Treatment finished, clear of disease, what next?

Hello all 

I was diagnosed with Stage 2 Grade 2 DCIS in Dec 2022. All of 2023 and beginning of 2024 was spent in treatment. I’m on hormone therapy for the next 5 years.  I’ve been told I am free of disease, but I’m really struggling to move forward. 

Every twinge, itch, rash etc, I immediately start thinking the worst. I keep thinking “what if” it’s coming back? I’m sick and tired of being sick and tired. I’m fed up of the constant worry, the thought that it will be back and everything I’ve been through is pointless - I’m going to die from it anyway.  It’s exhausting. 

I’ve had lots of counselling already, also tired of this. I want to move forward, but I can’t see a way how. Has anyone else felt like this, and how did you start “living” again please? 

Parents
  • That’s a really hard question to answer. 
    I was given a very bleak prognosis at stage 4 and put onto palliative care. I “settled my affairs” and even put together a play list for my wake. Then, a bit like Wilko Johnson, my oncologist was surprised that, despite all treatment ending a year earlier, my cancers were still shrinking 6 months after my expiry date and again at 12 and 18 months. Seven years later my CT scan showed no visible sign of cancer.
    That really messes with your mind. 

    Keeping busy helps - I’m not a religious person but some people find comfort there. Long walks with my dog helped a lot, as did starting s new career to supplement my early retirement pension and to keep my mind distracted. Chatting with peers on here really helped too, as did anti-depressants for a couple of years. 

    It feels very much like the grieving process. Shock, denial, anger, bargaining, depression and acceptance. I’m finally at a stage where I’m glad to be alive and well, but accepting of the belief that sooner or later my cancer will return. 

    I do hope you find your way through this.

    Good luck
    Dave

  • Hi davek

    You’ve been through so much …. It’s good to know that you’ve got to a stage where you’re feeling alive and well. Acceptance of what is to come is a huge step. You’re amazing…. at the moment I’ve started letting go of all those big emotions, that I held onto, as I went through treatment. It does feel like a grieving process. I’m finding a good cry really therapeutic.
    I’m hoping to find a way through.

    Thank you for your message….it means a lot…

    Take care

    X

Reply
  • Hi davek

    You’ve been through so much …. It’s good to know that you’ve got to a stage where you’re feeling alive and well. Acceptance of what is to come is a huge step. You’re amazing…. at the moment I’ve started letting go of all those big emotions, that I held onto, as I went through treatment. It does feel like a grieving process. I’m finding a good cry really therapeutic.
    I’m hoping to find a way through.

    Thank you for your message….it means a lot…

    Take care

    X

Children
  • I don’t feel amazing, just so incredibly lucky. 
    The only unusual thing I did was set myself the target of being fit enough to sail competitively  by Easter after finishing chemo in early January. That physical recovery started with three weeks alone on a beach in South Goa complete with neuropathy, chemo brain fog and exhaustion. 
    I felt I needed time alone and away from acting the patient role, meeting only people who didn’t know me from Adam, seeing the worry on the faces of family and friends and talking day in and day out about cancer! 
    I slept a lot, swam in the sea a lot, ate far too much as my appetite returned and by the end of my break I was walking several miles a day. The travel insurance was expensive but, at the time, I thought that I had less than a year to live.
    My wife couldn’t believe the difference when I arrived home - though the suntan and putting half a stone back on helped.
    My end of chemo CT scan results were received a couple of days after my return home and showed the chemo hadn’t just stopped my cancer from growing, but that the primary had shrunk by 50% and the mets by 60%. 
    That felt like a miracle. 
    Sorry for rambling on.

  • Hi Davek

    I completely understand why you needed to be alone in Goa. Swimming, resting in the sun, sleeping and enjoying plenty of food, sounds as if, it was the perfect place to be.

    For your wife to have seen such a difference in you, is wonderful. 

    Then the results of your scan …. that is miraculous!

    I’ve loved listening to you ….

    It’s heart warming…

    Fingers crossed for a great day ahead ….

    My best wishes 

    X