Sorry... What is "incurable manageable" or whatever?

hi and welcome to our community.

The vast majority of us are just like you patients, family, friends so just experienced with cancer but not experts.

In the case of my wife she has incurable cancer - in that there is at least currently- no way of getting rid of the cancer but it is stable - no evidence of progression for the last 6 years. We now consider ourselves to be "living with cancer" rather than seeing it as a death sentence. I would guess this is something similar to what they mean by incurable/manageable, more on this here.

Survival stats of all cancers are based on people who have survived - and so are automatically years behind current medical advances. It is also worth noting that they usually stop at the 5 year boundary because it becomes next to impossible to distinguish if someone died as a result of their cancer or due to something else.  The statistic is that statistic but as you have said yourself everyone is different - we all take the role of the dice as it comes.

When my wife was diagnosed they told us her type of cancer was not often responsive to chemotherapy - fortunately the cancer did not appear to listen. My wife never wanted to be told "how long" and nobody would have guessed 6 years and still going strong. Her oncologist is even suggesting discharging her back to GP care because she is doing so well.

As you asked "not to beat about the bush" the truth is nobody knows what tomorrow will bring. I had to do a living with less stress course to learn this and now we focus on enjoying today but have a bit of a back up plan for when things do not work out quite so well.

<<hugs>>

Steve

Hi , I just wanted to add to my friend Steve's src60 great reply.

I was diagnosed with a very rare incurable but treatable/manageable type of Non Hodgkin's Lymphoma way back in 1999. I have had many treatments over my years, some of these treatments were not around in the early years. For the first 17 years the longest I could go without treatment was about 9 months so I only was getting 9 months treatment free time off. 

Then in late 2013 my condition kicked off big style....... requiring some serious treatments but eventually in Sep 2016 I was told I was in remission and have had no further treatment since...... I am not cancer free, my condition remains incurable but the treatments I have had are 'managing it'

My hope is that I will out live my cancer but over the 6+ years since my last treatment (that was then seen as my last hope) there are a few new treatment have come online so there are new avenues that can be investigated if and when required.

23 years ago when I was first diagnosed there was a 10 years survival figure put on my condition....... that last time I spoke to the consultant who told me this he said "I am supposed to be the expert in this and honestly I have no idea now, but one thing is clear is that the information that people find out in the internet world is not keeping up with the unbelievable developments in research and drug role out....... just go live your life Mike" and his final task was to discharge me from his care and I have not seen him in over 4 years next week.... and only have yearly blood done by my GP.

Like Steve. I just can't give the answers you may be looking for but from my point of view 'the' most important thing I can say is to live in the moment and do your best to define how you live and not let the cancer and the 'what if's' define your lives.