Told terminal in 2007 but was I

Hello Lorralea, I feel I know a little about how you are feeling as in 2015 I was told my cancer was incurable, prognosis less than 12 months and I went through the making will and power of attorney phase and morning the loss of me. I was on a drug that on average would only work for 9 months but for me at month 7 a new treatment became available on the NHS and when the drug stopped working I moved onto it and it got me to being No Evidence of Disease (NED) and after a year I was NED and on no treatment, but I had had months hoping for that outcome and had plans to work on my fitness level as I had previously enjoyed sport but had turned into someone who could only walk slowly. You have only had the news recently so it’s bound to be a big emotion for you and you haven’t fully had time to release all the shock that you’ve accumulated over the years.

For me my NED status lasted one year and I’ve been back on treatment ever since but not given up the hope of being NED again as I have enrolled on a new trial which is a possibility for the future when my current drugs stop working (average 14 months). I know your angry at the possibility that you’ve had treatment and all that goes along with it for nothing but what I read is the oncologist has hope that your cancer might never return and that is good news to hang on to. NED and not on treatment should be a glorious time so I see why your husband and many others might not understand but you’ve had a huge shock and need to be kind to yourself.

There is a group on here Life after cancer - Discussion Forum, that I think will be a good fit for you they often quote a paper by Peter Harvey that may help normalise some of your feelings.

Thank you KT for replying, I think I may have given you the idea that after all the Mets treatment which has been over nearly 15 years that I'm now NED, which is a miracle  if I definitely Had lung Mets and a true blessing,  but I don't know if I ever had them in the first place. 

What I'm upset about is my Oncologists casual approach to ... his words.....if you ever had them at all, probably not..then in a letter . Lung Mets possibly. .

..I am just shocked that a Dr can tell someone they are dying  then treat them with powerful drugs only to say years later he doesn't even know if they had lung Mets 

I guess I need to find out and put my mind at rest, I'm confused about my normally practical " it' is what it is brain" being in such turmoil.

One part of me is wow I'm cancer free, the other is . Why have I lived the past 15years believing I'm dying and being put through such awful treatment for what. 

I'm sure I must have had lung Mets after all I had yearly scans etc and even in 2018 I was under another hospital for 18mths and they told me I had new nodules 6mm tiny tiny but they were concerned and would keep a watch, were did that go , noone ever mentioned it again. 

I may be as you say angry when I should.be enjoying my life, I need to sort myself out as it is really getting me down. I have bronchiectasis in my lungs as well so having pain and coughing , breathlessness is part of that illness , but it could also be lung Mets. 

I'm hoping all goes well with your diagnosis, thank you for taking the time out to respond to me , you have helped . I need to get a grip and get an answer. Whatever it is at the moment I am cancer free, something I never thought I would hear, so thank you for reminding me of that miracle.

All the best and may you too be blessed. Xxx

Bloody hell, these people don't learn, do they. My story is in some ways identical to yours. I was at first diagnosed as stage 4 breast cancer with mets to the lungs, asked for and received the estimate of life expectancy, and treated as stage 4 for the next 11 months. I then had lungs surgeries, and what they thought were breast cancer mets weren't that at all. There were 4 beinging findings, one finding of a lymphoma (nothing to do with the breast cancer) and some red faces within the team when they re-staged my breast cancer as stage 2. 

Similar to you, I felt at first like a liar and a cheat and had to keep reminding myself that none of this had been my fault. I actually did query the first diagnosis at the time and was told they were certain, but even if I hadn't, this was completely on them, not me. It took me I think nearly a couple of months to re-work things in my mind and start relaxing about it. I am still in treatment for the breast cancer so there was not a lot of time to focus on the change in diagnosis, but one of the emotions I experienced was being really angry about it and what it caused. 

Not sure I have any wise words of wisdom to offer, but I wanted to tell you that not only I get it about how you are feeling, I actually share some of it at my own end.

Hi Lorralea, what an amazing thing to happen.  It sounds like you could do with some assistance in getting things straight so I might be inclined to contact the PALS dept of whichever hospital this doctor works in and or your oncology specialist nurse. Keep a safe copy of any info you receive too.

You are most definitely not a liar or a cheat but in fact you may have been put through horrible treatments unnecessarily.  Keep angry but use the anger to find out info. Any meetings with that doctor should be avoided for the present.  I see from KTatHome's message there's another forum on here that could be worth joining. Fingers crossed you get some answers soon xx