Gone the rounds with the oncologist on follow up scans?

I've just got back from my first three month appointment since the last chemo. Good news is that the CT scan last month showed no disease, and CA125 is at 12, which is not an increase... However, I'm in tears as not only was I waiting an hour and a half past my appointment time which made me quite anxious and sick, but when I asked for a CT and CA125 in 3 months time.. I had a REAL fight on my hands! I was prepared to have to be persuasive given I had a discussion last time (and have previously responded to other ladies who have also had this 'battle' advising them to stick to their guns) but honestly!!! Can't the oncologist see that just waiting to see how I feel is NOT what I can do? I had symptoms which I totally rationalised away leading up to the cancer diagnosis so I CANNOT trust my body to 'tell' me if it's back, and if it was a matter of waiting till I felt ill, why would they still need to see me in 3 months time? Surely I should just go away and go back if/when I felt ill (or dropped dead?). I have lost all my female organs, my chance of motherhood, missed out on months of parties and celebrations and work as I've been sick from the chemo: and to go from knowing what's going on in my body on a regular basis to nothing is too much for me to handle emotionally. Anyway: eventually the onc agreed and I have a CT and bloods next time. I'm knackered now: I can't go through this every time I have a checkup though!!! Anyone with similar experiences??

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  • I think the usual process when placed on 3 monthly check ups is to do the CA12 test at the check up and only if it starts to increase by a reasonable margin a CT scan is requested or likewise if you show symptoms. I think they try and minimise the number of scans you receive per annum due to radiation fears. Although they have agreed to scan you again in 3 mths, I dont think they would do it every time. Love Paul xx

  • Hi there .. exactly the same .. when I have my consultation, there's no scan report .. just a chat .. so it's hard not knowing. I didn't have a raised CA125 at diagnosis so I'm not monitored that way and CT shows hardly anything. I think my surgeons were surprised when I had a laparotomy 4 weeks go and the disease was back across the abdomen. I can totally understand how you feel though because I can't be monitored except by how I feel so maybe my case is different. I think you're right that it's hard not to know especially feeling we may have not noticed all signs of change running up to diagnosis and in a lot of cases here, neither did our doctors. I find check-up time stressful and upsetting too which is linked to the uncertainty of it all. Sending you all good thoughts. Love Tina x x

  • Hi

    Paul is right about the scans they are very careful that you do not have too many .I know what you mean about if you carnt feel anything it doesnt mean to say there is nothing happening.

    I have moved and toyed with the idea of moving health authorities due to mileage. I was admitted and was questioned as to why I was on chemo as my ca125 was only 900. There answer was we would only give you chemo if you were

    having problems. THAT was it like you said I thought I am not coming here I could be dead!! As you say we can look good from the outside but it is the unknown inside

    There one thing about this disease and treatment there seem to be so many differences in procedures

    A good result from your ca125. and a good scan result long my it continue.

    Regards Barbara.

  • Agree with what has already been said about the radiation risk with scans. Hope you won't have to battle to get a CA 125 though. I think that at my hospital you would have to opt out if you didn't want it.

    Waiting in clinic does increase the anxiety levels. It does help if the reasons for the delay are explained. At my last clinic, one of the nurses made a general apology to all the waiting patients and explained that we were running late because one of the consultants had been called away to an emergency and some of the consultations were taking longer than expected. She told us we would probably be running about two hours late and everyone accepted this with good humour because they knew the circumstances. Luckily a registrar was drafted in and we speeded up.

    Glad that your scan and CA 125 came back with good results. I do hope you feel better soon.

    Love Mary xx

  • I'm sorry you feel as you do because you actually have cause for celebration. Ironically, I argued in the other direction with my oncologist, who wanted scans during the first year, but I was anxious about the effect of the scans on my immune system, which I was doing all I could to support and enhance.

    Ultimately, I had one for diagnosis before surgery, one after surgery, and one after chemo. On his insistence, I also had one at 12 months, but I wasn't happy about it, and have not had any since.

    If ca 125 was a good marker of your disease, and a physical exam is not finding anything, I would trust that. The issue of whether you had symptoms was the same for me - none at all except for a small groinal lymph node enlarged - I was stage 3c, and had aggressive cancer.

    I hope you continue to get better and better!

    Isadora.

  • I went for my last scan in May this year and my oncologist told me she does not need to see me until May 2014, she had not booked any CT scans for me. I did get my bloods checked in July as I felt my tummy swelling it was fine I am just getting fat. It seems they just say come back if you feel the symptoms returning. I thing every hospital is different it would be interesting to find out who goes to which hospital. I am under Maidstone Hospital.

    Love to all Babs x x

  • I agree with what the others have said about not having too many scans. I was told that one CT uses as much radiation as 20 conventional X-rays.

    It can be stressful waiting in clinic but usually there's a good reason for it. Sometimes it can be because patients have needed more time than that notionally allocated for each appointment. I work on the principle that my consultants give me the time that I need, on occasions more than the allocated time, so when my appointment is behind schedule maybe it's because others needed more time.

    I do hope that you soon feel better about today as what you've heard is good news.

    Love

    Zannah x

  • Hi ,

    I was told that I didn't need a scan after treatment and that I won't have any unless ca125 rises. The ca 125 is a good indicator for me . I'm seen 3 monthly and I have a pelvic exam . It sounds like it was great news and I concur with you that the whole process of the appointment etc is totally exhausting. I'm due back in 2 weeks and I'm already anxious ! I bet you are really drained . Like you I had no real symptoms and agree its now really hard to trust that we will know ! Glad you fought to get what you need ! Love dy xx

  • Hi I also had a 3 month check up just yesterday - no scan or Ca125 test (although ive always been told the CA level is not a good indicator for me as it was never high) . So ended up just having a chat about how I felt generally which was fine but odd at the same time so I know exactly what you mean. Having a chat just seems so non specific . but back in 3 months for a scan and decided yesterday was a positive experience even if it was a bit weird as to me just 'feeling well' might not mean the cancer had totally gone way but I decided not go worry about it anymore. Good luck with your check ups and future scans !

  • Agree with everything that has been said, I recently attended a 3 month check up - not by an oncologist but at the joint gynae clinic, my oncologist is on maternity leave, internal examination, a brief chat, she couldn't answer any questions because she didn't have my notes - very frustrating.

    I have since spoken to my specialist nurse (who is brilliant), the Dr I saw had spoken to her after my visit and she assured me that if I have symptoms just get in touch, they are there for me. As many of you have said, we missed the symptoms in the first place, how sure can we be of ourselves now. Post chemo, in my case for the third time, we are certainly not back to normal - again this can lead to confusing, misleading feelings and symptoms. CA125 is not a good marker for me and they do not carry out this test as a matter of course - only when we present with symptoms.

    It is a difficult time post treatment, as has been said, for months we are so closely monitored, we know exactly what is happening, then we are left to our own devices, dropped off a cliff. I remember well how I felt and family didn't understand, they thought I should feel ecstatic after getting the all clear back then, just as well we didn't know how the next two years would pan out with two recurrances. Post treatment is the time when many people turn to cancer support groups to fill the void, hopefully there is one near you Laurie.

    Joanna

    xxx

  • Dear Laurie

    I'm really sorry you're feeling so worried. I think it's a shame your hospital didn't suggest some additional time with a small group to talk about how you feel. At my former hospital in Cardiff the CNS nurse ran groups for patients who felt ill-at-ease and they could also be referred for further help. I think this is just as important as treating the cancer.

    I think a lot of us feel strangely led-down at the end of treatment and it would be easy to feel frightened and abandoned. I agree with many posts that a scan each 3 months isn't advisable.

    I don't know if this will help - but I was totally asymptomatic on diagnosis. That was some time ago and since that time I had surgery and chemotherapy which left me free of any visible disease. I had 3 month check-ups and CA125 tests which were reassuring. Once the CA125 was showing signs of going up the oncologist ordered a scan even though I had no symptoms. She then organised another scan 6 months later and there was some small developments but she said not to worry at that time.

    After the scans showed some small signs of recurrence my oncologist was very thorough, knocked my back to make sure it sounded hollow, and felt my abdomen in case there was some build-up of ascites. I have had a very long period of remission and it's only recently I've had some slight 'feelings' in my abdomen which have heralded the need for further treatment.

    I thnk it is possible to take a relaxed view of follow-up checks but first of all your oncology team has to make more effort to ensure you have confidence in them otherwise you will have a miserable time to come. I wonder if you can explain how you feel and ask if there are any groups you can join, complimentary therapies, or talking therapies to put your mind at rest.

    I really hope you get this sorted out and feel more reassured.

    Please keep posting and let us know how you're feeling.

    with love xxx Annie

  • Hi Laurie - I've just had my 2nd 3 monthly check up, well sort of! It was due on 11th Nov but I had been having pain in my pelvic area and discussed it with my specialist nurse who took the decision to bring my appt forward and I went last week. My Onc examined me both internally and externally and didn't think there was a problem but ordered a ct scan to be sure. I managed to get this done whilst I was there. She doesn't believe having regular CA125 tests is a good thing as they aren't reliable. I've had the results from my scan and everything ok thank goodness. At my 1st check-up I was also told that I would not get a CA125 as a matter of course and I had actually had one done at my GP's which had gone down from 10 to 5. After discussion he agreed that I could have the test prior to check up if I wanted so it was my decision. However, I am coming round to thinking that perhaps I shouldn't be relying on the CA125. I'm down to 5 and if it started to rise at all I would get anxious that the cancer was flaring up again when it could be something else causing it to rise. I suspect my Husband would disagree with my thinking but I don't have to worry about that again until my next appt in January! Sorry to rabbit on but what I am saying is I thought the same as you initially but at the end of the day it should be what you feel is right and what makes you able to cope better and be stress free. It's your body after all.

    Good luck with everything

    Annette xxx

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