No CA125 numbers?

[Alibee2]

Hi there - almost everyone here is monitoring/ being monitored for CA125 levels. In my 1st oncologist appt he told me 'we don't do that here - we work on symptoms'. It is really worrying me that I won't know how my levels change through my treatment stages and will have nothing concrete to keep an eye on? He tells me CA125 can give so many false positives and lead to unessessary treatment - my cynical self says 'is this a Scottish NHS cost cutting measure?' My symptoms were so nebulous - and some can't return because of the hysterectomy so I worry that I would miss a reoccurence until it's well advanced Any thoughts welcome ladies.

[Rosewall101]

Dear Alibee, I can't really answer your Scotland query. But I do understand your concern about not doing ca 125 blood tests. Ovarian cancer symptoms are so vague and similar to other complaints. I would push back on this with the hospital.

My ca 125 was taken before I was diagnosed. It was 35. After my op it was 56. It's now 9. So normal for me is very low. And going forward after my chemo has ended I'll know that anything riding up into the 30's will mean more investigation and scans from the hospital. For me it's a marker and a part of the puzzle. Though I agree, it is not reliable or even indicative on its own.

I would push the hospital and even go privately if required. It's a simple blood test, won't be expensive and I would want a record myself.

T. X

[Jintyp]

Hi Alibee don't think it's a Scottish thing. I'm with Beatson in Glasgow and have my CA 125 done every four months as part of my monitoring. Think I would be questioning onc again! X

[Katmal-UK]

Hi Alibee

I would definitely be questioning the oncologist about your CA125. Mine is very indicative of what is going on with regard to my OC. Even a small increase to 65 meant I had a recurrence and it's never been higher than just under 700. I would not be happy to be left without this being checked and having to wait for symptoms, especially bearing in mind I have NEVER had a symptom of OC and yet I was diagnosed and had two recurrences. Maybe it's worth speaking to patient liaison and explaining how you are feeling if you get nowhere with your oncologist. A simple blood test to reassure you is not a lot to ask.

Do let us know how you get on. Kathy xx

[Yoshbosh]

Do you think maybe your oncologist doesn't want you to get too worried about it? As in, they do it and know the number, but rather than have you fret about it, they don't routinely share it with patients? I can't imagine they themselves don't even run it as part of your normal blood tests.

[Hidden]

Hi I think the same as the others I would be questioning why they aren't monitoring your ca125 levels, my oncologist says it is a good indicator for me what is going on, I know that isn't the same for everyone. It's worth a chat to him/her. Xx

[minard]

Hi Alibee - yes I agree with Yoshbosh that your particular consultant is obviously trying to "shield" you from any concerns. That doesn't work for many of us though and I guess you're one of the ones who like to know too. I'm being treated in Scotland and I do have my CA125 levels monitored and they have proved useful in picking up. Like Katmal, I've not had any symptoms at all, either first time round or with my recurrence, so without the CA125 I'd have been going on in blissful ignorance. (but hey - what's not to like, some might cry...?). For me, it's vital to have at least some knowledge of what's going on inside me though.

I'd explain clearly at your next appointment that for your sanity it's really important to have these readings taken, and more importantly, shared. Perhaps you could go through your GP? Mine gives me my reading before my oncologist appt so I'm a little prepared for what might be said. I really don't think you should have to go private for this basic NHS service, even up here in Scotland! Let us know how you get on

Caroline x

[Lyndy]

Hi Alibee

My Onc does the CA125 and then just says to me 'it's ok' or 'it's fallen a bit' he doesn't give the reading unless I ask. So that might be a compromise. If they routinely don't do the test then ask them which studies support the decision not to test? You are a partner in your care and no one seems to have consulted you.

Lyndall x

[Hidden]

If they dont want to do the 125 and you are off treatment, you gp would oblige should you be symptomatic. I agree that they now tend to think that we worry about results and that is worse for us so ct scans and bloods are no longer done routinely in Ireland when off treatment. Yes the cynical part of me also says costs but if I am worried about anything I can call the gynae liason nurse and get an apt or visit my gp best wishes

[Lily-Anne]

It only leads to unnecessary treatment if they use it as a stand alone tool. For me if the level rises only with no dips then it leads to a CT scan. The bit I don't like is wait until you are ill and we treat it. I would like to know where and what the progression is, not necessarily for any treatment but just for me.

There is some research doing the rounds about no CA test no CT just symptoms only with OC I think that's risky

I think it's always about money

LA xx

[Tracex]

I had my ca125 results everytime i went to see oncologist and thats how my reccurrance was picked up as my bloods went from 21 to 180 and then had to have scan and my ca125 had jumped to 350... so sounds daft i was pleased as it was picked up early but my oncologist did say from my first course of chemo after debulking may 15.. that if at anytime it doubled or increased they wvould scan me straight away.. but i do think we depend on this test as i do but not sure if its a good thing/bad one as sometimes i feel like im living on the edge hope'ing my ca125 is all ok hugs xxx

[GBIRVMIC]

Hi I would question too. I had no symptoms of OC and only went to the Doctor as a recent purchase of a mini trampoline I kept having a stabbing pain on my right ovary. Fast tracked later to be diagnosed with 3C OC and CA125 was 700 before surgery, down to 47 after surgery then sitting at 5 after 6 cycles of chemo. It's a marker and keeps me happy knowing it hasn't risen. Good luck love Michelle x

[Choski]

I was told the same thing the day before my last chemo (July) and I politely but very firmly said I wanted my CLA125 blood test done as it's about trends now - if it goes up over three consecutive readings then I'd want additional tests. My reading was only 30 when I was diagnosed , it went down to 13 and I have my end of treatment scan results and CLA blood test result on Thursdsy if thus week.

I had to stick to my guns or else I'd have been out the door worrying as you are now. I actually posted here about my experience as my new Onc didn't even want to give me an end of treatment scan either! I had both last Friday. I wrote a letter of complaint and have had apologies.

Take a deep breath and if you want the test ask again and keep asking.

Take care

Clare X

[Kim1958]

I agree with the others. I'd push for having it done. It's a simple blood test and is useful in monitoring what's happening during treatment. If your oncologist won't do it ask your GP. Like others, I didn't have symptoms until I had stage 3C OC. The CA125 is what set the ball rolling for my cancer treatment. Best of luck to you Kim xo

[Sherrym]

It is true that CA125 does NOT always pick up disease. However, I am BRCA1 & had no syptoms whatsoever last June. Because my bloods are done regularly my disease was only picked up by the CA125 test! Very late in the day though I must say-I was already stage 3C so it should have been picked up in the test a few months earlier.

So, perhaps he is right to a degree but I am now monitored with it & I'm the absence of anything better, I would be v upset if it were stopped.

Good luck & I'm doing well at the mo.

[Howick01]

I will ask about the CA125 monitoring this afternoon as I am a patient rep for gynae cancer.I am surprised that they are not monitoring the levels while you are having chemo.Mine was done by my GP so perhaps that is what you have to do.When I stopped chemo I was given the choice to have mine monitored which I declined as I feel it is better to wait for signs and symptoms.

I do not believe it is about money -it causes a lot of anxiety.

Take care x

[Tesla_7US]

Alibee2, I live in the US. Monitoring CA125 every three months after chemo is completed is the cornerstone of treatment here. I would make a big stink about this and insist it get done. It is negligent to not do so!!! How the heck are they going to catch a reoccurrence early enough to help you? If you have to pay for it yourself, I would do so, just for your own peace of mind. Good luck! Tesla in Seattle. Washington, USA

[Teresa_K]

My Gynae/onc discussed this with us at last meeting. Research paper presented at some recent conference, and sorry to be clinical but end point doesn't appear to change for the better with 3 monthly monitoring. He is thus of the opinion that there is little medical benefit for doing 3 month test. But if I wanted it done he would ensure it was done. Like Howick1 above I think the stress of waiting for results etc. can be detrimental so after my last chemo and follow up scan I will as my consultant says go live my life. I know if I have any concerns I can plug back into the system.

Everyone is different though.

T

[IrishMollyO]

Hi Alibee

I too have an oncologist who doesn't place much emphasis on CA125 levels and will only finally go on scans and symptoms and I don't live in Scotland !

This is despite having a count of over 8000 in 2011 which returned to normal at end of treatment . My next CA125 was 1 year later and no more until 2014 when my GP did it for me as I was getting anxious. By the way the reason most oncologists don't do it is that they believe the opposite and that a rising CA125 will make women more anxious and they will be insisting on surgery or chemo

too soon. Studies have shown that treating too soon makes no difference to the outcome . That is why we have watch and wait.

Having said all that I am one of these people who gets more anxious if I don't know ! I have had a few heated arguments with my oncologist and my CNS. If I was them I probably would feel frustrated with me ! However like you it's difficult to tell which symptoms signal a recurrence or are just age related. You had surgery so some symptoms cannot be the same . CT scans are a good indicator which we do agree on ! False positives and false negatives are a fact and that is why it is not a routine screening test.

I finally recurred in Mar this year when a CT scan showed up swollen peri aortic lymph nodes. After a further scan in July I started chemo 3 weeks ago.

I hope I haven't confused you more. In the long run we must place ourselves in the hands of the experts and trust their judgement. I am not an oncologist or have any medical degree but just someone who wants to know all about this illness and who believes knowledge is power. Some people don't want to know anything and just let the medics get on with it. There must be a happy medium ! I wish you all the best got the future

XXX

[Caroles1]

I agree all of the above,I had my CA level done all the way through treatment and now every 4 months,I had symptoms,sickness,not hungry,bloated stomach and ascites removed and my CA was just over 1000 before surgery, now down to 5 after chemo.

I would worry wether they did the test or not, but at least I know they are monitoring me,so, I would ask for it to be done, if it puts your mind at rest,it's your body and your illness and worry and stress isn't good.

Good luck

Carole xxx

[Amyjo1969]

Mine was always very low, it's not a good indicator for all of us. However a base line number is always good to have so you can follow it throughout you treatment. Scans are the most important indicator. Symptoms are to vague. Can you get another opinion?

[koffeekat99]

I don't have any monitoring and I'm on the 'wait for symptoms' track. However, I also have a very rare type and it is considered to be untreatable. As a result I said that I didn't want to spend lots of time in hospital if I feel well enough to be enjoying life. So I think on that basis neither me nor my oncologist have considered it necessary to do the CA125 test.

However, I hadn't realised how widely used it was as a monitoring tool for recurrence until I read this post. I thought that it had been deemed to be too untrustworthy on its own.

It has made me think that I will discuss it with my oncologist at my next meeting. But rather to ensure that I've explored it as an option as opposed to being worried that I'm missing out on a key indicator. I was of the understanding that when I get symptoms again it'll be straight to CT scan anyway, but I'm now wondering if I should be paying more attention to the CA125 results too.

I think I also assumed that because we know that I've still got cancer (they couldn't get it all in surgery and it was deemed to be unresponsive to the existing chemotherapies) then it wasn't really going to tell us anything. I wasn't aware that it can be used to determine the extent of the cancer too.

[Beckyjh]

Similar to what other people have said - my oncologist is one of the ones who has done research into the benefit of regular CA125 testing. Studies apparently show that in cases of recurrence there is very little difference in prognosis whether treatment is started when CA125 starts going up, or treatment is delayed until symptoms start to present. I finished chemo October 15 and I haven't had any scans/ blood tests in that time, just abdominal examinations. Having said that , we've decided that at my next check up I will have the test as it will be over a year since treatment - don't know how I feel about this yet!!!!

[Dollysmum]

Wish I hadn't read this thread. CA125 is haunting me. I met with my lovely Clinical Nurse today and she reiterated that there would be no more tests as my scan showed 'clear' in June despite a CA125 of 210. It was 2400+ prior to treatment and came down after each chemo, but seemed to plateau after surgery,

I had four rounds of carbo/taxol prior to surgery which was successful with all but less than 1cm of disease remaining followed by two more blasts of chemo to mop up. They are putting the above normal range down to inflammation as CA125 is an inflammation marker, I believe. I stlll get twinges from the operation in April, but again, reassured that this is normal. Debulking is a major procedure and there are many layers of stitches involved with much healing to be done.

I'm to watch for symptoms but as I didn't have any prior to a collapsed lung in October of last year, I'm a bit sceptical and obviously very worried about that.

I'm thinking I may ask my GP for a test prior to meeting the Oncologist again in November. If it's raised then something is likely amiss. If they scan me though and there is still NED what do I do then?

In all of the 'Life after Cancer' type literature I was given literature today, nowhere does it mention the benefits of further CA125 testing. But rather the focus is on positive steps to enjoying life.

Because there is nothing else out there for us, we have naturally become reliant (or in my case unhealthily obsessive) about the measurement.

In fairness, I don't think it is about saving money because chemo costs far outweigh that of blood tests. My logical head says that even if there was some disease left hiding in there, exposing me to more highly toxic chemo at this point might lead me to become resistant to the platinum that saved me. The Taxol certainly has left it's mark with neuropathy and I doubt they will give that to me again. I certainly hope not.

Perhaps it's the protocol of my hospital which is Clatterbridge at The Womens in Liverpool? Maybe we could do comparisons by starting a thread for each hospital? Then we could monitor trends..

CA125 is a curse and I pray that some form of screening other than this is developed soon.

Debs xx

PS just to add, CA125 can't be 100% reliable otherwise why do so many women have a significant increase in the marker during Avastin?