Excellent explanation! A number of years ago I called the oncologist who was looking after my breast cancer patient to let her know that we had discovered that the cancer had returned. At the time that was an ominous prognosis and I was very worried for her. The oncologist took the time to review the many new treatments with me and she summarized by saying...I want you to now think of metastatic cancer as a chronic illness for which we have many treatment options. My patient lived another 2 decades and died in her early 90's. That was a pivotal point for me.
I had AML 13 years ago. Officially I got to say cured after five years of remission. I still don't use that word. It feels like tempting fate.
I would like to draw attention to this phrase from your article:
>>Before we start treatment, we always talk about the goals.
I think an interesting research study would be: A. what percentage of oncologists actually address this topic? B. what percentage of patients with whom this topic has been addressed retain this information?
That’s a great point. And a great research question. We have required it to be entered into our EMR so it’s clear to the team, but I think the patients may not always see the notes and I certainly know oncologists don’t always do the best job of explaining this concept. I might see if a med student interested in oncology could take on that project!
This part helped me a lot, since this is where I was hung up. “NED is more of a snapshot, while remission refers to a stretch of time. Both are considered very good news.” This helped me understand why remission isn't used a whole lot with stage 4. I have seen people vehemently attacked on metastatic breast cancer forums for using the term remission when it comes to their cancer, even though technically it probably could apply.
Thank you, Daniel. This gives us all a lot more clarity! May I share this in the Anthology?
In my experiences as a caregiver for my parents, and support to family/friends several over 70 years of age, the word 'palliative' can carry a heavy weight, when in fact these days with targeted treatment, this could lead to many more comfortable years.
I think the danger can be when the word 'intent' is omitted, and the patient hears 'palliative' and assumes this is akin to 'palliative care moving towards End-of-life.' Of course, no one can predict the length of controlled time, but there needs to be greater awareness of how things have changed.
My father had several health issues; he was receiving palliative treatment for congestive heart failure, his Rheumatoid arthritis, and an abdominal aortic aneurysm and was then diagnosed with bladder cancer. He had two bladder transection operations (TURBT) and managed 2+years more.
I'm sharing this to encourage us to have deeper and broader, holistic discussions about what 'palliative intent' actually entails with doctors and loved ones, keeping in mind their complete health profile.
I fear metrics, targets and shortened discussion times here in the UK. I'm concerned for older loved ones with old paradigms about 'soldiering on' or deferring without question to doctors, especially when they have several health issues.
I appreciate all your efforts and work, Daniel - this is a much-needed article!
P.S I wonder how this translates in other languages and cultures!
These are excellent points and those nuances can be missed in articles like this. Thanks for highlighting and feel free to use and add additional commentary if you think helpful.
Thank you for this very informative article! It explains a lot to me. My husband's scans show no trace of cancer, but his oncologist has told him he needs another round of chemo. He was very disappointed, but now he understands the necessity after they spent time talking it over.
This was so helpful. In the cancer group I am in, you hear these terms discussed and it's hard to figure them all out. Having clarity is not only helpful, it brings a sense of calm. That may seem counter-intuitive, but not knowing or being confused is the opposite. No one wants that. Give me the truth. Make it clear. Don't give me false hope, but don't confuse me so that I have fear of the unknown. I love Dr. Daniel and how he is straight up with everything, and gives us these the knowledge we need in plain language. If you, or a loved one, are facing cancer, you should subscribe to him.
Wow this is a great lexicon, thank you. If I understand correctly, the difference between NED and remission is not about crossing a threshold, but about consistency over time?
So the patient scenario you present is similar to my story.
Is it assumed that she will never be in remission for she will always be under chemotherapy given the chemotherapy is what is assumed to be keeping her scans clear?
A scan can show a patient with metastatic cancer to be NED; however, the patient must forever continue treatment for the chances of the cancer returning without chemo are 100%? Are there stories similar to the above scenario playing out where treatment is stopped and the cancer has not return?
Each patient is unique and every cancer is complex. For patients with metastatic cancer, the cancer typically has spread far beyond its original tissue. Unfortunately, we have yet to find a "cure" for most metastatic cancers. Therefore, many of the treatments are continued indefinitely with treatment breaks or "holidays." In the last decade we are starting to see some cancers even in the setting of metastatic disease go into long-term remission or "cured." Perhaps the best example of that is the story of immunotherapy for metastatic melanoma. I have patients who are alive and well with metastatic disease 10 years out who remain NED and are likely cured. We are getting there. A lot of work to do.
I have been in remission twice and am now facing a third episode of cancer. Awaiting news to see if a Radiologist can safely get a needle biopsy of the tumor. Scary stuff but I try to remain optimistic that I can achieve remission once again after they decide on a treatment plan
Thanks Karen! Yeah — I sometimes see that used and while it can be a bit more ambiguous I don’t think it’s wrong. I will sometimes say to patients there is no evidence of active disease on PET (sometimes PET scans give us a better view of disease activity than CT) but it’s often hard to say otherwise whether cancer is “active” or not.
Excellent explanation! A number of years ago I called the oncologist who was looking after my breast cancer patient to let her know that we had discovered that the cancer had returned. At the time that was an ominous prognosis and I was very worried for her. The oncologist took the time to review the many new treatments with me and she summarized by saying...I want you to now think of metastatic cancer as a chronic illness for which we have many treatment options. My patient lived another 2 decades and died in her early 90's. That was a pivotal point for me.
We’ve come a long way, but lots more work to be done!
What a great article! Thank you.
I had AML 13 years ago. Officially I got to say cured after five years of remission. I still don't use that word. It feels like tempting fate.
I would like to draw attention to this phrase from your article:
>>Before we start treatment, we always talk about the goals.
I think an interesting research study would be: A. what percentage of oncologists actually address this topic? B. what percentage of patients with whom this topic has been addressed retain this information?
That’s a great point. And a great research question. We have required it to be entered into our EMR so it’s clear to the team, but I think the patients may not always see the notes and I certainly know oncologists don’t always do the best job of explaining this concept. I might see if a med student interested in oncology could take on that project!
Cool beans!
Thank you for this post. It is easy to understand and helps clear up any remaining ambiguity I had between remission and NED.
I hope it was clear. I’ll have to admit, I felt a little confused myself when writing it all down.
This part helped me a lot, since this is where I was hung up. “NED is more of a snapshot, while remission refers to a stretch of time. Both are considered very good news.” This helped me understand why remission isn't used a whole lot with stage 4. I have seen people vehemently attacked on metastatic breast cancer forums for using the term remission when it comes to their cancer, even though technically it probably could apply.
Thank you for asking for clarification. This helps a lot.
Thank you, Daniel. This gives us all a lot more clarity! May I share this in the Anthology?
In my experiences as a caregiver for my parents, and support to family/friends several over 70 years of age, the word 'palliative' can carry a heavy weight, when in fact these days with targeted treatment, this could lead to many more comfortable years.
I think the danger can be when the word 'intent' is omitted, and the patient hears 'palliative' and assumes this is akin to 'palliative care moving towards End-of-life.' Of course, no one can predict the length of controlled time, but there needs to be greater awareness of how things have changed.
My father had several health issues; he was receiving palliative treatment for congestive heart failure, his Rheumatoid arthritis, and an abdominal aortic aneurysm and was then diagnosed with bladder cancer. He had two bladder transection operations (TURBT) and managed 2+years more.
I'm sharing this to encourage us to have deeper and broader, holistic discussions about what 'palliative intent' actually entails with doctors and loved ones, keeping in mind their complete health profile.
I fear metrics, targets and shortened discussion times here in the UK. I'm concerned for older loved ones with old paradigms about 'soldiering on' or deferring without question to doctors, especially when they have several health issues.
I appreciate all your efforts and work, Daniel - this is a much-needed article!
P.S I wonder how this translates in other languages and cultures!
These are excellent points and those nuances can be missed in articles like this. Thanks for highlighting and feel free to use and add additional commentary if you think helpful.
Thanks, Daniel. I'll be updating the cancer resources and anthologies of Carer Mentor over the following weeks.
Thank you for this very informative article! It explains a lot to me. My husband's scans show no trace of cancer, but his oncologist has told him he needs another round of chemo. He was very disappointed, but now he understands the necessity after they spent time talking it over.
This was so helpful. In the cancer group I am in, you hear these terms discussed and it's hard to figure them all out. Having clarity is not only helpful, it brings a sense of calm. That may seem counter-intuitive, but not knowing or being confused is the opposite. No one wants that. Give me the truth. Make it clear. Don't give me false hope, but don't confuse me so that I have fear of the unknown. I love Dr. Daniel and how he is straight up with everything, and gives us these the knowledge we need in plain language. If you, or a loved one, are facing cancer, you should subscribe to him.
Wow this is a great lexicon, thank you. If I understand correctly, the difference between NED and remission is not about crossing a threshold, but about consistency over time?
Thanks Anthony. Yes, I think that’s exactly right.
Thank you for taking the time to spell out this topic is straight-forward way. Very helpful
Thank you, Daniel — yours is a voice I trust.
Such a good summary of the different terms, thank you , Daniel.
So the patient scenario you present is similar to my story.
Is it assumed that she will never be in remission for she will always be under chemotherapy given the chemotherapy is what is assumed to be keeping her scans clear?
A scan can show a patient with metastatic cancer to be NED; however, the patient must forever continue treatment for the chances of the cancer returning without chemo are 100%? Are there stories similar to the above scenario playing out where treatment is stopped and the cancer has not return?
Each patient is unique and every cancer is complex. For patients with metastatic cancer, the cancer typically has spread far beyond its original tissue. Unfortunately, we have yet to find a "cure" for most metastatic cancers. Therefore, many of the treatments are continued indefinitely with treatment breaks or "holidays." In the last decade we are starting to see some cancers even in the setting of metastatic disease go into long-term remission or "cured." Perhaps the best example of that is the story of immunotherapy for metastatic melanoma. I have patients who are alive and well with metastatic disease 10 years out who remain NED and are likely cured. We are getting there. A lot of work to do.
Thank you for your explanation of the terms. It can be confusing.
I am so glad you are here with us.
I have been in remission twice and am now facing a third episode of cancer. Awaiting news to see if a Radiologist can safely get a needle biopsy of the tumor. Scary stuff but I try to remain optimistic that I can achieve remission once again after they decide on a treatment plan
Sending positive vibes your way
That’s such a helpful article Daniel.
It’s interesting that you don’t use NEAD (no evidence of active disease) in the US. I prefer it to stable in my own case.
Thanks Karen! Yeah — I sometimes see that used and while it can be a bit more ambiguous I don’t think it’s wrong. I will sometimes say to patients there is no evidence of active disease on PET (sometimes PET scans give us a better view of disease activity than CT) but it’s often hard to say otherwise whether cancer is “active” or not.
That’s really interesting.
We are only given CT scans with contrast on the NHS in the UK. I do know people who have private insurance and they do get PET scans here.
The article you’ve just posted about the different scans is really helpful too. Thank you Daniel.
Thank you. Your explanations are crystal clear.