Stage IV mCRC... technically - Chemo or no?

MrMustang

Hi everyone! Long time lurker but my first post. Looking for thoughts and perspectives from fellow survivors.

About 5 years about I found that I had stage 1B CRC in the Sigmoid - followed by successful resection with clean margins. Based on that the onco did not prescribe chemo. It was a 5-year waiting game, and if clear after that I would be considered cured.

About 2 years ago - for unrelated reasons - I had a chest CT that found a 7mm nodule on my upper lung. It was in a spot that couldn't be biopsied so the protocol was to observe/monitor - I have had several follow-up CTs since. This year the follow-up showed changes - now 10mm - not good.

Still no option for biopsy - the next step was a surgical sample and then pathology. Sample showed mCRC consistent with my original tumor. This meant a surgical resection of tumor from the lung -success with clean margins.

Because this was met from the original I jumped from Stage I-B to IV. Now the onco wants me on FOLFOX chemo.

But I am thinking that surgery was clean, follow-up PET shows no additional mets, my CEA is normal. I had a new test called Signatera (looks for circulating tumor DNA) that shows 0 (zero)/negative for "floaters". While I am technically Stage IV since this was mCRC, there is either no or an extremely small amount of cancer in my body right now.

I am 51 and given the serious, potentially life-long side effects of chemo I am trying to do a personal risk analysis of getting on chemo where I am at right now. I recognize that since this was a met that there very well could be more. But all testing doesn't indicate that.

Thoughts about going ahead with chemo vs. take a wait and see approach, i.e. CEA/Signatera monitoring?

SandiaBuddy

Whoa, that is certainly a tough situation to find oneself in. I was a 3b and found myself on the fence about chemo. Eventually, I did it, I suppose to know that I did everything in my power to reduce the risk of further cancer. However, in retrospect, I wish I had not. There decisions are tough, tough, tough and I am sure you will elicit a variety of thoughtful opinions.

MrMustang

https://csn.cancer.org/discussion/comment/1697012#Comment_1697012

What, in retrospect, makes you wish you had not? Yes, this is a very tough decision.

Trubrit

I am sorry to hear this. It is awful, when you think things are going just dandy, then to have it all pop up again.

Did they say if they thought the lung met had been there all along? Maybe it had travelled from your original CRC tumour, and lay dormant or too small to be scanned.

We all of us have Cancer cells in the body, it is just that the body normally takes care of them. So really, who knows.

I don't know what I would do in your position - and I hope never to have to find out. Certainly FOLFOX was wicked on my body, and even though I am nine years out from treatment, I live (and am happy to be alive) with the side effects. Some people have been lucky enough to breeze through FOLFOX, but I think it is not the norm.

How many treatments are they talking about? I know that recent studies have shown six to be effective. I think I would go for a limited number of treatments - definitely not the 12 that most people have - I had nine.

Good luck making your decision.

Tru

Real Tar Heel

https://csn.cancer.org/discussion/325192/stage-iv-mcrc-technically-chemo-or-no

Tough situation. Thanks for finally pipping up! We need a variety of experiences to show the lurkers what they might be in for. I was on adjuvant therapy for several months but I experienced a recurrence nevertheless. I also had a "normal" CEA when I started.

The science is not in a place where a doctor can tell you definitively whether treatment failed given the nature of the disease. My docs were upfront about that; adjuvant therapy may be helpful or it may not. For me, the side effects from FOLFOX were tolerable except for the nerve damage. I decided to stop taking the drug that caused it but continued the others (my bio has most of the details on my treatment path). I think during year one, many of us are concerned and will try anything to stop the progression of the disease, but it sounds like you've weathered a couple of storms already. Your body seems to be a tough one. But, if you want to err on the side of caution, maybe you want to try chemo.

Capox Dude

I did 3 months of Capox to limit my nerve damage side effects, and would do it again. Folks with a good experience will recommend it, folks with a bad one will not.

To me, Stage IV would lean me to chemo to kill other lurkers….if they are lurking. Good luck. Whatever you decide is right- for you.

Soundings

https://csn.cancer.org/discussion/325192/stage-iv-mcrc-technically-chemo-or-no

[Content removed by CSN Support Team.]

There have been recent articles about Signetera being less accurate for peritoneal and lung mets. https://www.cityofhope.org/breakthroughs/researcher-advises-doctors-against-overreliance-on-liquid-biopsy

Signetera has been very helpful for my wife, who is stage 4, for lymph, liver, and colon. But I would not rely on it for lung. And CEA is not always a reliable marker.

What does your medical team suggest as your pathway to NED?

STI_1911

https://csn.cancer.org/discussion/325192/stage-iv-mcrc-technically-chemo-or-no

I was on stage 3 and went through CAPOX chemo (partially). There are studies around saying that 50% are cured by surgery alone, 20% will be cured after chemo and 30% will have recurrance disregarded of chemo or not. So in my case only 20% benefit. But i decided to go for it and take that extra 20%.

What i am saying is, did your onco calculate risk against benefit? Would that help you with the decision? ctDNA is not a common test to have (at least not in Europe) but if that shows "0", what other facts do you need for your decision.

I wish i had a ctDNA scan to help me with the decision.

Let us know what you decided for

cheers

Guido

jdicksonmd

I am a physician who currently on folfox treatment 7 out of 12 for rectal cancer. Chemo does suck. I personally would do the chemo. I had a 60 percent cure rate with surgery alone but it goes up to the 80s with the chemo. It apparent has a metastatic component since it went to the lungs. BTW when I had received diagnosis in january after a cscope. I had a ct scan of abdomen and pelvis that was totally normal. That was a surprise to me. I use ct scans at work all the time. I have told many people that they had cancer but it being directed to you is a whole different experience. best of luck with your decision. there are a lot of us struggling with these decisions