Scan Meanings, Help Please

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Alreadyhere
Posts: 89
Joined: Wed Oct 03, 2012 6:38 pm

Scan Meanings, Help Please

Postby Alreadyhere » Fri Jul 23, 2021 12:43 pm

Can anyone provide clarification. There has been no treatments since the end of 2017. Doctor has never declared remission (stage 4) but since this time period all scans have said calcified lymph node unchanged not lymphadenopathy by size criteria (was cancerous and has had radiation to area in 2017-last treatment ever received )and no evidence of recurrent or progressive disease. The words No evidence of disease have never been listed but are we safe to assume no evidence of recurrent or progressive disease is the same as NED? If it is different or if the calcification of lymph node that is unchanged in size for 3 years means not NED can someone please clarify ?
Last edited by Alreadyhere on Sun Jul 25, 2021 7:31 am, edited 1 time in total.
DH Diagnosed 2012 @ 34 stage iv
Resection/Folfox
Confirmed distant LN
Radiation
More distant LN
Folfiri + Avastin
Stable - No shrinkage or Growth
Erbitux only for past 2 years
More distant lymph nodes
Radiation
Stable and off treatment since Fall 2017.

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Scan Meanings what qualifies as NED?

Postby Jacques » Fri Jul 23, 2021 11:16 pm

O Stoma Mia wrote:For your information, the acronym NED is usually defined as:

NED - No Evidence of Disease

There are several things that can be said about this concept.
.
  • This is essentially "street language" for the more technical term,"In remission". In official correspondence and in professional journal articles the term "In remission" is usually preferred because it has a definition that is more stable and is usually understood the same way by medical professionals and patients alike.

    Remission: What Does It Mean?
    https://www.webmd.com/cancer/remission-what-does-it-mean
    .

NOTE: I have included several additional bullet points above to signify that there is a quite a lot more that can be said about the concept of "NED", but this is not the place to discuss all of those details. At this point is is only necessary to understand that NED typically means "No evidence of disease", and that it does not mean "No existing disease"

drmike
Posts: 3
Joined: Tue Jul 25, 2023 9:49 pm

Re: Scan Meanings, Help Please

Postby drmike » Fri Jul 28, 2023 8:06 am

Alreadyhere wrote:Can anyone provide clarification. There has been no treatments since the end of 2017. Doctor has never declared remission (stage 4) but since this time period all scans have said calcified lymph node unchanged not lymphadenopathy by size criteria (was cancerous and has had radiation to area in 2017-last treatment ever received )and no evidence of recurrent or progressive disease. The words No evidence of disease have never been listed but are we safe to assume no evidence of recurrent or progressive disease is the same as NED? If it is different or if the calcification of lymph node that is unchanged in size for 3 years means not NED can someone please clarify ?


Hi Alreadyhere! I just want to say thank you for sharing you and your husband's journey. My situation is almost identical to yours as I was diagnosed stage 3 1.5 years ago. I underwent a successful surgery followed by Folfox chemo for 6 months. Following chemo and a subsequent CT scan (August 2022), it seemed that I was cancer free. At my next scan (December 2022), 3 retroperitoneal (para-aortic) lymph nodes appeared slightly at/above size criteria. My Onc discounted them as not related to my situation....well 3 and 6 months later they slightly increased in size. I am heading to the hospital today for a PET scan to confirm cancer and begin the next step of treatment. I have the same worries/fears that you and your husband do....I am 43 years old with a lot of life to live with my wife and daughter. your story has helped give me the added strength I need to know I still can still be here for years to come.

Thank you,
Michael

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Scan Meanings, Help Please

Postby rp1954 » Fri Jul 28, 2023 2:04 pm

drmike wrote:My situation is almost identical to yours as I was diagnosed stage 3 1.5 years ago. I underwent a successful surgery followed by Folfox chemo for 6 months. Following chemo and a subsequent CT scan (August 2022), it seemed that I was cancer free. At my next scan (December 2022), 3 retroperitoneal (para-aortic) lymph nodes appeared slightly at/above size criteria. My Onc discounted them as not related to my situation....well 3 and 6 months later they slightly increased in size. I am heading to the hospital today for a PET scan to confirm cancer and begin the next step of treatment. I have the same worries/fears that you and your husband do....I am 43 years old with a lot of life to live with my wife and daughter. your story has helped give me the added strength I need to know I still can still be here for years to

Distant LN are most conventionally treatable if they are oligometastatic and have especially targetable weaknesses. e.g. MSI - anti-PD-1 tx, or the most favorable of targeted Erbitux cases, like Anywhere. Common versions of distant LN with bad markers need extra diligence and special attention. If the latter, you probably need to go far beyond average SOC to be successful.

Depending on what "dr" you have, you might get a current version of NCCN Clinical Practice Guidelines in Oncology, and see if they have added any useful footnotes over the last 5 years.
Last edited by rp1954 on Fri Jul 28, 2023 2:21 pm, edited 1 time in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

drmike
Posts: 3
Joined: Tue Jul 25, 2023 9:49 pm

Re: Scan Meanings, Help Please

Postby drmike » Fri Jul 28, 2023 2:32 pm

rp1954 wrote:
drmike wrote:My situation is almost identical to yours as I was diagnosed stage 3 1.5 years ago. I underwent a successful surgery followed by Folfox chemo for 6 months. Following chemo and a subsequent CT scan (August 2022), it seemed that I was cancer free. At my next scan (December 2022), 3 retroperitoneal (para-aortic) lymph nodes appeared slightly at/above size criteria. My Onc discounted them as not related to my situation....well 3 and 6 months later they slightly increased in size. I am heading to the hospital today for a PET scan to confirm cancer and begin the next step of treatment. I have the same worries/fears that you and your husband do....I am 43 years old with a lot of life to live with my wife and daughter. your story has helped give me the added strength I need to know I still can still be here for years to

Distant LN are most conventionally treatable if they are oligometastatic and have especially targetable weaknesses. e.g. MSI - anti-PD-1 tx, or the most favorable of targeted Erbitux cases, like Anywhere. Common versions of distant LN with bad markers need extra diligence and special attention. If the latter, you probably need to go far beyond average SOC to be successful.

Depending on what "dr" you have, you might get a current version of NCCN Clinical Practice Guidelines in Oncology, and see if they have added any useful footnotes over the last 5 years.


Thank you for the reply rp1954, I really appreciate your insight. Admittedly, this news came as a shock, and I am still processing. I'm hoping since my PET only showed 3 retroperitoneal nodes, that stand a good chance of wiping them out with chemo. I realize the recurrence rate is high but hoping there is some science supporting localized ln metastasis is associated with better odds.


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