my nhs provider has stopped doing ca125 tests, is this just local to salford or everywhere?

[tomary]

[wendydee]

Hi!

As far as I can see, from attending NHS meetings with doctors and support nurses as a ROCC, it is now quite normal. I understand that the use of CA125 in monitoring on-going progress, is now less likely to be used. It has been researched that the re-occurrence of symptoms is a more likely sign of cancer reactivating. CA125 is more likely to be used in the initial diagnosis and to check what's happening when women are having chemo. However, all sorts of things can cause a raised CA125, so the research found it caused a lot of anxiety among women who were being treated. I used to have a yearly one, when I got past my 5-year point, and I asked for this. I think you can still request it via your specialist nurse. I don't bother now, but always get any suspicious symptoms checked via my gynae oncology CNS.

Hope this doesn't sound too muddled, but I think the use of CA125 as routine checks is undergoing some changes. It may be different in different parts of the country.

I add .... this is just my understanding of the position, I am NOT a medical expert ;-). If you are in doubt, check via your gynae oncology dept at your hospital!

Love Wendy xx

[MargaretJ]

Have they said why? I have not had any problem. Is it your PCT that is cutting back on its budget? Lobby your MP, protest to your GP, it seems to be outrageous.

Margaret

[Tulsa]

I have had exactly the same experience as Wendydee. I was told that they would be treating ME and not a blood result.

They said even if my blood was raised they would still not treat until I was showing symptoms

So it would seem it is down to me to tell them if the cancer is back (their words) That seemed a bit scary at first but now I have got used to the idea it is just anther phase of living with OC.

I was told I could still have the test done by my GP if I really wanted but so far I have resisted.

Tulsa

[ladygooner-uk]

Hi all

I know that its not a good indicator for some of us (myself included) so I dont know why they dont offer it to those who it is useful for, I used to get very worked up until I had a recurrance which was only picked up by a CT scan (my bloods were 7- no different) but my onc said they would continue doing them, because if they didnt then they might lose being able to.

I think we need to stand up for the right to be tested if its useful for ALL ladies with oc.

sue

[ladygooner-uk]

that didnt sound right- I meant that we should ALL have the right to have the test- not that all need to be good indicators- sorry ladies!

[wendydee in reply to ladygooner-uk]

I was offered the option of having the test whenever I want it. I do it by contacting my CNS and she gives me the form and I ring her back to get the results. I haven't done this for a couple of years now. I think I would know if something has changed in what I'm experiencing in my body, particularly abdomen. I can self-refer back to the gynae onc clinic and have always got an appt quickly. Can't speak highly enough of this service!

Wendy xx

[Hidden]

I must admit, having a 3 month break, and knowing my canceer develops rapidly when it has a mind too, I was very scared when the onc said 3 months is ok. I asked my GP to do one mid-session, and she was in full agreement I could have one when I wanted it. My husband said, 'what is the point of having one .. it would only worry you, and you know they won't do anything unless you are bad', so I haven't bothered. It is true you know you body when you have this horrid disease, and it tells you what it wants. Mind you my onc doesn't examine me or anything, he only goes by the results of the ca125, and what I tell him, but thinking about it... this is the first time since my original remission 4 years ago, that i haven't had to see him quickly with problems!!

Bllod test on Wednesday, see him next Monday.... fingers crossed please.

Viv

[BusyLizzie in reply to Hidden]

My eyes are crossed too.

X

[Whippit in reply to Hidden]

Dear Viv I'll keep my fingers crossed for you for tomorrow and next Monday. I think I have a similar type of tumour which grows rapidly - my GP called it a non-differential type which is a little mutant spec apparently.

But it sounds good if you don't feel you have to se your GP this time. Let us know how it all goes.

Much love, Annie

[wendydee in reply to Hidden]

Hi Viv

Just wondered how it's going with you? Hope the appointments go/went? well ~ sorry, losing touch with timings and dates a bit at the moment

Love Wendy xx

[ladygooner-uk]

BIG DOH

[TinaWright]

I am still having my Ca 125 tested every 12 weeks, for me, it has proven to be a good marker, but its an individual thing and it won`t be used for everyone. This greatly depends how affected they think it is for you personally.

Greatly depending on how high the CA 125 was at the point of diagnosis (this is not used to diagnose), the test is usually done after a scan and concerns are raised. If your protein in the blood rises a lot, then lowers after surgery and treatment, then it will continue to be used to trace an early reoccurance. However, other methods will be used as well, such as pelvic examination and in some cases internal exams and CT scans.

I have my Ca 125 test done through my GP, this saves the drive to the city hospital each time. I then collect the reults and take them with me on my 12 weekly visit to the oncology clinic.

If the NHS decided this was not nessasary for me, I would have the test done privately - the cost for the blood test is only £20 a time. Well, worth it to some of us. I hope this helps solve your queries.

Sorry I am short on time this evening and haven`t yet had a chance to read other reply`s. I may be repeating advice here.

Love from Tina xx

[Whippit in reply to TinaWright]

Dear Tina, Your reply was interesting. Do you know how to get a CA125 test done privately? I've always said I would have paid for an annual test had I known how to get it.

My Oncology Hospital gives me a blood sample request form at each visit to take in a week before the following appointment. Mine is the sort of tumour that responds quickly to carboplatin but tends to come back quickly too. It seems to me doctors should consider us as individuals and if we feel better with a blood test it's only £20 so worth giving it to us for our peace of mind. The cost is minimal compared to the chemotherapy we're receiving.

I've also been told to look out for symptoms but as I didn't have any in the first place until my uterus was so crammed with tumours that they pressed on the bowel I'm not holding out much hope that 'symptoms' alone will be a great help. I felt a twinge one day, and within a month was rolling on the floor with agony as matter passed through the lower intestine.

I feel I'm groping in the dark looking for symptoms that aren't there so the blood test is quite reassuring.

Argue your case if you want the test! love Annie

[TinaWright]

I just want to add, that I had NO symptoms of cancer or that anything was wrong with me, unyet my cancer had spread to the bowel, the uterus, the appendix and cells were found in the omentrum.

Thanks to my raised CA 125 which raised alarm bells. How bad does it get before we do actually get symptoms from this dreaded disease.

If we don`t catch this early enough it may be past the treatable stage.

Sorry for sounding negative but I just lost my brother to bowel cancer. By the time he had symptoms of a reocurrance he was whay past the treatable stage.

With OV cancer there are very little symptoms for some of us, its a scary thing.

I`m not sure what the answer is - all we can do is put our faith and trust in our oncologists unless we feel we have something to worry about.

Never delay contacting them in between the follow up appointments, if you feel the need xxxxx

[Hidden]

Here I am praying that my ca 125 results this week will prove me wrong about what the beast is up to at the moment. But I fear I know my body too well, Have always been right in the past even pre diagnoses so perhaps the powers that be are right. Just hope for once that I am not!

Sue

[ladygooner-uk in reply to Hidden]

good luck

x

[Whippit in reply to Hidden]

Dear Sue

I'm keeping my fingers crossed for you and hoping for once that you're absolutely and completely wrong! love Annie

[wendydee in reply to Hidden]

Thinking of you Sue. Good Luck! I hope that you're wrong about your fears on this occasion.

Love, Wendy xx

[Hidden in reply to Hidden]

I've got the same problem.... when will you know? I'm bloods on Wed and Onc on Monday next, and away all the weekend to take my mind

off it!

Good luck

Viv

[tomary]

A big thank you to everyone who has taken time out to respond to my question.

I will go back to salford trust and be more insistant.

The "numbers" are not just important to me, but my children and my husband who are all srtuggling with this cancer far more than I am, take tremendous re assurance from me having a simple test with a quick result that is easy for them to understand.

[ScardyCat40]

This is worrying tomary as my mum lives in Salford and I think she has some of the symptoms and I want her to have the CA125 test. I live in Manchester and I'm still under the care of The Christie so have a CA125 test every 3 months for me it has been a good indicator of what is going on with my cancer

[Hidden]

I would be very upset if I was refused CA125 tests. Each time my cancer has returned I have been alerted to it by my CA125 result. I had/ have absolutely no symptoms and don't know how far it would have to spread before I experienced symptoms. I argued with my oncologist at Colchester about this issue - he would rather not do CA125 regularly but wait for symptoms but I insisted.

Now I am under the Royal Marsden on a trial I am having CA125 taken every week as part of the trial and I find that very reassuring. Even when it was still rising at the start of the trial I still wanted to know.

I realise it is not a good marker for everybody but for three years it has been a good marker for me. My oncologist used to say "don't worry about the numbers, you will 'know' when the cancer is back". But I never have just known. Each time it returned I was in really good health with absolutely no symptoms.

[MargaretJ]

My new GP has just informed me that, for the last year, it has been national policy to use CA125 as a diagnostic tool as well as a monitoring tool. He was very surprised to hear that some areas are no longer using the test! I suggest that you make a fuss!

My CA125 is right down to 6 and I feel great!

Margaret

[Whippit in reply to MargaretJ]

Brilliant news - on all counts Margaret. Thanks for telling us about the CA125 tests as a diagnostic and monitoring tool. Keep on feeling great!

love Annie x

[MargaretJ]

Aparently all women over 51 who have abdominal pain of any kind must now be given a CA125 test.

m

[BusyLizzie in reply to MargaretJ]

Great. I was 44 when diagnosed! Time for another revolution. Up the bolshies.

X

[MargaretJ in reply to BusyLizzie]

Here here! What is so magic about 51?

[RuthPOvacome]

Dear All

This is a very confusing situation. As has already been mentioned research has shown that you do not jeopardise things if you wait till you have symptoms rather than starting treatment as soon as your Ca 125 starts going up. This is meant as a means of reassurance, but for some people particularly those who had no or very few symptoms before diagnosis this actually causes more anxiety because they aren't sure either what they are looking for or it causes them to worry with every twinge ( although of course anyone who has had cancer will do that to a certain degree). It might help by saying to your consultant you undersatnd the reasoning behind the policy but it would help your overall health it was done. The other alternative is to ask your GP or ask your local private hopsital if it can be done. If you would like to discuss this more do give Ovacome a ring on 08453710554 Mon- Fri 10-5

Best Wishes

Ruth

[Eleni]

Hi!

I was told that I would not be having CA125 tests before I started my 3 month follow ups and queried it. As many have said on this blog, I was told that the oncologists do not simply use the blood test as a marker and that the results can fluctuate and hence worry me. I insisted on having the test however. The oncologist expressed the opinion "I don't know what you want me to do with the results?" to which i said that assumedly if they suddenly became 1000, he'd do further exploration. He admitted that he would....so I get my blood test. It's 15 and my mind is at ease. If you want a blood test to ease your mind, demand it! I'm not someone who will jump to the worst conclusion is th results are high, but I didn't know I had OC before and so I feel a blood test can be helpful - for me..

Eleni x

[debsieeg]

Hi tomary

I've also had my CA125 stopped, I was told that the research findings didnt show any proof that the tests were relevant to cancer diagnosis so have been stopped