Home Now what? The highs and lows of survivorship


Barks34Barks34 Member Posts: 39
I was diagnosed in March 2018, mastectomy April 2018, chemo May- Oct 2018, now on Toremifene, had a second mastectomy Oct 2019, my choice, when I had reconstruction, waiting for another reconstruction. I dont have any checks or tests planned as I have finished treatment and when I queried I was told as per national guidelines there is no need. So do I just take the toremifene until the 5 years is up, is that from when I started on it or when I was diagnosed?  Last appointment I had with oncologist was April 2019 and was told i was going longer than usual but I had extremely bad neuropathy pain and a reaction to tamoxifen. How do you cope knowing the cancer may be back but dont know? My breast care nurse is FABULOUS as is my surgeon, just confused and concerned. I dont have a GP as where I live only has locum doctors so its a different doctor every time I go. 


  • AfraserAfraser MelbourneMember Posts: 3,889
    Every oncologist had their own processes, but after a mastectomy seven years ago I had regular checks, three monthly to start, with both my oncologist and surgeon. I still see both once a year, alternating, so I see one of them every six months and have a 3D mammogram with my surgeon at each of his checks, which of course is not required in your case. I didn’t find a lump, so not all that convinced I would know if something was amiss, at an early stage. It may of course depend on your diagnosis but a year certainly doesn’t sound ‘longer than usual’ to me. Can’t see why you can’t ask for a check. 
  • kezmusckezmusc Member Posts: 1,544
    Hi @Barks34

    Its not really fair is it? Living in limbo. .  Talk to you BCN and tell her how much it's causing concern and affecting your recovery.  She may be able to get a referal for an MRI or CT from your surgeon. There should be no reason for them to say no.   Sometimes you just have to jump up and down enough to get what you want.
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 283
    edited April 2020
    Hi @Barks34
    I agree with kesmusc, speak to your breast care nurse.
    Remember the old saying they will fix a squeaky wheel, make a noise until they do something.
    Please don’t just sit back and fill yourself with  anxiety.

    I haven’t seen my oncologist since I finished chemotherapy back in July last year. But I’m not taking any hormonal medication either.

    I visit my surgeon currently every 6 months,  after my first yearly mammogram after treatment finished in October 2019 with the all clear.

    I would follow it up and put your mind at rest.
    Sending a big virtual hug xx

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