Hmmm. Cast adrift.

[Emsymits]

Ok ladies well I've finally had the NED following end of chemo and scan. 🎉

Obviously I'm very happy but am now feeling a bit cast adrift. I'm not due back for six months which surprised me as lots of you ladies have 3 monthly check ups. My cancer nurse assured me it's normal for 6 months but I'm just curious.

Has anyone else been sent off with a 'see you in 6 months for a chat'?! I even had to ask for my CA125 to be checked in 6 months as they don't routinely do it 🙄

I know I can call in the meantime if I notice anything, but as I didn't have symptoms the first time I'm a weeny bit concerned.

Could it be because I was 3A not 3C?

Confused...

Em

X

[Cropcrop]

Congratulations on joining the 6 month club and welcome I'm on 6 monthly visits and have CA125 and routine bloods each time. You do feel a little adrift at first, but it's like anything, you do soon get used to it. There's always some comfort in the knowledge you can make a phone call if there's anything worrying you and we're all here for you too. Keep as well as you can, big congratulatory bugs and love ❤️ Xx Jane

[Sunfleury-UK]

I was 1c & finished chemo (ned) June 2013. had 3 monthly checks for 2 years and then 6monthly. I know that there is currently some trialling of different approaches to follow-ups eg, having a phone 'triage' type call with CNS alternating with outpatient appointment (Christie Mcr)... It may be worth calling your CNS just to clarify if this is standard for your hospital (& has been for some time or a new approach... I found that these types of discrepancies used to niggle away.

Ive shared this article by Dr Peter Harvey (Onc Psycology) fairly often as I think that for many people it really helps to acknowledge those 'adrift' feelings.... I found it invaluable as i started to recover and really helpful. Very best wishes, Sxx

cancercounselling.org.uk/Pe...

[Dyana in reply to Sunfleury-UK]

Helpful article , thanks , Dy

[Lily-Anne]

I was 1C and had 3 monthly checks so am a bit surprised. Do you have contact with your CNS?

LA xx

[Purple-iris]

Pleased to hear you have been given NED after your treatment and scan . I was told it is very common to feel vulnerable after treatment finishes , you have been running on survival mode since diagnosis.

I had some counselling once my chemo finished and really helped to talk to a professional outside the family, and process my diagnosis. She told me we need to allow more time for our minds to heal . 😞

I am still on Avastin so have 6 weekly bloods and scans every 6 months whilst ca125 stable . Once finished on Avastin I will have ca125 every 3 months for first year . Am stage 4 high grade and had no symptoms apart from more frequent urinating . Wouldn't be happy without regular bloods , which I know are not always a good indicator but mine seems to respond was 3880 when diagnosed and now 10 .

Some ladies find the monitoring causes more stress but we are all different and you must fight for whatever you need to give you the peace of mind to get on and enjoy your life . We all have to go through so much physically to get to NED that it is important that we are supported mentally and don't let this horrendous disease mess with our heads 😀

Starting a fear of recurrence course in November to help with strategies. Lots of ladies have also recommended Penny Brohn centre in Bristol .

Love and best wishes, here's to many years of NED 🍾👍Kim x 💜

[SCWI]

Hi Em

Just to say that strangely I was at my lowest ebb on finishing chemo and being NED. I was so used to all the weekly hospital appointments and being in survival mode that I felt the rug had been pulled from under my feet. I remember going into Maggies Centre and having a bit of a meltdown which they seemed entirely used to. I got some good counselling there and did their Stress and Mindfulness courses which helped and met others in the same situation. Congratulations on being NED and please do lots of lovely things and enjoy it. If it were me I would at least wanting to have three monthly blood tests but as others have said, everyone is different. Take care. Sophia xx

[85live4ever]

Hi Em, we are all different & so are our GPS. My onc would of been happy to put me over to every 6 months checks but my daughter in law & I wasn't having it. We both made it clear we wanted to not only be seen every 3 mouths but stay at the cancer clinic rather than over in the other hospital. They did try to persuade me to leave the cancer clinic & be seen in the other hospital. They don't do your ca 125 or any other blood test or anything else in the other hospital.

I am 3c & it keeps coming back & feel happier with 3 month checks ups. If you really don't feel happy with every 6 months ask if it can be changed to every 3 mouths. Good luck keep us up dated take care Cindyxx

[Hectoria]

You can get your GP to check your CA125 for you every few months and then you can keep an eye on things yourself. My GP gives me the test whenever I ask, although tbh, I am now at the stage where I don't want to know the numbers as it is just another thing to worry about. If I could do it all over again, I wouldn't have any checks and I would just go and have a ball and forget all about it if possible. Easier said than done I know, but the worst thing is to keep stressing about it coming back, especially as you are NED now. Carpe Diem Em.. Xx

[Boot1947]

I was 3a and have been NED since August 2014, but I still have 3-monthly checkups. I think it must vary from hospital to hospital.

[Irisisme]

Congratulations on being NED but that isn't the end of it, is it? I've heard of so many people in your position

[Irisisme]

Did I really post a half written reply? Em, I was just saying it may be great to be NED but it is very common to feel 'down' once you get it. Yes, I've heard a 'melt down' is common too. Counselling may help you. I felt similar when all the chemo and surgery was over, I'm just on Avastin now and feel like my Onc team see me as 'yesterday's news'.

I checked out publications and read 'The Cancer Survivor's Companion' by Dr. Frances Goodhart & Lucy Atkins. It was a good reminder of why we feel lost after the worst is over, and made me feel better about not being as grateful as I thought I ought to be that my cancer was at least 'under control' .

Good Luck

Iris x

[ZenaJ]

Hi Em, I think it is normal to have 6 monthly checks. I had 3 monthly to start with but that was because I was on a trial. The trial involved chemo every week for 18 weeks instead of every 3 weeks. I've been on 6 monthly checks for at least 2 years.

Like you, I had concerns to start with but you can call if you're worried. I didn't have any symptoms the first time either and I don't think that's a bit unusual. Now I'm getting near the 5 years clear I'm wondering if they cut you off completely. I had stage 3C.

I don't think you have anything to worry about but I think it's natural to be concerned and it never quite goes away completely well it doesn't for me anyway.

We're all completely different and the more I read on this site the more I realise it but at least we know we have plenty of support from each other.

Best wishes, Zena J x

[Hidden]

Great news indeed. This however is the time you feel lost as you don't have the Chemo Unit to help you. So you have an option to find a Maggie's Centre or similar near you. It is good to speak with counsellors face to face and perhaps get a few reflexology treatments while you are there

[Sherrym]

Not sure. I was 3C & I was 3 monthly for 18months with bloods & examination. Now 4 monthly, 6 monthly when I get to 2 years. No scans as my onco thinks too many catscans pose radiation isssues.

Regular CA 125 is not expensive & prob give you peace of mind I think

[27-359]

No I was 3c and was told no checks unless I had symptoms. When I explained how upset I was they agreed to 3 monthly CA tests and then checks if that showed an increase. I think the policy now is more hands off as it has been shown to be more beneficial if treatment is not started too soon as the body needs time to recover after chemo.