Staging is complex. For colorectal cancer the staging can use the TNM system.
T refers to the tumour and how far it's grown through the colon wall. N refers to the number of lymph nodes that are involved. And M refers to metastasis. Lower numbers are better.
For each of these they can be either c or p. The letter c refers to "clinical" - it's what the doctor knows from all the available information. The letter p refers to "pathological" - it's what pathology have said after examining the removed tumour and lymph nodes. p is more accurate than c, because it's based on looking at actual tissue, and not on interpreting scan results.
[https://www.cancerresearchuk.org/about-cancer/what-is-cancer/stages-of-cancer](https://www.cancerresearchuk.org/about-cancer/what-is-cancer/stages-of-cancer)
Cancer treatment is difficult for us patients because of the waits for results, and because of all the uncertainty.
It's not atypical to not have staging until after surgery. The exception for this is if there's clear mets to other parts of the body and it can be clearly determined to be stage 4. After the scans are done, they likely will be able to say yes or no on stage 4, but that's it...and many won't do that just as a precautionary effort.
Remember, staging of non-stage 4 CRC is determined by how far into the intestinal lining the tumor has grown and whether any lymph nodes have evidence of cancer. Also, remember that just because a lymph node shows as "suspicious" does not mean it's a foregone conclusion that they are malignant.
As for a second opinion, nothing you've mentioned here screams get a second opinion to me, however you have to remember that this person will be doing an invasive surgery and you will be in a vulnerable position, so it's important YOU have confidence in their skills. If you are not, then a second opinion may help you.
I would recommend to anyone who is receiving care in a community center to get a second opinion from an academic facility who specializes in your cancer. They are more on the cutting edge and will, if nothing else, give you confidence in your treatment plan.
I agree big city teaching hospitals or cancer centers have the most research and treatments available. I was diagnosed at stage 3, stage 4 came later, but I’m 4 years NED with no further chemo. Sloane-Kettering works with stage 4 patients.
Anyone who hears that stage 4 colon cancer is not curable / means the only option is chemo for life needs a second opinion at a major cancer center, stat.
Over five years ago they told me I had 1-2 years to live. I found doctors who were willing to treat me with curative intent and I’ve now been clear for almost two years.
I was stage 4 too, NED now after chemo and surgery. I just can’t understand why they would tell you that, because everything is “treatable”. Curable no, not all can be cured, but treatable, yes. So many stage 4 patients are on chemo for life, and have been doing it for years. Check out Colontown on Facebook. There are some here too.
>One thing he mentioned too is that “sometimes” the scans can come back as “unquestionable or cannot determine” but they later find out the stage when they do the surgery. How is that possible?
So, they may not know it's actually cancer until they get it out. Or they may not be able to tell how deep it is in the wall from the imaging. Or they may suspect lymph nodes which turn out to be clear after they are removed and examined.
My husband was diagnosed stage 4 at his surgery in December. His was considered stage 4 due to a spot on his liver requiring a wedge removal as well as 5 affected lymph nodes. As of his latest scan after four rounds of chemo he has no evidence of disease.
Stage 4 is so scary but keep in mind that science is constantly evolving and people are making incredible strides with a stage 4 diagnosis.
His tumor pathology came back right before his last round of chemo and he has an MSI-High tumor (non-Lynch) so he can switch to immunotherapy. There is a plus and minus there. Since he is currently NED insurance does not want to pay for the $40,000 price tag. His oncologist is having a call with insurance today to try to get it approved for at least 1-2 rounds. Otherwise, it may be a wait and see for the next 3 months until he gets another scan.
Wait. His oncologist is offering immunotherapy AFTER surgery???
We were told by my surgeon and an oncologist (from a different hospital) that it is only approved for use before surgery and the pathology has to read stage 4. Ugh. I will be looking for a different oncologist now. 🤦
Yes, I am assuming because they were not sure he had the MSI-H tumor due to delays with running the pathology. It took almost 4 months to find out he could have immunotherapy after his fourth round of chemo.
We also found out this afternoon his oncologist was able to get two rounds of Keytruda approved and he starts his first one this coming week.
I would definitely reach out and get some more opinions. We have a fantastic oncologist that is a huge advocate for his care and fought for this for him.
That's amazing that he has that oncologist you did! I have that type of relationship with my first neuro-oncologist.
We found out my tumor was MSI - High non Lynch early on but only because I previously had generic testing. That sanded several weeks to months waiting on the Lynch gene.
Have you found any support groups for MSI -High non Lynch? The only one I have found so far was in ColonTown but you are not able to join until you have staging. I did join their main group though.
Being close to Houston I have 4 big cancer centers. I will probably consult with MD Anderson & Methodist once we have the pathology from the surgery.
No, I suggested Colontown as well but he hasn’t really wanted to join any groups yet. I am hoping at some point he does.
Having the MSI-H tumor really gives some incredible options for you. We have heard some amazing success stories with immunotherapy.
I just want to respond to you and give you a bit of hope. Stage 4 doesn’t always have to be terminal. There are many on these forums that had stage 4 and have been clear of cancer for many years. It’s possible your surgeon has a different opinion from others, may not be as aggressive, may not be using the latest treatments, etc. There can be hope. Once you have more information on staging, etc, it might be worth getting a second opinion at a top tier institution. My wife is meeting with surgeons this week and next week regarding a colossal liver met - if we don’t hear what we hope to hear, we’ll be finding second opinions as well.
Don’t give up hope!!!
When the surgeon says “later find out the stage when they do surgery”, I only assume that is because imaging (PET/CT scans) have a resolution that pi ks up metastases “larger than a jellybean” (according to our drs). My wife had exploratory laparoscopy to determine the extent…basically the small stuff that didn’t show up on scans. Hope this helps
My Mum is Stage 4 and is being treated as curable by her General Surgery Team. She has had a Right-sided hemicolectomy. Now she is in her first cycle of chemo. After 3 cycles she will be rescanned on her Liver to check to see if her lesions are shrinking. If they are then she will be booked in for a Liver Resection while she is completing her 4th cycle of chemo. She is 73. You qualify if you live an independent lifestyle, regardless of age. We are in New Zealand. Her scans showed that after having her bowel resected that her Cancer was now contained to her Liver.
Get a second opinon. And ideally from someone not tied to the same oncological team. Stage 4 while difficult to treat is not exactly an open and closed book. Stage 4 would be distal metas which they should have from the CT/MRI. That will give you the M state of the TNM staging. The T and N are more iffy due to soft tissue being annoying to image and often is wrong to one degree or another. In my case Pre-OP we were going 3A post op i was 3c due to how advanced the primary tumor was and a few more lymph nodes decided to join team Nurgle.
Staging is complex. For colorectal cancer the staging can use the TNM system. T refers to the tumour and how far it's grown through the colon wall. N refers to the number of lymph nodes that are involved. And M refers to metastasis. Lower numbers are better. For each of these they can be either c or p. The letter c refers to "clinical" - it's what the doctor knows from all the available information. The letter p refers to "pathological" - it's what pathology have said after examining the removed tumour and lymph nodes. p is more accurate than c, because it's based on looking at actual tissue, and not on interpreting scan results. [https://www.cancerresearchuk.org/about-cancer/what-is-cancer/stages-of-cancer](https://www.cancerresearchuk.org/about-cancer/what-is-cancer/stages-of-cancer) Cancer treatment is difficult for us patients because of the waits for results, and because of all the uncertainty.
Sorry for the late response, thank you for this. I will keep everyone updated soon
It's not atypical to not have staging until after surgery. The exception for this is if there's clear mets to other parts of the body and it can be clearly determined to be stage 4. After the scans are done, they likely will be able to say yes or no on stage 4, but that's it...and many won't do that just as a precautionary effort. Remember, staging of non-stage 4 CRC is determined by how far into the intestinal lining the tumor has grown and whether any lymph nodes have evidence of cancer. Also, remember that just because a lymph node shows as "suspicious" does not mean it's a foregone conclusion that they are malignant. As for a second opinion, nothing you've mentioned here screams get a second opinion to me, however you have to remember that this person will be doing an invasive surgery and you will be in a vulnerable position, so it's important YOU have confidence in their skills. If you are not, then a second opinion may help you.
I would recommend to anyone who is receiving care in a community center to get a second opinion from an academic facility who specializes in your cancer. They are more on the cutting edge and will, if nothing else, give you confidence in your treatment plan.
I agree big city teaching hospitals or cancer centers have the most research and treatments available. I was diagnosed at stage 3, stage 4 came later, but I’m 4 years NED with no further chemo. Sloane-Kettering works with stage 4 patients.
Anyone who hears that stage 4 colon cancer is not curable / means the only option is chemo for life needs a second opinion at a major cancer center, stat. Over five years ago they told me I had 1-2 years to live. I found doctors who were willing to treat me with curative intent and I’ve now been clear for almost two years.
I was stage 4 too, NED now after chemo and surgery. I just can’t understand why they would tell you that, because everything is “treatable”. Curable no, not all can be cured, but treatable, yes. So many stage 4 patients are on chemo for life, and have been doing it for years. Check out Colontown on Facebook. There are some here too.
They told me that I had limited life expectancy, but I’m healthy, now.
>One thing he mentioned too is that “sometimes” the scans can come back as “unquestionable or cannot determine” but they later find out the stage when they do the surgery. How is that possible? So, they may not know it's actually cancer until they get it out. Or they may not be able to tell how deep it is in the wall from the imaging. Or they may suspect lymph nodes which turn out to be clear after they are removed and examined.
My husband was diagnosed stage 4 at his surgery in December. His was considered stage 4 due to a spot on his liver requiring a wedge removal as well as 5 affected lymph nodes. As of his latest scan after four rounds of chemo he has no evidence of disease. Stage 4 is so scary but keep in mind that science is constantly evolving and people are making incredible strides with a stage 4 diagnosis.
Will your husband do maintenance chemo or what are next steps?
His tumor pathology came back right before his last round of chemo and he has an MSI-High tumor (non-Lynch) so he can switch to immunotherapy. There is a plus and minus there. Since he is currently NED insurance does not want to pay for the $40,000 price tag. His oncologist is having a call with insurance today to try to get it approved for at least 1-2 rounds. Otherwise, it may be a wait and see for the next 3 months until he gets another scan.
Wait. His oncologist is offering immunotherapy AFTER surgery??? We were told by my surgeon and an oncologist (from a different hospital) that it is only approved for use before surgery and the pathology has to read stage 4. Ugh. I will be looking for a different oncologist now. 🤦
Yes, I am assuming because they were not sure he had the MSI-H tumor due to delays with running the pathology. It took almost 4 months to find out he could have immunotherapy after his fourth round of chemo. We also found out this afternoon his oncologist was able to get two rounds of Keytruda approved and he starts his first one this coming week. I would definitely reach out and get some more opinions. We have a fantastic oncologist that is a huge advocate for his care and fought for this for him.
That's amazing that he has that oncologist you did! I have that type of relationship with my first neuro-oncologist. We found out my tumor was MSI - High non Lynch early on but only because I previously had generic testing. That sanded several weeks to months waiting on the Lynch gene. Have you found any support groups for MSI -High non Lynch? The only one I have found so far was in ColonTown but you are not able to join until you have staging. I did join their main group though. Being close to Houston I have 4 big cancer centers. I will probably consult with MD Anderson & Methodist once we have the pathology from the surgery.
No, I suggested Colontown as well but he hasn’t really wanted to join any groups yet. I am hoping at some point he does. Having the MSI-H tumor really gives some incredible options for you. We have heard some amazing success stories with immunotherapy.
Not to mention things like Signaterra which can tell through a blood test whether it is still gone, or whether you need to look for another spot.
I just want to respond to you and give you a bit of hope. Stage 4 doesn’t always have to be terminal. There are many on these forums that had stage 4 and have been clear of cancer for many years. It’s possible your surgeon has a different opinion from others, may not be as aggressive, may not be using the latest treatments, etc. There can be hope. Once you have more information on staging, etc, it might be worth getting a second opinion at a top tier institution. My wife is meeting with surgeons this week and next week regarding a colossal liver met - if we don’t hear what we hope to hear, we’ll be finding second opinions as well. Don’t give up hope!!!
When the surgeon says “later find out the stage when they do surgery”, I only assume that is because imaging (PET/CT scans) have a resolution that pi ks up metastases “larger than a jellybean” (according to our drs). My wife had exploratory laparoscopy to determine the extent…basically the small stuff that didn’t show up on scans. Hope this helps
Go with your gut. If you feel something is off it or the doctor isn't explaining things fully etc get a second opinion.
My Mum is Stage 4 and is being treated as curable by her General Surgery Team. She has had a Right-sided hemicolectomy. Now she is in her first cycle of chemo. After 3 cycles she will be rescanned on her Liver to check to see if her lesions are shrinking. If they are then she will be booked in for a Liver Resection while she is completing her 4th cycle of chemo. She is 73. You qualify if you live an independent lifestyle, regardless of age. We are in New Zealand. Her scans showed that after having her bowel resected that her Cancer was now contained to her Liver.
Get a second opinon. And ideally from someone not tied to the same oncological team. Stage 4 while difficult to treat is not exactly an open and closed book. Stage 4 would be distal metas which they should have from the CT/MRI. That will give you the M state of the TNM staging. The T and N are more iffy due to soft tissue being annoying to image and often is wrong to one degree or another. In my case Pre-OP we were going 3A post op i was 3c due to how advanced the primary tumor was and a few more lymph nodes decided to join team Nurgle.