Hello. I was diagnosed with stage 4 dlbcl triple hit in October 2018. (uterus, bladder, liver, kidneys, adrenal glands, lungs, neck) The very short version is this: After a year of battling, and 2 relapses ((which included further tumours in my head, face, scalp, shoulder, and groin) it was finally decided that chemo wasn’t the answer and I had car-t in Nov 2019. This put me into my third remission, Then in September 2020 it was back in 3 more areas. (They didn’t biopsy it this time so I don’t even know if it was the same cancer) I was told that I had ‘less than a year’ left to live and was put into the palliative system. As I wanted to enjoy a last Christmas my consultant agreed I could have some radiotherapy in the three areas (foot, shin and groin). I had this in October 2020 and it put me back in remission.
As far as I am aware I am still in remission, 3 years later.
This probably sounds like a really strange question but it is about language. As the cancer was initially stage 4, and refractory, do I consider myself to be ‘living with cancer’ or do I consider myself ‘cured’ ?
Hi again Lellynelly ……. living with cancer is my approach.
You may remember that I was diagnosed way back in 1999 with a different (rare) incurable type of NHL…… and I am just over 8 years out from my second Allo SCT. If SCT had not worked I would have went into palliative care.
I also was stage 4….. and up until Oct 2015 the longest partial remission I had was about 9 months before I went on to more treatment…… eventually on the 19 September 2016 I was told I was in full remission and NED (No Evident Disease)…… am I cured now that I am 7 years on……. my clinical team will not say this as they basically have no way of confirming this…….. but I live as though I am not going to relapse….. it’s the mindset I have selected and I get on living life to the full.
According to travel insurance industry….. as I am 5 years without treatment they class me as cured!!!
What ever you chose between living with cancer or cured get on and live your life and don’t be looking over your shoulder all the time ((hugs))
Yes you have had some challenges….. I won’t put my story on here but you can see it through the link at the bottom of my posts.
On 18 June 2018 my clinical team discharged me and apart from yearly full bloods and a call from a late effects SCN ……. I get on with life
I have had post SCT issues but I am doing exactly what my consultant said….. “….go live your life and let’s hope that you don’t needs us again but you have our number”
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones…… I often go back to it when I have a dip.
4 years 
Once you reach 5 years and look for Travel Insurance and as long as you are not on any Lymphoma treatments the Insurance says you are cured!!!!!!…… but my type of Low Grade NHL is incurable….
It’s a funny old world ((hugs))
