Just call me NED

Just a quickie as I'm feeling completely wiped out but my CT scan results showed no evidence of disease (NED), which is good news. I've been told that they might not scan me again until I actually start having symptoms as I've had rather a lot of CT scans over a short period of time. I did suggest maybe an MRI would be better but there is some problem with that as well.

I'm worried about waiting until I have symptoms as I always seem to feel like I'm having symptoms of some sort or other.

Anyway enough of that after the initial elation wore off I started to feel quite sad and weepy again but I'm not really sure why.

29 Replies

  • Congratulations!

    Relief and shock will often do that to you...

    I hope the good news sinks in soon.


  • Great news. understandable response, I think everyone has that at one time or another, just enjoy this time you have now. Ann xx

  • Fantastic news, I would think keeping an eye on the CA125 is more important than waiting for symptoms to arrive, once if at all it creeps up then I,m sure they would arrange a scan. Love Paul x

  • It was Prof Jayson that I saw today and that's what he said. I just find the symptoms so vague that I never have complete confidence in myself

  • Dear Lorraine,

    First of all I hope you can celebrate the NED result. So much better than any other feedback!

    I think you've been on an emotional roller-coaster recently with so many different problems so it's not surprising that the relief of this result makes you feel a bit weepy. I'm also on a 'wait and see' regime with my oncologist but I've never had any symptoms associated with Ovarian Cancer so I don't hold out much hope that I'm going to be able to spot it.

    Just keep as well and fit as you can, keep up your running if possible, eat well and look after your health as much as you can. I hope this leads to a long long time without any more treatments.

    Love Annie xxx

  • Loving the running and agree that is the best course of action

  • Great news scardycat40.

    Annie, I can relate to what u say. Just had last first line chemo and awaiting scan. After that I won't have 125's or scans when I go for checkups as they don't do them automatically anymore at Weston Park. They will rely on me telling them I have symptoms - but I didn't have any in the first place!!

    Already having difficulty sleeping which I think is down to stepping into the 'unknown'!

    Good to 'talk' on here tho!

    Annette xxx

  • Oh how I sympathise with you. I have a lovely GP and I know he'd get a blood test done if I wanted one. Perhaps it's worth asking at your local surgery.

    The argument is apparently that having blood tests done will cause us unnecessary worry. I think they would do well to ask the patient before deciding how we feel.

    I think you must be about 14 months behind me. I had a really good long remission. My cancer centre do blood tests and as mine was rising they did a CT Scan in January. It showed the tumours had reappeared but we're not doing anything about it until I get some symptoms to worry about - so perhaps your cancer centre is quite right in saying blood tests aren't necessary.

    Let's hope you won't even have to think about this for a long long time - well in a perfect world - ever.

    Sleep well tonight. xxxx

    Love Annie

  • Hi Lorraine,

    Very good news love x G x :-)

  • Hi Lorraine!

    Such good news but I can completely identify with the feeling of being shell shocked. It's often too much to take in when we've been steeling ourselves for bad news ( and we always do, don't we?)

    Try to do what Auntie Annie says, look after yourself, spoil your little cat (I bet she's getting quite big now?), think of a treat for yourself and keep on putting one foot in front of the other. I know it's not easy to spot symptoms when we're not sure what we're looking for but we're here to ponder your fears and worries and there's always Ruth at the end of the phone if you have any wobbly moments.

    Try not to let the 'what if' spoil the 'I'm OK' ;-)

    Love n hugs

    Wendy xx

  • Very good news, enjoy! I felt a bit weepy when all the test results were in, it's natural (I think).

  • I am glad I am not the only one I was feeling a bit guilty for not feeling more grateful

  • Glad to hear your good news Lorraine. Hope you will be able to relax a litlle now but I know it is hard sometimes.

    Love & hugs

    Mary xx

  • Excellent news, it is scarey when we are cast adrift after successful treatment, as everyone says, enjoy being off the treadmill and long may it last.

    If you have any symptoms that you are not sure about, dixcuss them with your GP who can refer you to the oncologist or raise them at your 3 month check up.

    I was told that there is no benefit to regular CA125 blood tests being done when in remission as there are several reasons why it may be raised at a specific time.




  • The CA125 can give an indication of something returning some 3 months before a scan can show a recurrence. Although one should not be alarmed when it first rises but if continues then alarm bells should ring. Waiting for symptoms in my opinion is leaving it too late although some oncologists prefer to wait. Love Paul xx

  • Thanks Harley,

    Just got my latest result and it has crept up to 80. I also noted on my CT report that I was Stage IIIC when at diagnosis I was stage IV so I've asked about this just waiting on a response

  • Dear Lorraine

    Well done you!!! I think we all know how you feel. Its the build up to the scan then the reality

    of the results which we carnt change, such a bummer. But it happens everytime. You can have a ca125 done at your Doctors and then he can refer you straight away, it is a little security as you say waiting until you feel anything is wrong I dont like that bit with this disease. Ask then if they will do it. My original GP said if I felt that it gave me peace of mind then it would be OK, It makes you feel like every twitch is OC but we do know our bodies, I like it when they say its constipation that I can deal with!!!

    So pleased with your news hope my scan at Christies 17th comes up as good, otherwise Prof Jayson will have to look in his toolbox.XX

    Love Barbara X

  • Barbara you make yourself sound like an old car. I think the problem is that my CA125 is creeping up but without any obvious explanation as to why. Currently I get stomach cramps, feel nauseous, feel bloated after eating, I get pain along the diaphragm and pain under the ribs and recently been getting breathless after exertion.

  • Yes anew MOT would be great " woman needs new body" without blemishes!!

    Just found out that I have a cancer under my eye, blob growing at a fast rate it is coming out in a week. The Consultant said plenty of skin there, should have asked at the same time for eyebag job to be done!!

    Have a good weekend.

    Love Barbara

    PS Sun has decided to shine carnt ask for more than that.!! X

  • I felt really down just after finishing chemo, my last scan was before session no 5 and still showed disease so I am trying to imagine that the last 2 sessions killed it all off but who knows. I will have to wait for my next scan in 3 months to see how the land lies.

    Enjoy your NED and long may it last.

    Big hugs

    Amanda xxx

  • When I finished chemo I still had some residual disease but since I stopped chemo it seems to have resolved itself although I still have some small calcified retroperitoneal nodes but these are stable

  • Congrats on your scan result. Your CA125 of 80 could be due to whatever is going on in your abdomen (tummy). Your symptoms suggest something is going on, very possibly just temporary, ie very intermittent, obstruction of bowel after eating, possibly due to adhesions post-surgery, which are fairly common. Someone else in Ovacome mentioned adhesions in a blog recently - maybe you could search for it.

    Anyway the good news is that if your tummy symptoms were due to cancer that would have to be big enough to be seen on the scan, in my opinion anyway. (I am retired GP, not oncologist!) So it would appear to me to be due to some other cause in your abdomen, very possibly adhesions. Maybe you could ask your oncologist if that is a possibility. If so, maybe some medication would help, though often I think you just have to live with it.

    It is great you are running. I like running - but not marathons or anything. I think exercise is a great help/boost mentally and physically.

    All best wishes.

    Eileen xx

  • Thanks Eileen,

    Its good to know there may be some logical explanation sometimes I just think I am going mad. I more sort of plod at the moment that actually run but I do enjoy it - it does lift my spirits. I think my marathon days are possibly over but I am doing a 10k in July. My cancer is low grade so not always obvious on a CT scan. My oncologist said if I really felt that I needed something they could always look at hormonal treatments and there is a trial starting later this year. At the moment though I don't feel I need to be taking any cancer medication but its good to know if I do have a reoccurence then there are other options for me.

  • Thank you Lorraine your msg gives me hope

    Much love xxxx

  • There is always hope :-)

  • Hi Lorraine ,

    Catching up as we were a way in Derbyshire last week visting hubby's family ....

    Sooooo delighted to hear your great news and as Joanna righty says it is a scary feeling after your last treatment .There has been many of us on here that has felt the same and its as if we are on our own well thats how I felt last year , but I knew that there was help there if I needed it .

    I love your last post .. that little word 'Hope' gives so much to so many ..........

    To me each day is a new day and I try and get the most of out of it .Hope spring is coming your way as it has here in Norwich xxx

    Love Jan xxxx

  • Thank you for your lovely post

  • Cannot *believe* I missed this one, am so sorry, been MIA for a few days. I am so GLAD for you! I totally get the mixed emotions thing . I think that even assuming the CA 125 thing is just a background noise, which it may well be, those emotions will continue. Very hard to trust one's body to get along properly again now. Bit like an old car which has started to have things go wrong... Every knocking sound and you'll want to rush it into the mechanic again.

    You sound like a proper runner. I envy you, I am totally bricking it at idea of walking 5k in June! On positive side: being fit is a good thing, there is no doubt it helps the body be stronger to resist return - plus: I may be stretching here but it *may* relate to CA125 too - heavy exercise can create inflammation, and if you are training hard... runnersworld.com/masters-tr...

    How is it at work? That cousin has now gone in for an op (hip, not "our trouble", but shes been in lots of pain hence my reluctance) so its a bit awkward asking her still but I haven't forgotten. Do look at the Q's on the personal message tho as they are very pertinent...




  • Thanks Sue but honestly I do not do any high intensity training as I am simply not fit enough. I barely move quicker than walking pace at the moment. I was thinking about going to see my GP as been feeling breathless recently even during day to day activities, my heart rate has been a bit high even at rest and I have a bit of a persistent cough. I must sound so neurotic.

    I didn't understand the last part of your message and wondered if you might have confused me with someone else as I'm not working.

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