What's going on????

[vipervictoria]

Hi, I am new to this community, diagnosed a few tears ago, subtle symptoms, etc. etc. etc.

So, if my CA125 rises, what should I do? Worry, wait for the next test, whatever. Very confused of Scotland please help.

Thank you. Victoria x

[charlie12]

Hi Victoria

Welcome.

My consultant uses ca125 results , plus the results and findings of any imaging or exam and how I am feeling to assess whether or not there are any signs of a recurrence. It is not left entirely up to me to decide what to do with on piece of information

Are you concerned about a possible recurrence yourself ? If so how raised is your level and what was it before you were diagnosed ? Are you not under regular surveillance by a specialist or your GP ?

Take care x

[vipervictoria in reply to charlie12]

Thanks for your help. Vx

[Hidden]

A large rise in CA should trigger a CT scan, if its only a small increase they would prob retest in about 6 weeks before scanning. Remember scans can only pick up tumours which are approx 1cm or larger hence why they may wait if the CA value is low. Love Paul xx

[vipervictoria in reply to Hidden]

Only a small rise - may be because I got a tummy bug. Thanks Vx

[Whippit]

Hi Victoria

Welcome to our friendship circle.

I'm not sure where you are on your journey and whether you've had treatment after diagnosis. I'll assume your question is about being in remission after treatment.

The jury is still out with regard to monitoring CA125 for patients in remission. Some oncologists say it isn't a reliable indicator and doesn't extend life so it's not worth worrying about. They go on how their patients are feeling and whether side effects are developing. I have advanced ovarian cancer so it's likely it will return - on average within a year of finishing chemotherapy. This was the case and the CA125 test shows that protein levels have been rising for nearly a year but I have no symptoms so we are on a wait and see. No point in starting chemo too early as there are issues re quality of life on that score.

I rather think it should be the patient's choice as to whether they have CA125 tests. If it makes them feel better then it's all to the good. If women are going to get stressed and fixated about it then best not go there. I've been happy to have the CA125 test and I'm not particularly concerned that it's climbing steadily. It's given me 10 months warning to think about the future and to consider what treatment and what resources I need to continue having a good quality of life for as long as possible.

I'm sure you'll get loads of other helpful and supportive posts that might help you through this very confusing stage.

with love xxx Annie

[vipervictoria in reply to Whippit]

It is very confusing, isn't it? Vx

[Whippit in reply to vipervictoria]

Hi V, You're absolutely right. Treatment for ovarian cancer is confusing because it's beyond the boundaries of known research and they're still working on a treatment plan or a cure.

I find it a bit annoying that our destinies are decided by value-for-money over additional years of life. More recently the NHS has got round to an expression that includes Quality of Life Years which seems to me to be much more relevant.

At least the one consolation with our rare and confusing cancer you can to some extent be the master of your own destiny. We can apply to join clinical trials, ask for a second opinion, and we can have some input as to what chemotherapies to try. I'm in for my second lot of chemotherapy quite soon and have the choice of carboplatin and paclitaxol or carboplatin and caelyx. (They've all got frightful names and the NHS should bring in an image consultant to address this.) Centres of excellence are also developing radical surgical procedures so this is also sometimes an option.

Caelyx doesn't take your hair off but it generally makes for big blisters. Taxol makes your feet and fingers numb. Not much of a choice really is there?

I think if you insist they will do the CA125 test but just don't get worked up about the results.

Sending loads of love xxx Annie

[Zannah]

Hi Victoria,

As you are obviously worried why not have a chat with whoever is monitoring your CA125 and explain your concerns. You may find it useful to write all your questions down and go through your list with them. That way you won't come away thinking you have forgotten to ask something.

I hope that you can put your mind at ease.

Love

Zannah x

[vipervictoria in reply to Zannah]

Thanks. You are very helpful. I have done at that and they all say, do not worry. Vx

[wendydee]

Hi Victoria, like the others said, it depends where you are in your treatment and what your experiences have been. I only ever had ultrasound scans and CA125 tests. Have a look at the Ovacome website on ovacome.org.uk You will find lots of info and contact details of a helpline and email Question service. There is also info on the fact sheet tab, under 'resources' I think

All the best

Love Wendy xx

[vipervictoria in reply to wendydee]

Yes. Been there, done that, got the t-shirt... Thanks. Vx

[Izzystep]

All excellent advice from the replies you have received. My CA125 has been on a steady increase since finishing my chemo in February 2013. My oncogist ordered CT scan which was done today. I have my follow up next Thursday. I am feeling well st the moment and if the advice is to start another course if chemo I will gave a big decision to make. I agree with Whipit. I am going to see how I feel and look at my quality of life now and what it was like during chemo and how it may be without another course of treatment. Best if luck in whatever comes but this site is a very good support and full if useful information. Izzy

[Whippit in reply to Izzystep]

Dear Izzy, I can only hope the results of your scan are positive. I'm really glad you're feeling well and you seem to be at one with yourself which is a great asset. I'm keeping my fingers crossed you get good news. xxx love Annie

[vipervictoria in reply to Izzystep]

Thank you for responding to me. Vx

[MargaretJ]

Hi Victoria!

Up til now CA125 rises have been a good marker for me my consultant has ordered CT scans when the level rose! This time, however CA125 has not risen but I have symptoms and the scan showed a couple of small nodules so the consultant thinks I have small patches less than 1mm whic account for the symptoms! Hence back on chemo next week!

I know my body and report to my GP, consultant's secretary and/or my specialist nurse when I begin to feel unwell! They take it from there!

I am lucky to live in the area covered by St James' Leeds which is a centre of excellence!

Good luck and thinking of you!

Margaret

[vipervictoria in reply to MargaretJ]

Yes, I've heard a lot of positive outcomes from Jimmy's. They have one of the top oncologists in the world there, I believe.

[ricky23]

Hi I don't often comment on here although I do read !! My Ca125 was 3000 on diagnosis after my op it was 7!! The last 2 have raised slightly now up to 10. Not much I know but is it a change I should be worried about... I don't think so but its going up!! I am due to have CT scan and feel that may reassure. Its a complicated thing the CA125 but I think worrying can make you so stressed. Good Luck x