Home Now what? The highs and lows of survivorship

Re tests

GalGal Member Posts: 27
Just wondering if anyone has had any tests after chemo and radiation has finished. I am TNBC, my oncologist said that there is only mammogram/ultra sound follow up. I am 64yrs old she said no to removing ovaries as it's not oestrogen feed cancer. I had bone and ct scan before lumpectomy September 2018 nothing since. I am grateful for any feed back.Xxx


  • AfraserAfraser MelbourneMember Posts: 3,422
    I've had mammogram and ultrasound annually for 5 years, now only mammograms as my remaining breast is apparently bordering on translucent and 3D mammograms are quite sufficient! I do have bone density scans as I am on letrozole and therefore at risk. I have also had a cervical ultrasound . I am technically over the age for a Pap smear but want it checked, and atrophy (thanks letrozole) makes a smear inconclusive. I am hoping oestrogen cream (in tiny amounts) will rectify the atrophy and risk of prolapse. That said, I feel very well and am living normally. Best wishes. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,871
    I am oestrogen positive and still have ovaries although they're supposedly no longer active.  The only screening test that I have now is 12 monthly 3D mammograms unless something else is deemed warranted.
  • kmakmkmakm MelbourneMember Posts: 7,962
    Sadly for our states of mind there is no test as such. Just regular check ups as your doctors advice. I have no boobs so there's only physical examination. They only investigate if there is something suspicious.  :/

    We do what we can and move on as best as we can. K xox
  • youngdogmumyoungdogmum Gold Coast Member Posts: 249
    I asked my oncologist last chemo why this is, when in the US they seem to routinely scan a lot more women systemically... I asked specially if it’s a public health cost given we are a universal scheme. He said no and he said if he was to scan me 6 monthly for the next 10-20 years I’d surely end up with another form of cancer from that amount of radiation exposure. Which makes sense. It’s very daunting and I know for a while I will think every ache and pain is cancer.  I hope I can just live my life to its fullest until otherwise... BC recurrence or not :) 
  • AllyJayAllyJay Member Posts: 750
    I was told that the amount of radiation in one CT scan, is about the same as around two hundred chest X rays.
  • youngdogmumyoungdogmum Gold Coast Member Posts: 249
    @AllyJay yes it’s certainly a significant amount.. I looked after a teenage cancer patient last year and we had a sign on her door that said “no imaging whatsoever without consultant discussion” .. this was because she had been exposed to so much radiation over her many years of cancer it was feared junior doctors ordering X-rays would push her over the edge and cause further disease. 
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 110
    Yes @gal it's really hard to believe but after the "active" treatment is finished they send you out the door clutching your packet of pills (if you are ER+) and you will see your surgeon once a year after a mammogram if you have aa breast left and oncology registrar for five minutes once a year and there you go! If you have anything wrong with you see your GP and hope they can help but they actually can't most of the time because you will be suffering from the treatment not the disease - until it comes back of course. You can't find that out until it's already well-established and causing symptoms. You really have to take care of yourself, read up and be well-informed, and start to live the bravest of lives like all the women on this site who are absolute heroes. Stay strong when you can and give in when you can't, have a pyjama day, cry, indulge in some restorative self-pity then get up and go back with your smile pasted on and remember that NOBODY gets it who hasn't been there. Warmest thoughts.
  • AfraserAfraser MelbourneMember Posts: 3,422
    I agree it's largely up to you to monitor your health and wellbeing, but my oncologist and surgeon have always been available to see me if required in between time. Hasn't happened much but I'm seeing my surgeon again in June to remove another non-malignant excrescence! He'd prefer to do it and so would I. Yes there is a small cost. 
  • Harvey1903Harvey1903 Regional VictoriaMember Posts: 190
    @Annski - thank you for those words - just what was needed.  I have printed out and will re-read when things are too much.  J
  • SilbaSilba SydneyMember Posts: 113
    I have mets in my hip , so after chemo , surgery and radio to  chest , lymph nodes and hip , I had a CT and Bone Scan , after radio and Onc has inform me I will be getting scanned every 3 months , since the hip is still glowing even after radio.
      I  have been sent with my packet of pills and monthly Xgeva injection.

    So I think it depends on what you actually have been diagnosed with and treated for, but yes I will say that you can of feel adrift and you just have to put your life together again.

    I'm only 50 , so for me is trying to get back to work.

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