Check ups after chemo finishes, 3 monthly or 6 monthly?

Hi I was diagnosed in July, stage 1c2, had full hysterectomy. Saw my surgeon 6 weeks after the op just before I started chemo. We talked about after care and he said that I would be seen 3 monthly, one time him next time with the oncologist. Said no scans or blood test, just would be relying on me to report any symptoms, my CA125 was normal in the first place. Then last week I saw the oncologist after my 4th chemo, he said that after the next two he would arrange a ct as a baseline scan then my next appointment would be in 6 months, just to see how I am. I told him I was told by the surgeon that my follow ups would be 3 monthly, he said no, the protocol in Kent was 6 monthly checks believing that 3 monthly makes the patient more anxious! So are you checked 3 or 6 monthly? Thank you. xx

18 Replies

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  • I was three months now increased to four months with no scans, however if I am not happy at any time I can ring the gynae liason nurse and she will look after me. This is here in Ireland

  • I went every 3 months for 9 months, then I will start every 4 months for a while and then go to 6 months. CA125 done before each visit. No scans unless symptoms appear. You are at a pretty low stage so they probably are OK stretching things out. I am in US by the way.

  • I see my ongologist ever 6 weeks. I go to st james Leeds

  • Hi, I'm in Devon and have 1c. I finished chemo in May, saw my surgeon in July and will be seeing my oncologist next month (last CT was April) xx

  • 3a, in London, check ups every 3 months for the last 2 and a half years, but was on a trial. No scans, just bloods, but can always make an appointment if I'm worried. Everything seems to be different for everyone!! x

  • 1C3 clear cell - initially told no end of treatment scan or regular CA125 blood tests however I (firmly and politely) asked for both. Had end of treatment scan on 26th Aug and I've had three CA tests since then as mine is going up. It was only 30 at diagnosis, dropped to a low of 13 before chemo session 5 then to 14, 21 at end of Nov and 39 at beginning of Dec.

    I'm seen every three months however due to rising CA (which I think is linked to something going on in my intestines - see my earlier posts if interested) I'm due to be seen after two months. I won't allow any increase in my Onc visits until I've passed the one year mark.

    I've had an ultrasound (Oct) and a contrast dye CT in early Dec - no signs of anything which is good.

    If you are not happy with the frequency of your initial reviews then please take a deep breath and tell them. They tend to forget that we are people who know ourselves and what will make US confident and secure with our fears of recurrence etc.

    Take care

    Clare xx

  • Hi Triplets

    Read thread

    healthunlocked.com/ovacome/...

    also about monitoring of different types. Mine 1C1 by local oncologist suggested watch and wait but oncologist at Royal Marsden recommended bloods every 3 months and scan every 6 for first 2 years then reducing.

    As the other thread said all different.

    Fay

  • Hi, 3 monthly, no scans or blood tests. X

  • Is it possible the oncologist meant that he would be reviewing you every six months, as that's what would happen with alternate three monthly reviews with the surgeon / oncologist? That's what I was told too, every three months alternating between the surgeon and the oncologist. In the event, I had recurred at the first review so that no longer applies. Since I had no symptoms, I wouldn't have known I'd recurred without that first review and the CA125 test.

  • Hi Triplets

    Hope you are doing OK. I was staged as 1C2 mucinous in August 2013 following surgery - TAH BSO etc etc - within the Irish system. I had six months or twelve sessions of Folfox and was seen by the oncologist once during treatment (after six sessions) and then every six months since after treatment. When I finished treatment, I felt very at sea initially and found it a long wait. However, I got used to it. I have had CT scans each time - all clear to date - and CA125 tests - 15 for the last three, down from 18. I have to say that I am in mostly good form on an ongoing basis and then for three weeks to a month before my scans/visits I become really anxious. He has suggested that after my next two six monthly appointments we will move to yearly. I think though that if I was staged higher I would prefer to be seen more often. For me, the CT scan is the most important thing. It seems that for mucinous OvCa the CA125 test is not regarded to be as relevant.

    x Marguerite

  • Hi Marguerite

    For mucinous the tests tend to be a CEA (raised in 88% of mucinous cases) and CA19-9 as you say the CA125 not much use in mucinous. If you want blood tests these are the tumour marker ones for mucinous.

    I wanted the Folfox type regime but was refused in England as I think better for Mucinous.

    Highly irritating how different areas and oncologists are.

    Fay

  • Hi Fay

    Thanks for your reply and earlier posts with information about various tests. Yes, I had been intending to raise the issue of CEA and CA19-9 tests with my oncologist the next time I see him and you have convinced me now! My CA125 was through the roof (in the 1,000s) when I was diagnosed but I did have a fibroid and other stuff going on in the uterus also. After surgery and during treatment the CA125 result was in the 20s, then dropped to 18 and has remained at 15. I am three years and four months post surgery and two years and nine months from the end of treatment.

    I think I was lucky to have been treated with Folfox but luck should have nothing to do with it. The evidence base, however small, seems to be pointing in its favour. As you say, it is really irritating and perplexing how there can be such a variation in responses.

    Hope you are doing Ok with your treatment.

    x Marguerite

  • I had three monthly for two years, then four monthly, when I went to six monthly after three years the alien returned, typical! So went to six weekly after surgery and chemo, then three monthly. I'm also stage 1C. I do have bloods even though my initial diagnosis it was 34, when it returned it was 47, so an indicator of recurrence for me.

    LA xx

  • 3 monthly with CA125 and full blood count. Not sure what the likelihood of a CT scan is as I will only be having my first review in January!

  • Hi, I live in Wales,& I had a hysterectomy Nov.2015.followed by chemo & brachytherapy. I have been seen three monthly with the Oncologist, & each time with an internal examination,& a chat about how I am. My last three monthly app. will be March 2017,then it will be onto six monthly. The scan business is the same here No scans just watch & wait. I think sometimes excuses are made so that costs in the Trust can be made,but very cleverley tell patients,the various things are actually for our benefit.

    I have found it worrying,because I think that you just do not know what is going on inside. I was told however that should I have pain or any other strange symptoms for 2-3 weeks then to contact the Macmillan nurse & I would be fast tracked.

    Happy New Year to you.xxx

  • Hi there

    The variation in approaches by oncologists is mystifying to say the least when they come to check ups. I had CT scan after first treatment and CA 125 . Scan was clear and CA125 was down from 8000 to normal . Initial diagnosis was 2011 with stage 3c high grade serous PPC. Only treatment was Carbo/taxol. Next scan was one year later but no Ca125 for nearly 4 years on the grounds they would make me anxious ! No more scans until 2014. My GP did my ca125 last year and then I was discharged from Oncology in Aug and told I would only be seen every 6months by the gynaecologist. That astounded me as I could not understand how I could be discharged by Oncology with a stage 3 recurring Cancer. By end of Feb I made a private appt with the gynae who sent me for a scan that showed swollen peri aortic lymph nodes that resulted in chemo starting Aug this year and ended just recently .

    As I am reading the various replies I am astounded at the variation. Are they all just taking a stab in the dark ? Is it finance ? My public hospital use my private health insurance as it suits them. The longer I survive I'm afraid the more cynical I have become . I hope I haven't confused anyone !

    XXX

  • Interesting variations aren't there? Guess at the end of the day we each have to ask and push for what WE want, my husband was diagnosed with stage 4 bowel cancer in 2008 and if it wasn't for me researching and fighting to get him on a trial he wouldn't still be here, in his 6th year of remission! Guess we have to listen to our own bodies and holler if we feel something isn't right! Thank you all for your replies. x

  • I'm here in the US and I go to Memorial Sloan Kettering, one of the cutting edge cancer centers here. The policy after surgery and chemo is bloodwork and scans every three months for two years, then every six, then once a year. Just yesterday I had my follow up appointment after CT and MRIs. The oncologist changed me from three to six months intervals, a very good sign.

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