Just had the nurse on from Christie’s with the results of my end of treatment scan . CA 125 down to 15 . Which I thought was still a bit high , considering some ladies get into single figures. No evidence of disease at the moment. Booked in for an appointment in three months, but to go back if I get any symptoms. Like what ? Don’t feel elated like I thought I would. She didn’t say I was in remission, or anything. Don’t know how I feel. You ladies have got me through all this , and I thank you for that so much .
Sheila xxx
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Manchesterlady
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Hi Sheila. I think sometimes people expect to be singing, dancing, break out the champagne but it's isn't like that and that is probably due to what you have been through and the constant fear which let's face it is always at the back of our minds. What I will say though is that your result is good, I've always just been told NED but taken that for what it is and tried to move on - not throwing a party but thinking well I made it through that and I am gonna try not to dwell on what might be ahead but take a day at a time and deal with whatever if I need to - who knows I may not need to and rather than spending time worrying I grab the here and now. You need to give the news a time to sink in but at the same time enjoy it. Look forward to Christmas and other treats, you deserve it xx Kathy xx.
Hi Sheila first of all..well done! It is a bit strange to come to the end of treatment...I certainly remember feeling less than ecstatic and a bit lost. You may find the feeling shifts around a bit too as you come to terms with your recent experience.
Give yourself some processing time and throw in a few treats is my advice xx
Hi Sheila well done on the news it’s really a very low figure so you have done brilliantly! I know it can sometimes feel a bit flat after treatment ends, I’m four months on and awaiting my first follow up and wondering what is causing my current backache....it’s hard but the worry is always lingering there, the key is to somehow not to let it rule your thoughts and still try to stay positive.
You’ve done great so plan some nice treats and enjoy the festive season, you deserve it!
Hi Sheila. Some very sensible advice from the others. I remember well how I felt after surgery and chemo. It was quite flat. Yes, I was relieved to have got through it all but I think I’d expended so much emotional energy just surviving the shock of diagnosis and treatment that I didn’t quite know how to continue my ‘ordinary’ life. Your results are fantastic so just start to let it all sink in and gradually pick up the pieces of your life. Be kind to yourself, plan some special treats and go with the flow if you feel sad and emotional from time to time. The constant worry starts to disappear and the joy of being alive starts to kick in. Sending you lots of love and gentle hugs and enormous congratulations for your results. Jo 🌺🌼🌸🌻🌹
PS. I had eight fantastic years before it recurred so live life to the full xxx
I think sometimes it takes a while for the news to filter through, I think its great you have no evidence of disease and your 125 is also good, they take the two together to give you the results. So live life to the full and be happy
When I was declared NED and with a "normal" CA-125 of 35, I remember posting the good news and a lady called Sandy who now lives in Canada replied to me saying she'd been cancer free for 17 years from a Stage IV diagnosis. She wrote, "So, enjoy your fantastic news. Believe with all your heart that it wont come back and do everything in your power to prevent it from returning (diet, juicing, exercise - whatever it takes - do the research, do whatever seems right for you Enjoy this rapturous moment in time because every moment and every day it a gift we'll never take for granted again."
I know it's not easy to put all this behind you but you are now treatment free so do take joy in every little thing.
All the best!
Helen
Citrine will correct me if I've got this wrong.
But when she was discharged, her consultant said something like " of course it may come back, but you must live your life as if it won't". Such good advice, I think. x
Hi Sheila - that’s great news. It’s probably makes more impression if you hear the news in person from a healthcare professional, rather than over the phone, so it probably does feel like an anticlimax. I was Stage 3 and have been NED for 4 and a half years. My CA125 hovers around 13, which will do for me (it was 3,900 when I was diagnosed!). Embrace your new normal and don’t wait to do stuff - enjoy things when you can.
This is great news, Sheila, considering at the start you were so fearful of even doing the treatment! Don't get too hung up on the CA125. My lowest ever was 20. I chose ultimately not to know it, and felt better not being haunted by numbers! I felt fine even when mine was 3 figures. Embrace life and rediscover the person you were before this thing hit - it is possible, bit by bit. Do lots of lovely things that distract your attention for it and don't read the cancer bad news stuff. Exercise is great (good feature on that yesterday on BBC breakfast) as is having some aims and things to look forward to. All the very best. xx
This is brill news and a CA125 of 15! I am 10 months on post 2nd surgery and remain NED and with a CA125 of 14. Celebrate and do some nice things for yourself. Best wishes. xx
NED is the magic phrase we would all love to hear - they won’t say ‘remission’ as I understand! Well done for getting to that place you have done so well and bravely. And it is now - as many others are saying - time to enjoy life as much as you can and plan a lovely warm Xmas treat or two?! X
I think worry is our middle name after diagnosis but learning to focus on the time you are NED --may it be forever--is where our minds should try to go if we are lucky enough to even hear that. I got a therapist to help me cope with the worry (mostly between test and result since that will go on the rest of my life) and she said I should ask myself how does worry make my day better than not worrying--that I should ask that every time I start (to obsess with worry) and you know what? It helps! I stop the moment I ask myself and if I am lucky, it can last a long while. You done good!!! Everything is where you want it to be and a clear scan is the best. Being happy and relieved are two emotions I have learned to feel and enjoy "in the moment". Happy for you! oxoxox Judy
That’s great news - and lot of great advice - it’s hard but you do have to learn to live in the moment while still planning ahead - none of us have tomorrow guaranteed with or without cancer x
Hi Sheila, Your 125 is a good result, now when you are feeling better go out and celebrate with a nice dinner with your loved ones Take care Lorraine xx🎆🎆🎉🎉
Lots of good advice here. You have managed to get through so much already. I think sometimes the emotional upheavals and anxieties are just as tough as the physical parts. Not sure if there is a support group that you can attend but I have found it incredibly helpful to share with others who are in my situation. I just came home from an ovarian group meeting and I know I would be far worse off without the comfort the women there provide.
Congratulations, Manchesterlady!!!! I know exactly how you feel! After a couple of rounds, we tend to be "cautiously" Optimistic. I was deflated when the word "remission" was never used for me even when my CA125 was 16 and there was nothing on the Catscan. I thought CA125 was high for me, because, I thought single digits was the magic number. But, my nurse and dr told me that CA can be high if there's an infection or inflamation was in the body. I go for my second 3 month on 12/3. They put me on a Parp inhibitor, so, I'm hoping that my CA drops. I'm still a wreck but hard not to be.
I can tell you this, just enjoy your 3 months and I'm sure everything will be good. The ladies here have all given great advice and I, Too, should take it. lol.
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Enjoy this rapturous moment in time because every moment and every day it a gift we'll never take for granted again."
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