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? 

  • Hello Myboobs, 

    It is not uncommon to feel this way after cancer treatment, to feel like it's a struggle to move forward. Many members of our community have previously shared  before the constant worry that the cancer might come back, the never ending anxiety at every twinge. You can read more about this on our page on mental health during and after cancer treatment and there is a sub section there on how people may feel after treatment has finished. It does mention that some people start struggling with their mental health after treatment finishes. For many people, anxiety will gradually decrease over time but if you struggle with worries about your cancer coming back, it is a good idea to speak to your specialist nurse or cancer team.

    Don't hesitate to also contact the Cancer Research UK nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday - they will be happy to listen to your fear and worries and to reassure you as much as they can. 

    It is important also that you don't put pressure on yourself - what you are feeling is quite common and something that many of our members will be able to relate to. You will be able to move forward and it may not be immediate but with the right support it will get easier gradually. Do talk to your GP too and ask for help and suggestions and if they have anything they could offer other than counselling which could be of help. 

    As nothing replaces hearing from personal stories experiences, I will now let our members who have been in a similar position, wanting to move forward but not seeing a way to do so, come and share their top tips with you based on what worked for them and their own past experiences. I hope that you will feel better soon and start enjoying living again - give yourself the time you need though to process everything you've been through in recent years so that you can move forward and look forward to your new cancer free life. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Live each day as it comes. Do the things in life you've always put off

  • Hello My boobs

    I am in a similar situation to yours, on exemestane for the next 5-10 years and feeling ***.  Have been referred to mental health clinic for a review of my meds as am already at top dose of sertraline, there has to be something I can take to stabilize my mood, I miss my hrt lol.  Counseling only goes so far but I have got referrals to MH clinic, physio and tier 3 weight management so am waiting to hear from them.  Pain management is a nuisance but necessary, I have to accept that paracetamol and ibuprofen are part of my daily life now, I have joined a local spa and try to swim 3 or 4 times a week and do Pilates class once a week.  It is difficult to keep motivated but the movement does help, particularly in the water.  I started getting my nails done with biab stuff as they were so *** after chemo, never had them done by a professional before but now go every 3 weeks.  I might feel *** but my nails look pretty and I can see them and it gives me a lift.  My hair is still very short and thin and I hate mirrors but try to give myself a scalp massage with rosemary oil at least once a week.  Light smelly candles, go to a sound bath, anything that gives you joy.  Accepting that I won't go back to my old "normal" whilst on these awful meds is very much a work in progress but I am fighting to get there.  I too, am fed up of feeling sick and tired, fed up of fighting, exhausted by the act of staying alive, I try to remember that a chemical imbalance is the enemy here, this too shall pass.  You are not alone babe, you are not going nuts, this is the unseen, hidden part of your recovery xx

    Hugs  

  • The "afterwards" is weird. I had major surgery last November to remove an huge sarcoma, which necessitated removing my left kidney, spleen, left part of the bowel and part of the pancreas. I am making a good recovery and am having regular CT scans. I think it is only the last few months that I have had real realisation of what actually happened, I felt fine before the operation, only had, what felt to me, a slight swelling. I still get tired, the mornings are best. I have posted about my journey here which helped a lot.

    But, yes, what now? What did I do before? If anyone asked me that, I'm not sure!

  • Offline in reply to Mary.

    Hi there 

    I had relatively quick treatment for DCIS. So following on from that, I’m trying to find out what the new normal is. I have found out it’s anything but straightforward! Trying some complementary therapies is helpful and I’ve booked to go on a couple of Moving Forward workshops. 
    I’m hoping for the best … maybe hope is the thing to aim for …

    My best wishes to you all

    X

  • 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

  • Offline in reply to davek

    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

  • Offline in reply to Jstaves

    Yes, the new normal, not what we used to do. And hope.

    Strength for today, bright hope for tomorrow.

  • Offline in reply to Mary.

    Thank you Mary 

    That’s a great way to go

    X

  • Offline in reply to davek

    You would have no idea just how much I enjoyed reading your post.

    I have been told I am a miracle. You must be too :-)