Monitoring for a recurrence

Hi Everyone, I really need some advice. My mum is stage IV and tomorrow is her last chemo ( of 6 with interval de bulking) We have been told that she most probably will be in remission after her last chemo although we won't know this for definite until the scan a few weeks from now.

My question is, how do all you ladies on here monitor for a recurrence? Do you have Ca125 tests - if so how often? And do you have regular scans as well? The reason I ask is that Mum's oncologist ( we are in the uk ) has told us that they will do neither of these as there was a big trial that showed it was of no benefit to check ca125 levels in patients as it meant that ladies were being given chemo sooner than needed and it doesn't improve long term survival. Mum has been told that she should "listen to her body" and that they would only treat a recurrence if she has active symptoms. This worries me greatly as mum had no symptoms at all with her oc - she only had a swollen tummy and by that time it had spread! Could this not happen again with a recurrence? I don't like the sound of doing no tests at all- it puts a lot of pressure on my mum and I think it will make her paranoid. Please give me some advice - what should we do?

14 Replies

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  • Hi Flyhigh,

    Glad your Mum has made it to the end of her treatments. She's lucky to have a daughter who is looking after her interests so well!

    I was monitored for 5 years then I asked for a yearly CA125 just to check I was still OK, after the five year mark had been reached I no longer do this.

    I have also been told about it not being a really reliable way of monitoring, and our local doctors and oncologists no longer use it except to check on an existing case or during sessions of chemo I think. It may be a psychological safety net, though for a few months just to help your Mum to get used to being in remission. Try having a word with her specialist nurse. That was who gave me the form for my blood test and rings me with the results. They seem to understand the need for reassurance more than the docs do! I didn't ever have any scans after I had had my op. Mind you, that was 9 years ago now. Last year I had a scare, with strange symptoms in my bladder and was seen really quickly, I was OK, but I had an ultrasound scan, a CAT scan and a cystoscopy investigation all in a matter of a couple of weeks of seeing my GP and explaining why I was so worried. With your Mum's history, if she has any fears, they will probably investigate it as a priority.

    As far as symptoms, I look for the following: swollen tummy, feeling full when I've not eaten a normal amount, tiredness, pressure on bladder or bowels, low pain in my abdomen, just feeling unwell with no explanation. I know these all seem very vague but that's how it is with OC. The symptoms need to persist for a number of days .... we all have funny unexplained off-days sometimes.

    Hope this helps your Mum a bit. We all feel very vulnerable and anxious at first, and the fear never goes away completely, but knowing you can refer your Mum back, through the oncology dept or the specialist nurse, makes it all more reassuring. If she's feeling paranoid, let her put a question or a comment on here, too. She'll be amazed at the level of support from some really helpful, brave and wise women!

    All the best to her, and you too

    Love Wendy xx

  • The 'listen to your body' instruction makes me furious!

    It comprehensively disrespects us as patients, and simply shows that the medical profession do not know what we are dealing with in our journey through this disease. Many of us have had massive surgery which has cut through muscles and nerves that now all have a long recovery period. This also puts strain on other parts and sets of muscles, causing pain and new sensation. How are we supposed to know how that feels as opposed to how this cancer (which is notoriously asymptomatic in many of us) feels??

    I thank heaven that my oncology dept still use ca125 and scans!

    Right: rant over (sorry!!)

    Your Mother needs to return to her GP and set up regular ca125 checks. I had these every 2 months in the first year after chemo. The GP can get the results to you in 24 hours (and they are cheap tests - c.£20 a time), and if there is an upward trend the oncologist doesn't have to prescribe chemo. However, your Mum will derive immense comfort from them if they remain low. As for scans, they follow if needed, although I have an annual one as my oncologist says he needs bloods, a scan and an examination to diagnose ov. ca.

    As you can tell; I feel very strongly about this as I see a situation in which (once again) the NHS fails to look at the situation from the patient's point of view, and take into account the effect that continual worry and fear has on depleting the immune system and making our risk higher. As for research into these things and 'not improving long term survival' - this always renders me apopleptic as it is the most ridiculously inaccurate and unscientific excuse for withdrawing services.

    We have to be our own advocates in this. The 'research' is dangerously useless as it leaves us swinging in the wind, worrying and making ourselves ill. Take control, and demand what you need!!

    Very best wishes,

    Isadora.

  • Hi Flyhi

    My chemo finished in December 09 and since I have had three monthly checks with my ca125 checked each visit. My cns is always at the end of phone if needed and always says if I am at all worried I can go straight back to clinic - so I don't have to go to see my GP and ask for tests.

    Isadora is right - surgery and chemo wreak havoc on our bodies and I still find it difficult to feel confident in understanding and interpreting my own health. Talk about neurotic :)

    I find this posturing of 'you will know' quite odd and difficult to understand - prior to my own diagnosis I was back and forth to the GP telling her that there was something wrong and her response was 'it's your age....' I was 46 years old when I first saw my GP and I was 46 yrs and 50 weeks and 2 days old, when I was finally diagnosed. I know it isn't unusual for such a long delay in diagnosing ovca, but it does make me seethe with anger.

    I also understand that the research your mum's consultant is referring to is fairly recent - it might be worth checking if the NHS protocol has been updated or if this is just a local decision. the advice on the Cancer research site states:

    After your treatment has finished, your

    doctor will want you to have regular check

    ups. Your doctor will examine you and ask

    how you are feeling, whether you have had

    any symptoms and if you are worried about

    anything. At some visits, you may have

    blood tests, X-rays, CT scans or ultrasound

    scans.

    If all is well, your appointments will gradually

    become less and less frequent. For the first

    couple of years your check ups will be

    every 2 – 3 months. After this, you usually

    have 6 monthly appointments for up to 5

    years.

    However, given the stage of your mum's cancer I would insist that her ca125 is check frequently - and then if and it is an IF the numbers start to rise she can make an informed and timely decision about what treatment plan to follow.

    I hope your Mum remains well and recovers quickly from the chemo experience.

    Becky xx

  • Hi Flyhigh

    I read your question with interest as I have just had the exact same experience a week ago. Finished my chemo last December and was at my 3 month check. I asked how I/we would know if the cancer came back and the registrar said I would tell him. He said I would have the same symptoms as before (despite the fact I was picked up by bleeding from a fibroid and now have no uterus!) He then quoted all the symptoms I could get that would tell me but like you I felt that surely by the time you are having these symptoms you could be further down the line than you would want. He decided to do a CA125, I think to placate me, and told me not to get hung up on the results. I know that no one can look into the future as to whether your cancer will return but I certainly, like you, felt unsettled after the visit. I suppose it helps a little that this seems to be the general opinion about after care even though it is not so reassuring for us.

    Hope all goes well with your mum.

    Tulsa

  • Hi Flyhigh.

    This is a intersting question for me as I was caught up on the research re the reliability of CA125 tests. I had chemo in 1998 and was then seen by my oncologist (who is a oc expert) monthly then 3 monthly etc. When the chemo finished he told me that the CA125 test was only an indicator and that you could get misleading readings and that prefered examination etc, but that he was inviting patients to join this big research project. So I had regular CA125 tests but neither he or I saw the results and, apparently, he we would only have them if there was a reoccurance. By the time i did have a reoccurance in 2010 the research was over and my new oncologist explained that it had found that on its own it wasn't a reliable indicator and that having regular tests when you dont have symptoms could cause unnecessary stress and anxiety.

    I am not sure whether regular tests would have picked up the 2010 reoccurrance more quickly - it was picked up because i had a pain in my side which i thought was a kidney infection. Luckily my GP acted quickly, arranged blood tests immediately and picked up the raised CA125 reading. I do know that the second reoccurance this year was picked because at a routine examination 5 months after finishing treatment - where everything seemed fine - my husband mentioned that i seem to have a permemnant cough. I was immediately sent for a scan and the results came through just as a thought I was beginning to bloat again. So I am not sure that a regular CA125 test would have picked it up more quickly unless i was having monthly tests.

    So I don't know what the answer is. I suspect that everyone needs to do what feels comfortable for them. If regular tests would reassure your Mum then do ask for them - as the others said they should be easy to arrange. If she has confidence in her oncologist ask for fairly frequent checkups/meetings and make sure that she knows that she can contact him/her or her specialist nurse it ask about ANY syptoms that worry her. Personally i think that your body can tell you a lot about what is happening but you do need to go through a period of time getting used to 'listening to it' - which most of us have never done before.

    Sorry - this is longer than intended. I do hope that your Mum does have a good remission and is able to slowly relax into living with oc. She has certainly got a very supportive daughter.

    all the best

    Angela

  • I am in total agreement with Isadora and becky h I also spent 12 months telling an assortment of doctors that I knew something was seriously wrong and being told that "You are working in a stressful profession . You are over 60 .... of course you are fatigued - what do expect ? " Now I am being told "you will know when something is wrong. ") Well in my case since my peritoneal cancer can never go into remission - then I can feel something is wrong all of the time ............ almost immediately after a cycle of chemo has completed I start to have mild symptoms .The question more is how wrong can I let it get before putting out the red flag? My ca 125 had got up as high as 3,600 before I was diagnosed with cancer . It does not take too much imagination to realise that if only my ca 125 had been tested before diagnosis then this disease could have been caught before it got to stage 4 with aceites and my life expectancy would have beebn very very much better

    I have regular and frequent blood tests . My GP tells me that I can have tests whenever I want them I insist on being given a print out of the results. I scrutinise all results carefully for any changes (esp WBCs and neutrophils and blood sugar levels ) . I record all of the CA 125 ............. so I can easily chart it as it rises once treatment has finished and then drops again as treatment starts again. The point that is missed in the discussion about ca 125. It can be unreliable ........ but only if we compare ourselves with other individuals ........... We are all at different stages with different types . It also makes a difference whether we had aceites or not (I did have it in both abdomen and pleural cavity - so my 125 never goes very low (lowest since diagnosis 47 ) but I find it to be a reliable marker for me . It gives me reliable information. I then know when I can hold my nerve . I had let the ca 125 rise up to 2,500 before going back on chemotherapy in August this year . This figure is possible for me but most likely would be quite wrong for someone else. You need to find your personal pattern. The NHS works on a one size fits all basis . I feel it is up to me to personalise and individualise as much as possible . All your blood tests should have been recorded so you should be able to trace past results. . If you are on a trial and you are told that blood tests results will not be shared - then make an appointment with your GP to do extra blood tests and get the results direct from her / him. The time span between scans is too great . ...........therefore we need to make the ca 125 work for us.

  • Thanks for that post Suzy. That is a really interesting take on the CA125. I think that could really help me think about my raised CA125 in a different way.

    Love Lizzie

    X

  • This is a really helpful discussion. I meant to say earlier that while i didn't know my CA125 reading at the end of treatment in 1998 i do know that during the last treatment it did fall steadily but never went below 300. That sounded high to me given the numbers quoted on this site but the oncologist said that the important fact was that it did steadily reduce indicating that the chemo was having an effect.

    All this shared experience is very valuable. I joined the 3 Counties Cancer Network User Group and found that a useful forum for raising concerns about treatment, lack of information etc. As part of that I am on the Cemotherapy Advisory Group and the Research Network Steering Committee. Both of Groups are keen to recruit 'users' and the health professionals do listen to concerns raised. Is anyone else involved in these sort of groups. It wiould seem an excellant way of raising the concerns about policies such as CA125. I certainly intend asking the question at the next User Group and Chemo Group meetings.

    Angela

  • PS. Thanks for the tip about getting information via the GP if you are on a trial Suzy. When i was daignosed and treated 1997/8 i had never heard of oc, didn't take that seriously, and certainly didn't think to question information. Through involvement with ovacome I am now much more clued up and through involvement with consultants and other health professionals through the Cancer Network I am much more confident about which questions I should be asking on my own behalf and for others. I would also now ask to change oncologists if I wasn't confident in the one I had - in 1998 I was very lucky to have an acknowledge expert in the field of OC but I really wouldn't have known then how to judge the competence.

    Angela

  • Yes I totally agree Angela . When first diagnosed I didn't know anything at all about this field. ....... (I still don't but I am gradually becoming an expert on the bits that directly concern me and that I might be able to do something about) but soon it became clear that it was essential to chase up every bit of detail and information since no one else will do it on our behalf. I suppose to begin with we all maybe harbour the delusion that the doctor dealing with us might be a Doctor House. At first there was a bit of resistance when I made it clear that I wanted ALL details and would not be fobbed off . Now they expect to turn the screen round and help me interpret my scans and compare the most recent with previous ones. They expect that I will have got hold of and checked all of the blood test results before they see them. It is a start at least . I still know little about available drugs to treat my cancer . Without this site and also a similar US site (Ovarian Cancer National Alliance ) I would know nothing at all.

  • I agree with Isadora great post (thank you) I had not been given a ca-125 test for two years for the reasons mentioned, or scan since completing chemo, had moniteriing by onc every three months waiting for symptoms, had symptons for over a year mentioned to onc (and I recorded in my diary ) not picked up by onc as not the symptons he was looking for ( ie not looking outside the box,) now I have a para-aortic ovca recurrence that is incurable now I am on chemo again in an attempt to shrink it and delay growth, the only way it was picked up on was that my husband went to the GP for himself , she then asked how I was and he expressed his concerns about me not having a ca-125 done so she then sent him home with a form for me to get it done,

    came back with a risen ca-125 she then rung the onc he said no good to him wait untill I present with symptoms even though I did have them, she sent me for another blood test about five weeks later risen further so e-mailed oncology I had a scan onc said there was probably no need ,Oh yes there was!!! this has been ongoing since april and started treatment the end of August. I don't want to alarm you but take your GP on board I wish I had done this earlier. best wishes Gwyneth.

  • Hi

    I am treated in Greece so the system is different. I had a PET scan to confirm or so I thought the all clear, about 2 months after finishing chemotherapy. It showed cancer activity. At the same time I had a CA test and it was on the rise. PET is not approved in Greece for ovarian ( I had to apply etc).

    I do not think it is necessary. But I think she should insist on a CA 2-3 Months after ending chemotherapy. Even if Ca is rising and even with visible on CT disease they do not start treatment immediately but they monitor more closely as they know one has recurred.

    I have been on more or less continual treatment for 3 years and I am on a chemotherapy break with a kind of if you have no symptoms ..... But still I will do CA and probably CT in just over 1 month since the last. Listen to your body worries me as just like your mum I did not have any symptoms ( I had bloating which is a symptom but I thought it was due to weight increase) and when I felt some pain I had already progressed.

    I wish all the best to your mum and recurrence free future

    GEPI

  • Hello everyone,

    I started this discussion and just wanted to say thank you for all the wonderful replies. Mum had her last chemo on Thursday and we discussed it again with her oncologist. They are still of the opinion that it doesn't benefit the patient to do regular ca125 tests but were completely happy to do them if that is what we wanted. Although they said that they would still only treat when there are symptoms present as well and not just on a raised ca 125. Anyway, me and mum discussed it and my mum has decided that she wants the regular blood tests done, I think for her it's about feeling in control. All your wonderful replies helped us greatly with our decision. Thank you.

    And by the way, some good news, mums ca125 is 17 now! It's been a long six months but I'm so happy that my mum is doing so well. I'm so proud of her.

  • That is brilliant news (about the ca125)! Of course it's about feeling in control. Once you give up control you give up having an influence over outcome. The question of when to treat is a completely different issue, and a discussion that, we hope, your Mother will not need to have.

    Very best wishes,

    Isadora.

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