First check up after all clear - what's the usual procedure?

Hi. I had my first check up after I got the all clear three months ago (2 surgeries, and 6 chemo sessions.) All that happened was a quick vaginal exam' by my surgeon and I've had a CA125 blood test today. Will have the results in a couple of days.

This is France so it may well be standard procedure but I was expecting at least a further scan. What usually happens in the UK when you go for montioring check ups? Would you condiser the bloods to be enough?

12 Replies

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  • Hi Frenchdeb.

    When I have my three month check up....my oncologist feels around my abdomen... that is it really....I sometimes have an internal... no scan....no blood test (ca 125)....my oncologist don't do blood tests anymore, and haven't done for some time (couple of years) he thinks there is no point ....after research was done that showed it was of no benefit...he waits for symptoms.... having said that... I did have symptoms that he ignored for over a year....then my GP sent me for a blood test that showed a risen ca 125 which was a recurrence... I am now in remission after second line chemo...... I personally think it is a good thing to get a blood test done.... but he still doesn't do one.....(nor takes any notice when it is risen)....I go every three months for check ups.... If I am concerned though I would ask my GP for a blood test... I might even do that now and then anyway.

    There are a lot of people on here that get regular blood tests done from their hospital different health care trusts have different opinions...hope this helps.

    Best wishes to you X Gwyneth X

  • Hi Gwen,

    That sounds quite scary, to be honest I would even pay the cost to have my CA 125 done every 12 weeks. A couple of times I have had a little bit of a wobble and phoned my oncologist nurse who straight away told me to see GP for another test.

    I am aware that in some people the protein levels in the blood do not rise but if they reached high levels with the 1st cancer then there is a sure sign they will rise again.

    Deb, This seems to be the normal 12 week check that you have had, I have only had two vaginal exams in my 18 month remission period - here they check for a reocurrance in that department.

    My advice is to nip anything in the bud as soon as you are worried about any changes. I always am able to call my oncologist nurse who advices me the best way forward.

    Hope this helps a little love from Tina xxx

    ,

  • Hi Tina,

    You are right... (excuse the pun :-) lol) it is scary especially when my ca125 is rising...when I first had my blood test done,through my GP after not having had it taken for two years it was risen, my GP said she panicked and rung the oncologist,he said it was no good to him and just ignored it, I carried on having symptoms so my GP sent me for another blood test (about six weeks later) it had risen further she faxed him this time, and then he made an appointment for me, of course I did have a recurrence, I then had palliative chemo which as now put me in remission...... hurrah!!.......I do try to stay alert with any symptoms but it is not easy... as every twinge feels as if it is back...I have come to the conclusion that I have to look out for myself....but I suppose we all have to do that...:-) :-)

    Love and best wishes X G X

  • Hi there

    I am going for my first post treatment check up later today, but they have told me that they don't routinely do either blood tests or scans anymore, but treat if symptoms arise.

    Someone here pointed me to some research by Rustin, which I read on the National Cancer Research website (I think). It said that by treating on symptoms women have chemo later and therefore have fewer cycles over the course of their lives, but it doesn't affect lifespan and means women spend less time dealing with side effects of being treated.

    I know there has been a lot of debate here about the wisdom of this, and people have strong views, particularly because it isn't a consistent approach across the country.

    Hope this helps.

    Warmest wishes

    Sue

    x

  • As someone who had stage 3c grade 3 disease without any symptoms, I get mildly furious when I read of oncologists pontificating that 'they do not do' tests. The decision should be the patient's. If your ca125 is a marker and you wish to monitor your own health, this cheap, quick test is a vital part of doing that.

    For some of us there are huge psychological benefits from the reassurance of a good test, and the resolve to tighten diet and lifestyle choices with a rising one. Patients dealing with any disease do better when they have some control and can take responsibility. If you choose to do whatever your doctor dictates, that is fine. Many of us prefer to feel that we have ways of knowing what is happening to us, and this one of those ways.

    My GP offered me the option to have my ca125 tested as and when I was at all worried, and in the first year after treatment I had it taken about every 6 weeks. It was seen as a good thing to help me monitor which of the many, many pains and sensations that I experienced in the 2 years after surgery and chemo were rehab, and which recurrence. It was also recognised that the person to whom this mattered most was me!

    As a therapist, I need to emphasise the necessity for many (not all; we are all individuals) of us to feel respected by our doctors, and part of the treatment decisions. The way to do this is to become informed, to question decisions, and to assert our needs. I know ca125 can be inaccurate, but it's a marker of inflammatory process, and tells us that something might be going wrong. Without it, I would go mad, and I am not alone, I suspect.

    Isadora.

  • Hi Isadora,

    I know what you mean, when my oncologist informed me that he was no longer doing blood tests, I said "but I thought it was the patients choice" he then replied "oh alright then, you can have it done, but you must realise that I am not going to take any notice of it" and as he also refuses to tell me what it is, what is the point?

    I have now got support off my GP....she is furious with my oncologist...

    I only have to give the word and she would write to him.

    I am now in second time remission, so I suppose I am grateful for this.

    Best Wishes x G x

  • Hi Tina

    I'd be going mad with Isadora if I wasn't getting very regular CA tests, CT scans as and when appropriate, full internal and external examinations to check unexplained aches and pains and also the knowledge that my complete concerns about the disease were being addressed. My Onc said last week that I was in charge of my body and knew it better than him. His role is to give me his best advice on next steps and so far so good. Based on that advice I've decided not to go for 4th line chemo immediately but rather try Tamoxifen orally for a few months to see if that controls it for a while at least. I feel in Control which in turn makes me feel pretty good.

    I'd fight hard for this support if I were not having it.

    Good luck.

    Meryl XXXX

  • Dear Gwen and Sue,

    I agree with Isodora and Meryl - it makes me cross too when I hear of the oncologists who do not follow through with this simple cheap way of testing our protein in blood levels (CA125 blood test).

    Like many the symptoms I had that could have been ovarian cancer related turned out not to be, because I still have them and scan showed the All Clear after operation and treatment + my CA 125 levels dropped from 1,008.00 to .08.

    I have mild niggle pains in my abdoman and pelvic area and dreadful pelvic/groin and hip bone pains. Flare ups of IBS and the list goes on since the cancer - without the reassurance of the CA125 test I would be admitting myself into the first oncologist clinic immediatelly OR pysciatric unit!!!!!

    I was told by someone the blood test only costs the nhs £20 - so ladies those of you who are refussed could have it privately.

    I use to have mine done at every 12 weekly check at the oncologist clinic BUT because it meant either waiting about an hour at the hospital for results OR travelling the 35 mile radius for bloods on a different day to that of the clinic, we asked my GP if she could organise it for me. This way I get the results before my oncologist, when I am told its within normal range I ask for the number and they tell me all this over the telephone. Should it rise but still rmain under the normal range of 35 I may worry but will keep a close eye on it and have another test earlier than the usual 12 weeks. I swear by this test I honestly do, I supose its the same with all medical practioners some believe in things and some don`t, sadly those oncologists who chose to ignore high CA125 levels are playing danger with our life and it is up to us to insist we are tested, is it possible to change oncologists? I`d certainly ask GP to write to him if you not happy with the service.

    I have to say I am more than happy with the medical team looking after me, I have no complaints whatso ever, I find it really hard to understand why some cancer docs treat patients in such an appalling way.

    I had one CT scan after treatment and will only have another if something indicates something is seriously going wrong. MY oncologists told me that Too many scans can actually cause cancer so beware of them too often.

    I seriously am clueless what symptoms to look out for - now ovaries have gone surely the symptoms will differ if cancer re-occurs in/on a different organ or in pelvic space ie: bones, liver, kidney, bowel, abdomen ect.

    At my last oncologist appointment I had a form to complete about whether I would agree with my GP doing my 12 weekly follow up appointments, I said I`d feel safer if I continued to be seen in clinic which is what the oncologist clinic hoped I`d say. With so many cut backs I have a feeling the nhs are maybe trying to cut back on oncologist follow ups. However, in some cases maybe the GP does a better job as has been pointed out here in by Gwen.

    Thank the lord we have each other to chat too.

    Take care girls lots of love from Tina xxx

  • Dear Tina,

    I agree that you are better going to the team that is specialist in OC, I just feel that my GP is there for a blood test if needed, as she did intervene last time, even though I never went to her (my husband went about himself) she enquired about me,he told her his concerns so she sent him home with a form for a blood test (ca125) she is not very well informed about OC but does show genuine concern, and will ring me up to see how I am.

    Best wishes x G x

  • Thanks a lot folks. I've also contacted the French cancer support bods and they feel my exam' was pretty much par for the course (the CA125 still being pretty much routine here.) As I had some lymph nodes removed and analysed as clear in January then I imagine that makes them even more positive.

    My CA125s will probably arrive in tomorrow's post as it's a bank holiday here today (normally it's the next day!) so digits crossed. As a matter of interest, we pay the nurse 5.40 euros and the lab just under 9 so yes, the tests are dirt cheap - and the labs are private.

    I feel a lot more comforted now. I was expecting a scan as I had two during chemo so it was just a bit of a surprise that so little was apparently done, but it seems that even less happens back in the UK.

    Best to all from the Sarthe. xxx

  • Hi Gwen,

    it sounds as though your GP is really smashing - you said `SHE`, I also have a female GP she has hugged me and cried with me and we have laughed out loud together. It goes such a long way to have that, makes it all kind of feel special in many ways. I think this is such a female thing anyway, its so great that we have such tremendous support.

    And Deb I am so pleased to hear that you are feeling more rest assured about everything now. Don`t be suprised if you have a few wobbles along your journey, we are always here for you hun, whenever you feel the need. I think I am less confident as time passes and scared to the fact that time goes so quickly. I can hardly believe it is already 18 months since my surgery and 13 months since treatment ended. Every niggle of nerve pain freaks me out but I think that is to be expected.

    Love and hugs to everyone from Tina XXXX

  • Thanks for that Tina. My neighbour died last month and I certainly do miss having a fellow sufferer to chat with whenever I want - I so miss her.

    Anyway, on a positive note the CA125 was 5.5 so happy days; I'll enjoy the next three months until the next check up and try not to be too cancer minded, as it were!

    Love and all the best to all. xxx

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