NED?

[Irisisme]

Hello to all my Teal sisters,

This may sound like a silly question, and I have looked it up but I'm still confused, what do you understand NED means?

My last 2 scans showed no lesions and my CA125 has remained low, so isn't that No Evidence of Disease? And yet I may soon be going back onto chemo!

My Onc is going by my symptoms of bad to severe abdominal pain, faecal loading, pseudo-obstruction requiring emergency treatment etc. He says that we know there is seeding through peritoneum, along colon, on liver capsule, spleen, diaphragm - basically over everything that wasn't taken out during surgery and although a scan doesn't show it, it won't have gone away. He also said that chemo won't cure it.

Chemo and surgery worked well for me but I'm still in pain, and my digestion is PANTS, and yet I have a clear scan and low CA125 - which I am delighted about - but I am really confused.

I'm looking for some pertinent questions to put to the oncologist next week, any suggestions?

Many Thanks for reading this,

Iris XX

[TinaB1]

Hi Iris...

NED means that the disease isn’t being picked up on the CT. That doesn’t mean the seeding isn’t there. Your surgeons will have had a closer look during surgery. I think a growth has to be a certain size for CT which is 2cm I think. No doubt someone will correct this if I’m wrong.

The symptoms you describe are symptoms and signs of a recurrence.

The chemo won’t cure it probably as your surgeon has said but that doesn’t mean it can’t be controlled. Did your scan after chemo show you were clear?

I wonder if you’ve been to pain and bowel management? A lot of women with Ovarian have pain controlled although it’s there underneath and they also use bowel drugs to stop a build up.

I’m sure you have every faith in your doctor, I also wonder what your CA125 was at diagnosis?

Xxx

[Irisisme in reply to TinaB1]

Hi Tina,

Thank you.

I've had a visit from the Palliative Care Team and I'm registered with my Lucan Hospice (who are fabulous), but haven't been referred to any 'bowel team' or anything like that.

My CA125 was 866 on diagnosis but last test about a month ago was really low, something like 12!

So I would be considered NED, hmm interesting.

thanks again,

Iris xx

[TinaB1 in reply to Irisisme]

Hi Iris.. It does seem strange. I think in your position, I'd call the Ovacome helpline. They have a wealth of experience. Xxx

[Irisisme in reply to TinaB1]

Yes, maybe I will. Thanks xx

[AndreeP in reply to TinaB1]

Hi, just a little clarification, my CT scans pick up lesions at 2mm and they are monitored for growth at each scan.

[Kryssy]

Hi Iris,

I'm relatively new to o.c. and I know there are girls here who have been living with it for years who can give you more informative answers but this is just my experience. My last scan showed that many of the smaller tumours had disappeared and the larger tumours had reduced greatly in size and no new sites. My chemo has stopped for now and I'm on avastin only and considered to be stable. However, I was told right from the start that I will never be cancer free as it's impossible to see every single cell lurking in the body. The scans are great but there's only so much that shows up. My oncologist told me that he will say NED only when there is no evidence of cancerous tumour on the scan which he can see with his own eyes and that's not to say that I still won't have cancer. I'm not a candidate for surgery as that will make matters worse and even if I had surgery it's impossible to get everything. They can only take what they can see and then hopefully the chemo afterwards mops up anything else left behind.

To be honest with you Iris, I don't think you should be asking your oncologist about NED as it's a very difficult question to answer and if you are not prepared to hear the answer then it may be better just staying positive and keep well and happy. Living with cancer, as I do, is not so bad so long as you keep it where it should be - behind you and not out in front dictating your every thought and emotion. I've done all the bad thoughts last year which nearly finished me off completely so now I just live my life, have a good laugh, get up to mischief and tell those that I love that I do, constantly, and don't take anything for granted.

Good luck sweetie. xxxxx

[Irisisme in reply to Kryssy]

Thanks Kryssy,

It will just feel so weird if I'm NED and back on chemo!🤔

Iris xx

[AndreeP in reply to Kryssy]

Hi Krystal, I’ve had a similar diagnosis in January 2017. I’ve been on AVastin maintenance since August 2017. Could I ask when you were diagnosed? I’m struggling with ideas of how long one can be without progression (note I say progression because the disease will not go into remission) and the start of a new treatment plan. I love the idea that some of the ladies here refer to OC as a chronic disease with flare ups, makes it a little less terrifying.

[Kryssy in reply to AndreeP]

July 2017. Not that long ago really. xx

[Hidden]

I am confused by it also, Then sometimes 125 doesn't rise for some reason, Some oncologists go on Clinical Assessment. If you are having a lot of constipation and build up then he is focusing on that. Try prunes about five a day and that will help the tummy/ I cant help about the seedlings and I think yes ring the Ovacome helpline

[Irisisme in reply to Hidden]

Yes, Clinical Assessment then. As for prunes, any fibre seems to make things worse, unfortunately.

[Lily-Anne]

I have learned so much about NED. It means different things. No disease detected as in all clear, however that only covers visible to the eye disease. NED also means no progressive or additional disease to what they know is there. NED also means that there is some blood evidence or shadow on scan but it's unconfirmed to the origin.

Nothing is straight forward, I think they need a real dictionary where it means what it says lol

LA xx

[Irisisme in reply to Lily-Anne]

Yes, I'm just gonna ignore it all. As long as I get decent pain management I can get on with life xx

[tara108]

My understanding is that Catscans show anything 1cm or more but not under 1cm. So there may still be disease which then would show on a Pet/Catscan. Currently I have a 4mm spot that wouldn't show on a Catscan. I always have Pet/catscans now.

Also the CA125 number isn't always reliable. Some women have a 4 and recur on 7!! Some go up to 2 or 300 and nothing showing on scans. Usually if your CA125 doubles etc or goes up 3 times in a row, they take a look when you reach over 35.

My gyn/oncologist surgeon says, "I don't treat a number, I treat the patient which includes being symptomatic and what shows on a scan." It is true that microscopic cancer can be there but until we are symptomatic or it shows on scan they usually 'wait and watch' as it doesn't change overall survival rate if we have treatment early or wait. But that is also changing a bit with new drugs coming in on clinical trials. Anyway, hope this isn't too much information. If it were me, I would definitely be asking for a 2nd opinion.

[Irisisme in reply to tara108]

Not too much info, it's very useful, thanks. Where are you to be getting a PET - only pets I've ever had are called Alfie and Buster! 😁

[tara108 in reply to Irisisme]

Wow. An amazing coincidence with a dog called Buster. I am originally English and lived in London for 29 years and when I was a child we had a dog called Buster. Then travelled and ended up returning to Australia to live. I came to London every year when I could to see my Mum. Anyhow, I originally had an aweful oncologist for 9 months and had 3 Catscans in the 1st year which is a huge amount of radiation but then realised that was probably the least of my worries! But then found a really good Onc. who is very happy for me to have Pet/Catscans instead, as very little radiation and shows more. I also had one MRI. The reason I don't trust Catscans is I was told for my 1st operation that it would be 3 hrs, no ICU after, just recovery room and 4 days in hospital. However my surgeon found cancer on my diaphram which they didn't know about and it turned into a 7 hour operation and 10 days in hospital. Hadn't shown up on Catscan. So now I want to know exactly what is going on inside my body.

I am in Sydney, Australia so maybe my location doesn't help you but they would have Pet/Catscans in UK. Sending hugs from the other side of the world. Do let us know how you get on if that feels right for you.

[Irisisme in reply to tara108]

Yeah, they would, but would NHS pay for them? I've wondered whether an MRI would show what's up with my bowels but Onc just says he knows- it's cancer!!!! Well, it's the metastasis so I suppose we do know really, I'd just like to SEE it.

Oh, got to say, yesterday was virtually pain-free!!!! BLISS! Don't know why; getting some pain today but not too bad. If I could only work out why yesterday was so good - not down to passing a motion or what I ate. Got lots done yesterday.

Thanks for the hugs, they always help 🙂👍❤️️

[AndreeP in reply to tara108]

Hi, just a little info, my CT scans show lesions at 2mm, but I’m told they don’t worry about anything less than 1cm.

[Howick01]

Better to go by signs and symptoms than numbers.

I think with OC we always have to live on the edge.

Hope all goes well for you xxx

[Irisisme in reply to Howick01]

yes, you are so right! Thank you xx

[OC1985]

Hi Iris, I'm not sure how others responded, but I first had Ovarian Cancer in 1985. My CA125 have always been wrong. In my case every time it came back without Cancer, I had Cancer. My second occurrence was 2011, so I was very fortunate to have had all those years without Cancer especially since I was given the 5 year diagnosis. In 2011 I underwent Cervical cancer and then the Doctor was very smug and ignored my pain for 4 year's telling me I was fine. I had my family Doctor of over 25 years complete tests and I was correct, the cancer was back. I am as of 2015 terminal, did 8 months of Chemo and had some reduction in my lungs where the Cancer has taken over. Had a Thoracic Lung operation to remove a cancerous growth in September of 2017 and in December had to have Spinal surgery because of the osteoporosis and Chemo damage. The best tests are MRI and CT scans. It is sad that there aren't any real studies and I was fortunate to have found 1 Doctor out of 4 that suggested an Ultrasound. I believe they should allow an ultrasound anytime a female complains about severe pain and swelling. I was told 3 times prior that it was a virus. g

[Irisisme in reply to OC1985]

Wow! You've had one Hell of a tough time, G. 4 years of pain being ignored? Plus all of the other horrendous things happening to you - I will get a 2nd opinion if I'm fobbed off but I realise now that I haven't got anything to complain about compared to you. Thank you for replying, I hope you have good 'home support'.

Lots of hugs,

Iris xx