Stage 1c2 dx in jan 17.

[Anastasia7410]

Good evening still trying to come to terms with this dx - finished carbo/taxol in june 3 monthly check ups - no blood tests or scans scheduled - finding it hard to come to terms with no tests etc .Feel very anxious at times but back at work trying to be 'normal" but so scared of the future. Any one else in my position - how do you cope thanks

[Lyndy]

Hello Anastasia

I'm NED at the moment...also on 3 monthly checks but I was stage 4.....

I finished chemo nearly 2 years ago but did Avastin for a year. I absolutely get what you mean about feeling in free fall after all that intense treatment. I did the 'Hope' course when I finished...which, although I hated it at the time, did help me transition. Of course the worry never really goes away but I try to use that as a way to really live for the moment...hope you find a way to do the same xx

[Anastasia7410 in reply to Lyndy]

Thankyou for your advice Lyndy - you sound like an amazing lady - free fall is the right words - this road is such a roller coaster of emotions - its so exhausting trying to get back to normal or a new normal which I dont think psychologically I am ready for xx

[Hidden]

Welcome, Anastasia.

Hoping you find this forum a source of friendship and shared experience.

It does take time to come to terms with diagnosis and I think we’d all say that we never do, all the time.

It sounds as if , though 3 monthly checks will be reassuring, you feel vulnerable with no blood tests (in my experience they do scans only if they think there may be something to see based on bloods) and I can understand that.

There’ve been a lot of discussions on here about what form check ups should take (use the search box top right but make sure to press the return key after).

It might be worth asking why they don’t do them.

I was 1c3 at diagnosis and had carbo alone but CA 125 tests every 3 months. I am certain that without them I’d be none the wiser when the beast raises its ugly head as I’ve never really had symptoms...(on the other hand I might not have had 4 different chemo regimes in the last nearly 7 years... but then no-one really knows whether I would be as well as I am if I hadn’t)

Nothing like OC for making you realise medicine is not always a very exact science and that much is not known!

all the best x

[Anastasia7410 in reply to Hidden]

Thanks Mac for your response and advice- it certainly is hard to see so many different way of handling this and making sense of what is going to be right for me - I originally went to the GP in june with bloated stomach and was told it was menopause and to relax and so every time I had something a bit out of the ordinary just thought it was my age again so not picked up until december - so lost a lot of confidence with my GP going forwards I know this is very common Thx againx

[Petrolhead]

Hi

I was 1C1 12 months ago. (Mucinous type)

My local oncologist wanted watch and wait (Also had chemo) but as I did not have symptoms either I was not good enough for me. I went to the RM for 2nd opinion and agreed a monitoring regime. I am having bloods every 3 months and scan every 6 months. Will lessen after 2 years. It is very reassuring for me. Try putting monitoring in the search function as there has been some good threads on this.

Did the CA125 give a good indication for you? Maybe if it did your GP could be willing to order it for you. Just a thought.

Regards Fay

[Anastasia7410 in reply to Petrolhead]

Thanks Fay I cannot have any confidence in hoping that I will know if theres a problem- the first time was devastating enough knowing that it had been there nearly 6 months. I felt just like a statistic rather than a person at my last checkup - origimally the CA125 was 50 them at the end of treatment I was told it was 7 - I'm going to have to get over my anxiety of going back to tbe GP and see if they can do me a test before my next checkup - I will also reasearch a bit more thanks again x

[Caleda4]

Hello Anastasia, I felt just like you after finishing my treatment in March 2016. I am now on 6 monthly checkups,of which I had one during Sept & my next one is March 2018. No scans,no blood tests,but so far so good. My Oncologist is very good & has said that if I have a problem then to get in touch straight away & I will be fast tracked. It is hard I agree because you somehow feel as if you are walking along a wall & when are you going to fall off. Mostly I am ok but sometimes I think about things,but then eventually get on with my life & just hope for the best. If I did have scans etc. then that is an ongoing worry until you get results so my feeling is keep the positive head on as much as you can.

I hope you are enjoying a good weekend. xxx

[Anastasia7410 in reply to Caleda4]

Thanks Calenda for your message it really is so reassuring to know i'm not on my own with this - its really great to hear youre doing so well- I tend to be ok during tbe day - its in the middle of the night that I have a problem with things - I'm going to have to find whats going to be tbe lesser of the two evils for me going forwards.thx again

[27-359 in reply to Anastasia7410]

Hi. I was also told no blood tests or scans ( see my previous posts) but when I explained to my oncologist how stressful I found this, he agreed to three monthly tests. Since the NHS is supposed to be giving person centred care I think this is reasonable.

Jenny

[Anastasia7410 in reply to 27-359]

Thanks for your message 27 I"ll have a look at them - great to hear that you got a regime better suited to you - just wish they had discussed it more at the appoimtment - I"m obviously not on my own ! Thx again

[triplets]

Hi Anastasia I was dx stage 1c2 in July 2016. Had full hysterectomy and 6 cycles of carboplatin. I too am on 3 monthly reviews and have been told no scans or bloods unless I report symptoms. I get a lot of ibs always affects me when I am stressed then I panic its the dreaded illness come back. I can understand not offering regular scans as too many isn't good for you but I would have thought 6 monthly bloods was reasonable. In my case my CA was not reliable, it was 13 at diagnosis! I have a review in Nov and am going to ask for bloods again. Good luck to you, stay well. xx

[Anastasia7410 in reply to triplets]

Thanks triplets for your message its a difficult one isnt it - it makes me feel better though to know I"m not on my own and its natural to feel like I am doing - I hope as time goes by I will have more confidence and worked out a regime that helps me deal woth tne anxiety and not feel so vunerable it sure is a difficult journey thx again hope you are well too x

[triplets]

That's a very good posting Caleda I need to learn from it and stop panicking as I make my ibs worse! x

[Caroles1]

Hi Anastasia,

I too was 1c,diagnosed August 2014,full hysterectomy Sept 2014,followed by 6 months carbo taxol. I had a very high CA125 and bloated stomach due to ascites.

I was lucky enough to be diagnosed early and due to my husbands work was lucky enough to have the best treatment in Harley Street,which continues but we now pay for.

I have 6 monthly gyno appointments and 3 monthly blood tests.I also had my last scan a year ago.

We all get nervous about our checks and we all feel like we have been set adrift after the end of treatment,this is normal.

I think we all deal with it in different ways,me, I take the ostrich mode,bury my head in the sand and keep busy.

I am retired,but I can honestly say I have never been busier, I have a son and daughter and 2 fabulous grandchildren, I look after them,we have a boat,I go on holidays and do lots with friends, last Friday I was at a Nile Rogers and Chic concert at the O2 and spent the night singing and dancing.

My answer to you would be go on some support courses if you feel you need it,but try not to live your life round cancer,since that is counter productive, hopefully it won't come back, but if it does,deal with it then,don't ruin the good times worrying about it.

You will always get loads of support here,

Carole xx

[Claire65]

Hi Anastasia

I was diagnosed in October 2016 with Stage 1C, but no grade given. I was very lucky to have been diagnosed so early as the only symptom was post menopausal bleeding. My CA125 was only 26 so not good marker for me.

I had TAH then six cycles of carbo/taxol which I finished in March, just four weeks before my eldest daughter’s wedding. Youngest daughter got married in September so a busy year.

I am now on three monthly checks, but only have blood done. My oncologist will only scan if I have any symptoms.

We all worry whatever stage we are, but we do have to get on with life.

I have found in the last year that instead of thinking of Ovc 24/7 life is returning to my new ‘normal’. I do of course, get anxious the week before my check up in common with all the other ladies on this site. I cope by trying to count my blessings, being cheerful, working and having a holiday to look forward to.

Courses are available after treatment which you may find helpful. I haven’t been on one as they clash with work.

If you are having a down day, the ladies here are always very supportive.

You will find your new ‘normal’ as well, get engrossed with life and realise that you actually have not thought about it for a few days.

Wishing you all the best

Claire x

[Anastasia7410]

Thanks Claire I am getting a bit better as time goes by - so glad I went back to work to occupy my mind - great to hear your doing so well so it is possible that I will feel better with time thanks again x