Are you ever told you are NED or in remission with OC?

[Pendle99]

This may seem a silly question but are you ever told you are NED or in remission with OC? I saw my consultant last week after 6 chemo plus surgery. My latest CA125 was 13, I feel great, ascites gone, CT scan post surgery was 'great' but I still haven't been told directly that it has gone. Do I need to directly ask?

[Lyndy]

Yes.. I was told that the cancer was all gone. They may not use those exact words but ‘clear scan’ ca125 within normal range etc.

Most Onc’s are cautious about saying more because recurrence rates are high and they can only begin to think you might be over it after 5 years.

Mine did say ‘maybe we’ve cured you ‘ but I think he might have been joking....they also have a weird sense of humour!

I would take what you have and celebrate. There’s no guarantee it will stay away but there’s also no guarantee it will come back either!

Enjoy! X

[Pendle99 in reply to Lyndy]

Thank you x

[January-2016-UK]

I was told I had no visible disease after my operation and following two further chemos that the CT-scan was clear that it was good news and I'd had "a complete response." The words remission or NED were not used.

[Pendle99]

Thank you xx

[ShropshireJo]

Hi. If it’s any help, I was clear for eight years after surgery and chemo. Diagnosed 2c in 2008. First recurrence 2016. All you can do ask the question but I guess they don’t know the answer cos we all seem to be different. I know of a woman who is at least 30 years since first diagnosis and treatment and is fine. All the best Jo 🌹🌼🌺🌻🌸

[Pendle99]

Thank you. 30 years! Wow! That is something to aim for xxx

[Nancy222]

I've been told the scans are good and there's no evidence of disease at this time. The key being at this time I guess

[Caroles1]

My onc told me I am cured, but still go for 3 monthly checks.

I am aware it could come back, but am thankful for each day.

Live life to the full, that’s me,

Carolexxx

[Hidden]

Hi, I was told after debunking and chemo that the results were optimal, bloods normal and scan clear. Remission was not used, NED was.

Best, Lisa

[ecappiello]

Yes, it happens! I would ask. My gyn/enc surprisingly used the term "cancer free" when I completed chemo and came in for my final follow up 4 weeks later. I am cautiously optimistic but it was wonderful to hear. I had a 20 lb. tumor removed along with complete hysterectomy, etc. and was classified as 3C. Then went thru my 6 sessions of chemo with Gemzar and carboplatin (had allergic reaction to Taxol) . Will be going to the standard checkups every 3 months for 2 years, 6 months for an additional 2 years, and annually after that. If I hit the 5 year mark without a recurrence, she told me then I am considered "cured". But for now I happily cling to those words.... Cancer free!

[Pendle99 in reply to ecappiello]

They sound like heavenly words to me xxx

[Hopefulgal1]

Never quite got to that magic “No Evidence Of Disease” status myself. I had great response to Taxol but there was still a tiny pea that lit up with a pet scan. Then it slowly grew back. “Recurrence” for me seems an odd word in some circumstances as it just grows back as not got rid of completely.

I read many stories of women making it without recurrences for many years so I truly wish you a happy disease free life from here!

X

[KBM22]

Ah thank you so much for asking this as it is exactly the main thought occupying my brain right now!

I’m 4 weeks post surgery after 3 cycles of chemo and about to start next set of chemo.

Surgery removed everything and most was dead from chemo already

Saw consultant on Thursday and all was very positive, response to chemo was fantastic, but I don’t think I asked all the questions I meant to and left feeling really meh even though everything has gone well so far. And perhaps subconsciously because of surgery outcome I was waiting for a more definite statement that wasn’t possible?!

Really useful to see everyone’s responses here and I’ll get my questions written down for next clinic appt.

And whatever words are used Definitely sounds like you’re in a great place! X

[grammeejill]

Even after almost 3 years after 3b diagnosis, all my oncologist will do is comment on the length of remission so far and a warning that my Fallopian tube cancer was nasty and could recur. He is very closed mouthed about it all. 😂

[Pendle99 in reply to grammeejill]

I get the feeling they are all closed mouthed!

[Perthgirl in reply to grammeejill]

Please could I ask you what type of Fallopian tube cancer did you have? I was also 3b and am happy to have reached 1 year after end of chemo with "excellent response achieved" The onc is also hesitant to say NED but he did say to my husband that he was extremely optimistic . Hoping and praying his feelings are on the button!!!

[annieH1]

Hi Pen,I was told Christmas time last year that I was in remission. that was after having 3 contrast scans with no evidence of disease.I am still classed as advanced stage four in remission but I'm taking that and trying to enjoy life as best I can.I am still on Parp inhibitors which I feel is responsible for my remission and I M on them over 2 years now.I know my disease will come back and become active again but I'll jump that hurdle when it arises. Xx

[Pendle99 in reply to annieH1]

Thank you for your reply. You know when you just want to find out if what can be seen by a CT scan has all gone. Rather than just the 'bloods look good' etc etc. I know there is a high chance it will come back but I just want to find out if I can put this awful period behind me.

[Numi]

I was diagnosed in January 2016 and after surgery which showed it was 3c, and 6 cycles of chemo my first 3 month scan came back clear, and I asked my oncologist whether I was in remission and she said yes. That was September 2016. I had another scan in February 2017 and it showed that the cancer was back with a measurable tumour and ca125 of 200. I had 6 further cycles of chemo, then went on Naraparib (PARP-inhibitor) in October. My latest scan showed the tumour is barely visible and my CA125 was 23 a couple of weeks ago - the lowest it's ever been. I don't think my oncologist will use the R word again, so I'm not asking - just happy to be where I am at the moment. My surgeon said early on that my OC wasn't curable, but treatable and to think of it as a chronic medical condition, and that's what I try to do now, as the shock of finding out my 'remission' had been so short-lived was immense. Hope all goes well for you.x

[Lizchips]

I've been told I have no sign of active cancer, my Dr has told me I'm doing really good. If my cancer returns which is likely we will jump on it with both barrels❤❤❤Liz

[Lizchips]

Oh been ok since diagnosed in 2014

[Lily-Anne]

I was NED for 3 years before I recurred. No tumour or scar evidence and a CA level of 7. However I have learned over the years that the term ‘no evidence of disease ‘ is broad. It means from no measurable or visible disease on the scan/ to naked eye. To no new or progressive disease. To no notable activity (sleeping/dormant)

It wasn’t until I recurred that this was explained to me. This was despite being told my treatment was curative

So I would say terminology isn’t necessarily important. How you feel and how your disease is behaving is. Slow growing, sleeping, inactive would please me

LA xx

[Pendle99 in reply to Lily-Anne]

Thank you L.A.. How are you doing as you have been quiet recently. Miss your humour xxx

[Lily-Anne in reply to Pendle99]

Aww thank you. Have been browsing but trying to get my book finished. Trouble is my puffy arms only want to type for a little while and then they ache. I was hoping the skinny fairy would visit in the night but currently she is absent without leave

Much love

Xx

[mrstadpole]

Hi Pendle

Your post about your experience with OC is so much like mine! I am feeling really good at the moment but I have been told that I require 18 treatments of Avastin (I have had 3 so far) as I am on a trial.

When I asked my consultant about a post op scan he said everything has been removed and if you experience more ascites or bloating in the future then we will scan you. Initially the most painful part for me was the build up of fluid. Six and a half litres were removed the first time round .

When I go for my 15 mins Avastin treatment in 2 weeks I am going to say that I really want to have a post op scan as I think this is essential.

How many Avastin treatments have you had to date?

Thanks

mrstadpole

[Pendle99]

Hi Mrstadpole, we sound v similar indeed. I am also in a trial and guess it is the same one as I am now just having Avastin. I had my first lot of Avastin on it's own last week (and it was number 3 of Avastin to date). I only had symptoms for about 2 months before diagnosis. One GP decided my swollen belly was trapped wind despite there being an ultrasound report in my notes referring to a small volume of ascitic fluid! 4 days after seeing that GP the hospital drained off 4 litres of fluid! I have had a post op scan and last week had an end of treatment scan.

It would be nice to keep in touch and share notes as we swem to be at similar stages in treatment and I haven't meant anyone else in person with OC.

Pen xxx

[mrstadpole in reply to Pendle99]

Hi Pendle

I am still finding my way around this site. Yes I am due to have my 4th Avastin treatment in two weeks time but at the moment I am feeling really well .I am hoping that my oncologist has a arranged a post op scan when I go back for my treatment.

I live in the SW of UK so I guess you do as well. I typed in people in your area and came across your name .My OC came out of the blue no symptoms until large swelling in abdomen and then I went to A&E as the pain was just dreadful.I am really glad I did as at least they sorted out the scan straightaway.

Hope to keep in touch.

mrstadpole

[Welshandproud]

My oncology department refer to my "stable disease" which I've decided is nosebag itis. Apparently it is no different from being told I am "in remission" but sounds so much worse in my opinion. Hence I've given it this silly term and am pleased to be doing well with my nosebagitis!!

[Pendle99 in reply to Welshandproud]

These oncologists do have a way with phrases and terminology! I was told the results of one CT scan were 'as expected.' Not sure if their expectations are the same as mine!!!😉

[CallmeMum]

Hi lovely

Different oncologists have a difference in opinion as to remission/NED some will tell you after your debulking surgery you’re NED some will wait until your CA125 is very low and tell you your NED and some wait until after scans to say your in remission others will wait until you’ve been NED for a while and say I think we can say you’re in remission it really depends on your oncologist and if they feel you can take the information. My special person’s oncologist knows to tell us everything she’s even at the point of playing guess the CA125 and we know it’s just a bit of fun but her friends oncologist won’t tell her anything and I think they assess your mental health on the whole situation to see what you can cope with xxx

[Pendle99 in reply to CallmeMum]

Thank you. I just want it in black and white!😊

[Sunfleury-UK]

I was told I have NED after my surgery. I then had chemo as a 'belt and braces' described approach and have being continued to be described as NED by my consultant since. I had surgery in October 2012. I'm content with my understanding of what 'NED' means. I've never pushed for any further description. I found asking the question 'would you be surprised given what you know if.... ' quite a useful way for both me and the consultant to have a constructive conversation.

NB I read somewhere someone else using this and could see how it might be useful, so make no claim of it!

Sx