow, all weekend is a long time to be worrying and stewing about it all. Lots of love

Emma xxxx

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