My Ovacome
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Ned

Hi I rang for my scan results yesterday and the nurse read them out, she said that the scan did not show any tumers up so I said does that mean it's gone and she said it means they are less than 1 cm and that's very good news, so I said so I still have cancer, and she said the scan isn't showing any up, very confused am I Ned or not, I'm stage 4 ppc.

I feel so down, today my friend daughter aged 23 died yesterday of cancer, and I feel so sad for her I've known her since she was 5 years old,

I don't know what to feel today, I just feel so mixed up. Sorry to put this on you all, just need to feel better xx

Trish

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Hi Trish, Sounds like good news to me your scans seem to show that my be the cancer can be called stable, if there is still signs of the tumors on your scan then I don't think you would be told no more cancer but stable is good,

Chin up my love this cancer is so unpredictable and as you know we are all so different in our responds to treatments.

Do you have appointment with your oncologist to read and explain the scans with you this would be a good idea.

Let us know how you go take care Lorraine xx🎉🎉

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Thanks for replying yes I have an appointment on the 30 oct will let you know x

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Sorry you are so down Trish although it is understandable given what you've been through recently. I would ring the hospital again and tell them you feel confused and can they explain more about your results please? Medical staff should know that patients don't always take in all the information they are given and so they should be willing to go over it with you. If you have a CNS or Macmillan person at the hospital maybe ask them to be your intermediary so that you don't have the stress of asking again. Sending hugs Lyndall x

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Yes it was a Macmillan nurse who spoke to me, but not mine, she just wouldn't say either way x

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Trish, I'm so sorry for the loss of your friend's daughter. Must be so tough, & incredibly upsetting. No wonder you feel down today, I'd be surprised if you weren't to be fair! Take time to grieve her, you'll probably find your emotions are all over the place & mixed in with feelings of grief for yourself too. That is pretty normal & you might feel better for getting them out...

NED means 'no evidence of disease' so she is right as if there is anything there it's too small to pick up from the scan. Unfortunately I'm also Stage 4 PPC so I know where you're coming from. The trick now, is to stay as well as you can. Nurture yourself, and listen to whatever emotions come up.

Sarah xx

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Thanks I will,good advice. Will let you know x

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Hi Trish, I never understand results over the phone. Could you make an appointment to go & see some one face to face. It's very hard over the phone if they can't offer you a meeting then ask to speak to someone that knows your case. I hope you can have this sorted quickly so you can get in a better place.

I am so sorry to hear about your friends daughter that is a very sad time for you both. Take care Cindyxx

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Yes I have an appointment with oncologist on the 30 oct will ask her about it just seems so unclear if I'm Ned or not x

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Hi Trrish, good luck let's hope your onc will be able to explain your results in a manner that you can understand. I take my daughter in law because a lot of it goes over my head not because I am stupid it's just so much information in a short period of time. They have to see other patients so time is always tight. Keep us up dated take care Cindyxx

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Hi Trish

Can understand how you are feeling with everything we go through we just long to hear that the cancer is gone . Your emotions must be all over the place especially with the sad news of your friends daughter . Give yourself time to grieve her but also be kind to yourself and allow yourself to acknowledge your scan results sound positive .

Good advice to ring your CNS or discuss again with your oncologist . I remember having to quiz mine about my scan after surgery and chemo , am stage 4 serous high grade . They all use different terminology but as far as I am aware if they can't see anything on the scan that's the same as no evidence of disease . What is your CA125 ? Mine is a good indicator as 3880 when diagnosed and now 9 . So they normally look at both together .

I had some counselling when I finished my chemo ( still on Avastin ) felt very down despite my surgery and chemo working well . I also had the sudden death of my neighbour to deal with and it really helped to talk it all through . Was told to acknowledge my grief but also be kind to myself as emotionally vulnerable whilst supporting my neighbour . May be worth considering some counselling , can normally be arranged through CNS or GP.

Take care of yourself and try and do something you enjoy today . Just off to take the dog for a walk . Love and best wishes Kim x 💜

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Hi my ca125 was 2040 at start now 21 so that's good, may ring my Macmillan nurse to see what she says thanks will let you know x

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That's great news . Am sure your nurse will reassure you. Kim x

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Hi Trish, I’m so sorry for your sad loss, it’s like losing a family member when you’ve been close to somebody for so many years and your grief and confusion is so understandable especially on top of the fact that you’ve been along the surgery and chemo route yourself.

I was stage 1C3 clear cell, I was NED before starting chemo I had it to be sure the little barstewards were totally seen off and now 3 years post chemo I still am NED. I might be wrong but I don’t think they ever tell us that we’re cured because of the very nature of the bloody disease and it’s propensity to pop back up.

If I was you I’d speak with my CNS or Macmillan nurse and ask them to go through your results with you so that you know in your own mind just where you are. I do think that some of the medical profession forget we need words we understand rather than medical terminology and this is exacerbated by telephone consults. You need clarification for your own peace of mind so ask as many questions you feel you need to to get the answers. I would suggest though that your NED status is really good for you. Big hugs of commiseration and lots of love ❤️Xx Jane

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Thanks I will ring my Macmillan nurse again and ask her, think I just need to hear the word Ned , because she didn't say it feel a bit deflated x

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Well your results sound good but maybe you feel down because of that young lady who died. I think this happens us all, my onc told me I had survivors guilt because some of the ladies I had chemo with have passed yet, I am stable and doing okay. Maybe light a candle for that girl and pray she is at peace because most certainly she has to be, Life isnt fair and can be rough at times.

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I’m so sorry to hear about your friends daughter. How very sad.

Understandable you are feeling low.

Everyone here was so supportive when I was going through a tough time after my dad died recently.

You can always ring your cancer nurse.

I always call mine if I’ve come away with more questions.

Like others have said its such a unpredictable disease. But I think the news you’ve had is very good.

Big hug. X

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Sorry you don't know for sure what your scan showed, Trish. It's a nail biting time until we see our Oncos, isn't it? How sad that your friend has lost her Daughter. Utterly heartbreaking, made worse as you've known her so long. Hope things look better for you soon.

Love, Solange 😊💐

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Hi Trish

So sorry that you have this sad news about your friends daughter which makes us think about our own situation especially when stage 4. Perhaps you might like to try writing down your questions just as a reminder when you go to see your onc as it is easy to get sidelined when having a consultation but it does sound as if you may be Ned. ( something I have never been unfortunately even with a low ca125) so wishing you a good and positive result when you get a full explanation! X

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