No evidence of disease (NED) - Ronny Allan - Living with Neuroendocrine Cancer

Tag: No evidence of disease (NED)

Understanding the Difference Between Cure and Remission

Cure means that there are no traces of your cancer after treatment and the cancer will never come back.

Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.

If you remain in complete remission for 5 years or more, some doctors may say that you are cured. Still, some cancer cells can remain in your body for many years after treatment. These cells may cause the cancer to come back one day. For cancers that return, most do so within the first 5 years after treatment. But, there is a chance that cancer will come back later. For this reason, doctors cannot say for sure that you are cured. The most they can say is that there are no signs of cancer at this time. Sometimes this is called No Evidence of Disease (NED)

Because of the chance that cancer can come back, your doctor will monitor you for many years and do tests to look for signs of cancer’s return. They will also look for signs of late side effects from the cancer treatments you received.

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Musings from a metastatic NET patient of 12 years plus In every surveillance session I've had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to "stable". After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

18Sep 2022 by Ronny Allan No Comments

Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Patient Advocacy, Survivorship

An opinion postCureI once wrote an article called "Neuroendocrine Cancer - can it be cured". In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be. At the other end of the scale, I covered guidelines where doctors talk about removing tumours with "curative intent", clearly in reference to small localized tumour scenarios. I'm pretty sure in my own mind that this does happen. As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing "no follow up" related to size and…

16Oct 2017 by Ronny Allan 2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

OPINION:"Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But the latest statistics (and even these can be said to be quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for…