Stage 2A Colorectal. 50-50 on doing chemo. Any thoughts?

Posted by alfred89 @alfred89, Aug 23, 2023

Details:

- colorectal surgery removal done
- T3N0M0 TNM
- 30 lymph nodes removed and all cleared
- margins all clear
- 39 years old
- currently w/ colostomy to be removed in 3 months
- congestive heart failure E/F 25% (recovered)

Hello all. I am trying to decide whether to do chemo or not and I’m really struggling to decide. I’m on the line of doing it and my oncologist said because of my young age, I can handle the FOLFOX fairly well. The reason for the T3 grading is the perforation of the colon wall but the mass was localized and didn’t go anywhere but they’d like to clean up with chemo as a further insurance policy. The only reason I’m very weary of doing the chemo is because of my history of heart failure. I’ve since recovered and my ejection fraction is back to 65-70% but I don’t know if my heart can take the 3 months of chemo recommended. My cardiologist has deferred the matter to the oncologist but doesn’t see why my heart couldn’t take it but I don’t know. There’s a risk of cardio toxicity which worries me the most. I know the numbers are 10-12% recurrence but part of me is willing to deal with 88% of non recurrence. I’m just so confused right now.

Anyone have thoughts or suggestions or can share an experience similar to mine?

Thank you for listening.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

I passed on chemo because both of my surgeons were very confident that all cancer had been removed.
Instead, I opted for blood tests and CT Scans every 4 months.
I suggested this plan and they agreed.

I had a 9 inch sigmoid colon resection with one of a dozen lymph nodes involved.
My colon cancer had also metastasized to my lower right lung. There I had a lung wedge resection of about 6 square inches and with all margins clear.

So now 15 months later all is good. I am happy with my decision and I do know that cancer could return. But it doesn't have to be colon or lung, it could be any cancer.
And as such, it would not necessarily be from not having chemo for many months or even years without chemo.
(There are people who had chemo for a year and cancer quickly returned thereafter).

I have never advised anyone to not have chemo.
This is a very personal decision and every situation is different.
Your situation is very unique at a young age and having a Cardiovascular history.
Yes, it is a tough decision.
I would pass until there is reason not to.
I really wish the very best for you going forward!
May you receive a blessing for a healthy life !!

REPLY

Having gone through Stage 3C colon cancer at age 68 which required removal of the whole colon and 108 lymph nodes, they thought they got it all, but the oncologist wanted to do adjunct chemo, which I completed in Dec 2021. They didn't give me odds on a recurrence. I too have some cardiac issues. I have 1 remaining suspicious spot which on last scan 4 months ago showed an increase in size - previous to that it had been decreasing. Too small to identify or biopsy at this time. I have another scan tomorrow. I'm playing the "wait and scan" cycle.

Net - I could be where none of us really want to go, even after my chemo, but we don't know.

As for your question, there isn't a clear black/white answer - it's a muddled gray which you make your best guess based on what you know. There are a lot of "We don't knows" in this situation.

First, there are no guarantees that chemo will prevent a future outbreak of cancer but it definitely helps. Second, there are things they can do with the chemo regimen if it's too destructive. They can change the amount and types of chemo - example: dropping the oxaliplatin or add rest time between the two week cycles or even stop chemo completely. Your experience will vary, but chemo can cause some side effects which take a while to heal, notably neuropathy - expect 1-2 months for full recovery for each month you're in chemo - typically 12 cycles at 2 week intervals for colon cancer.

All I can say is ask your medical providers as many questions as you can, do your own research on the web of the treatment regimen/side effects and peoples' experience with it, then make the most knowledgeable decision you can - don't second guess yourself after you've decided.

Hope this helps.

REPLY

I had colon cancer in 2016 (Stage one) in the right ascending colon and had a right hemicolectomy. Twenty lymph nodes were clear. No chemo or radiation needed.

In my annual checkup, my surgeon was telling me about a blood test that can detect a reoccurrence even before it shows up in a scan. She had a patient who had rectal cancer, and it was surgically removed. They analyze the DNA specific to your tumor and then do a blood test to look for this type of DNA in follow-ups. A year after her patient's surgery, the blood test was positive, but nothing showed up on a body scan. They were able to do chemo, and the results went back to normal. This has just become available--I do not know the name of the test. Since this test on my tumor was not available in 2016, it will not work for me. I would advise you to ask about it. Here is some information (healthline.com) that may be describing it. It is not a screen test for cancer--you have to have your tumor analyzed first and is used for checking for reoccurrence:

Doctors and scientists are working hard to identify and characterize new biomarkers for colorectal cancer. They’re also looking to improve strategies to detect and measure CRC biomarkers that have already been identified.

"In addition to what we’ve already discussed, two newer types of blood-based biomarkers for CRC are microRNA (miRNA) and long noncoding RNA (lncRNA).

miRNA: These are small strands of RNA that can play a role in controlling the types of proteins cells make. They can sometimes be found in the bloodstream. ResearchTrusted Source has documented changes in the levels of certain miRNAs in CRC compared with healthy individuals.
lncRNA: These are longer strands of RNA that can also sometimes be found in the blood. lncRNAs can also play a role in regulating how genes are expressed. A 2022 review Trusted Source notes that many lncRNAs have been associated with all stages of CRC.
Researchers are hoping to learn more about exactly how these molecules are associated with different aspects of CRC."

I would also advise you to get a second opinion, especially from a research hospital. A research hospital/center will have doctors who are also involved with the latest research on your cancer and how to treat it.

REPLY
@sbt19

I had colon cancer in 2016 (Stage one) in the right ascending colon and had a right hemicolectomy. Twenty lymph nodes were clear. No chemo or radiation needed.

In my annual checkup, my surgeon was telling me about a blood test that can detect a reoccurrence even before it shows up in a scan. She had a patient who had rectal cancer, and it was surgically removed. They analyze the DNA specific to your tumor and then do a blood test to look for this type of DNA in follow-ups. A year after her patient's surgery, the blood test was positive, but nothing showed up on a body scan. They were able to do chemo, and the results went back to normal. This has just become available--I do not know the name of the test. Since this test on my tumor was not available in 2016, it will not work for me. I would advise you to ask about it. Here is some information (healthline.com) that may be describing it. It is not a screen test for cancer--you have to have your tumor analyzed first and is used for checking for reoccurrence:

Doctors and scientists are working hard to identify and characterize new biomarkers for colorectal cancer. They’re also looking to improve strategies to detect and measure CRC biomarkers that have already been identified.

"In addition to what we’ve already discussed, two newer types of blood-based biomarkers for CRC are microRNA (miRNA) and long noncoding RNA (lncRNA).

miRNA: These are small strands of RNA that can play a role in controlling the types of proteins cells make. They can sometimes be found in the bloodstream. ResearchTrusted Source has documented changes in the levels of certain miRNAs in CRC compared with healthy individuals.
lncRNA: These are longer strands of RNA that can also sometimes be found in the blood. lncRNAs can also play a role in regulating how genes are expressed. A 2022 review Trusted Source notes that many lncRNAs have been associated with all stages of CRC.
Researchers are hoping to learn more about exactly how these molecules are associated with different aspects of CRC."

I would also advise you to get a second opinion, especially from a research hospital. A research hospital/center will have doctors who are also involved with the latest research on your cancer and how to treat it.

Jump to this post

Thank you for this information. I have spoken to 3 oncologists, and they’re all reading from the same script. More or less suggesting either 3 or 6 months of the FOLFOX treatment. They had kept bringing up the CEA level in my blood was low, which is a good thing, but it’s not used as a definitive biomarker just yet. I am close to NIH in Washington and will see if they have any available research or new information on the bio markers you mentioned. Thank you again.

REPLY
@rjjacobsen

Having gone through Stage 3C colon cancer at age 68 which required removal of the whole colon and 108 lymph nodes, they thought they got it all, but the oncologist wanted to do adjunct chemo, which I completed in Dec 2021. They didn't give me odds on a recurrence. I too have some cardiac issues. I have 1 remaining suspicious spot which on last scan 4 months ago showed an increase in size - previous to that it had been decreasing. Too small to identify or biopsy at this time. I have another scan tomorrow. I'm playing the "wait and scan" cycle.

Net - I could be where none of us really want to go, even after my chemo, but we don't know.

As for your question, there isn't a clear black/white answer - it's a muddled gray which you make your best guess based on what you know. There are a lot of "We don't knows" in this situation.

First, there are no guarantees that chemo will prevent a future outbreak of cancer but it definitely helps. Second, there are things they can do with the chemo regimen if it's too destructive. They can change the amount and types of chemo - example: dropping the oxaliplatin or add rest time between the two week cycles or even stop chemo completely. Your experience will vary, but chemo can cause some side effects which take a while to heal, notably neuropathy - expect 1-2 months for full recovery for each month you're in chemo - typically 12 cycles at 2 week intervals for colon cancer.

All I can say is ask your medical providers as many questions as you can, do your own research on the web of the treatment regimen/side effects and peoples' experience with it, then make the most knowledgeable decision you can - don't second guess yourself after you've decided.

Hope this helps.

Jump to this post

Sounds good, thank you for sharing your experience.

My surgeon and GI both said the same thing, essentially that I straddle the line of doing 3 months of chemo or playing the observation game.

How bad was your neuropathy? This seems to be the most common issue with chemo. We’re you able to recover from this? Also, did you feel any major changes with your heart, during and after treatment?

It’s a gamble in my case given the situation but I agree that whichever decision I make, I can’t second guess it.

Thanks again.

REPLY

Just received news from my PET scan and entire body is clear. Happy for that.

REPLY
@alfred89

Just received news from my PET scan and entire body is clear. Happy for that.

Jump to this post

Great news!

REPLY
@alfred89

Sounds good, thank you for sharing your experience.

My surgeon and GI both said the same thing, essentially that I straddle the line of doing 3 months of chemo or playing the observation game.

How bad was your neuropathy? This seems to be the most common issue with chemo. We’re you able to recover from this? Also, did you feel any major changes with your heart, during and after treatment?

It’s a gamble in my case given the situation but I agree that whichever decision I make, I can’t second guess it.

Thanks again.

Jump to this post

Neuropathy was definitely there for me in my feet (mainly) and hands. It was more a numbness for me, but you won't want to walk on cold floors. I found "chemo brain" to be worse as my mind simply did not work very fast.

REPLY
@paul28

I passed on chemo because both of my surgeons were very confident that all cancer had been removed.
Instead, I opted for blood tests and CT Scans every 4 months.
I suggested this plan and they agreed.

I had a 9 inch sigmoid colon resection with one of a dozen lymph nodes involved.
My colon cancer had also metastasized to my lower right lung. There I had a lung wedge resection of about 6 square inches and with all margins clear.

So now 15 months later all is good. I am happy with my decision and I do know that cancer could return. But it doesn't have to be colon or lung, it could be any cancer.
And as such, it would not necessarily be from not having chemo for many months or even years without chemo.
(There are people who had chemo for a year and cancer quickly returned thereafter).

I have never advised anyone to not have chemo.
This is a very personal decision and every situation is different.
Your situation is very unique at a young age and having a Cardiovascular history.
Yes, it is a tough decision.
I would pass until there is reason not to.
I really wish the very best for you going forward!
May you receive a blessing for a healthy life !!

Jump to this post

Paul28, I'm leaning toward not doing Chemo. I'm still trying to learn more and I wish you the very best!

REPLY
@tray1961

Paul28, I'm leaning toward not doing Chemo. I'm still trying to learn more and I wish you the very best!

Jump to this post

Well, Tray, best wishes to you! ....and definitely continue to learn more everyday!
Like with everything, there are certainly people that are very thankful for having chose Chemotherapy and others who have expressed regret on this forum.
And that's what makes this one of life's toughest decisions.
I think that too many are very early on referred to Oncology and don't get past the opinion of one Oncologist.
Someone here once posted that they did get second opinions and the Oncologists all "seemed to work from the same playbook". I personally spent time seeking answers to questions from two Oncologist and found that to be true.
My decision really came back to the confidence that I heard from my colon and lung surgeons that all of my cancer in both organs had been removed.
By doing close rounds of blood tests and scans, I believed that we could find that opinion to be true or not rather quickly.
So 15 months later after Stage IV colerectal cancer, I am healthy and having good quality of life!
While this is my story, others of similar circumstances have not fared as well. That's what makes this a very personal and individualized decision.
I hope that your decision proves to be your correct and ultimate blessing!
Paul

REPLY
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