Just diagnosed: Surgery not an option, looking for hope

@cliffe75 Absolutely, check these things out…i had a rare and aggressive tumor, dMMR and immunotherapy knocked out all the cancer in only a few treatments…and surgery followed up….i had told the oncologist I really wanted an alternative to chemo…and the genetic testing was key. Good luck !

I suggest to seek a 2nd opinion, I have seen in many posts on colontown how people were told surgery not an option and later on they qualified for it. Also, liver and lung mets are treatable with little hospital stay, assuming not a lot of them. I have my liver mets treated with microwave ablation, I was out and about in 1 day. My oncologist told me they have means to treat lung and peritoneal mets too. So, please seek 2nd opinion, preferably from a larger cancer center.

@nycmusic edit-i should mention that i was told my tumor was too big for safe and successful surgery….thank heaven for the immunotherapy…i hope it becomes more available to far more people !

In my third year of chemo for stage 4 colon cancer. Same location as yours. Originally mets were in peri and other places along outside of colon. Told not operable. Cea started in mid 40s now in single digits. Chemo consisted of 5 floro and another drug. Last scan showed only liver tumors but they have shrunk. Suddenly surgeon says Im now operable (although high risk of returning). Bottom line chemo has improved significantly. It’s still a chore but not like it was even a few years ago. Be heartened. The best defense to what lies ahead is a good attitude.

My wife was diagnosed with Stage 4 Colon Cancer with a large tumor in that same location and significant mets to her liver.
She was told she had 12 months and to go home and make her arrangements. We didn’t like that answer so we obtained second opinions from well know colon and liver surgeons.

Colon surgeon removed her tumor with ‘curative’ surgery and six months of chemo later her liver tumors had reduced to the point allowing a 50% liver resection four weeks ago. Liver surgeon believes she is now cancer free and doesn’t require any more chemo.

Takeaway is be relentless in looking for alternative options. It’s a ton of work and possible expense but in our case it appears to have saved her life.

@wku I have stage 3 CRC . I've done chemo and radiation.Look up Chris Wark he is a Colon cancer survivor, his square one program is inspirational. God Bless

@wku
So True: Attitude with gratitude for just seeing another morning, a bird landing in a tree and chirping, a red velvet ant crosses your path' usually considered a good omen. Facing any unknown is unraveling but a good and grateful attitude usually stays one's course. Hang in there,.
jofree

@sbelyea
Keeping abreast of other options always is a wise decision. Taking a proactive part in your search may rattle some physicians; pass these folks on by. It is your body and your life so seeking out additional therapies and enlisting a trusted person to keep you in good perspective's is also beneficial.
jofree

I'm sorry to hear about your diagnosis. I am 56 and first was diagnosed with stage I colon cancer in 2021 at 52. I got surgery Jan 2022, which was optional (to be sure it was gone) and all lymph nodes negative. About a year and a half later, I had a recurrence in my peritoneum. After another colectomy in 2024 and CAPOX chemo after, they told me I had stage IV. They would not give me a prognosis because they said my recurrence was so rare. This was frustrating because we had hoped we took care of it with radical surgery the first time. I have had surveillance every 3 months with scans, bloodwork and Signatera (which I had done research on and wanted to add). I have had normal scans and signatera for a year and 5 months now I suddenly have a positive Signatera (minimum residual disease) Test. This means I have a 97% chance of another recurrence and there is cancer DNA in my blood that matches my original tumor. My type of gene mutation (KRAS G12S) is only found in 1.86 percent of colon cancer patients and does not respond to immunotherapy. I am looking at clinical trials now. I wanted to post because I feel your frustration and struggle to find hope during colon cancer and can understand your fears. I think there is a lot of good research going on for cures. I will be praying for healing and peace for you. My faith is what helps me. The emotional toll of cancer is something that is often overlooked and is, for me, the worst part. I am adding you to my list of daily prayers. I not only wish you time, but time with minimal feeling sick and free from having to only eat bland, lukewarm things. That was the hardest part of chemo for me...and always being tired. I just wanted you to know that you are not alone. The signatera test has given me some peace of mind for about a year, but now it is positive. So I am hoping for some clinical trial treatment before the mets recur again because we know it is already in my blood. Just found this out so waiting to see what the onco says...hes on vacation so I am left waiting...that alone should not be a thing..someone should be discussing my test results with me by now.

Thanks for all the responses. I enjoy reading about the experiences of others. It does inspire me and gives me hope. I have an appointment for another opinion/possible treatment options at MD Anderson in Houston in March. They only do in person appointments (I live in Indiana) so I will have to go there, but spring is a great time to go to Texas. I lived in Beaumont, TX, for about 5 years during Hurricane Harvey and the subsequent hurricane when I decided I needed to relocate to Indiana for better weather. I am able to enjoy all four seasons here which is fantastic for my state of mind. Before my last scheduled maintenance chemo, it was discovered that I had a lung infection so I was started on antibiotics and the chemo infusion was cancelled. I go in tomorrow for lab, oncology appointment AND infusion on the same day! So thankful for that change in schedule so that means only two days of appointments instead of three like it had been previously.

In answer to some questions above, I have had my tumor genotyped, and it is nothing that can benefit from targeted therapy as the microsatellite instability is low. I was told by the nurse at MD Anderson that their CT scan equipment is much more sensitive and can pick up things that others do not. He also told me that many times cancer is misdiagnosed (?) and it is actually some other type of disorder, virus or cellular disease. Not sure that is the case, so I will find out more in March. He also said there are other possible treatment options, so I'm hoping for positive news there.

I'm in a better state of mind today than I was when I wrote the previous update. I still feel like I'm in limbo when it comes to end of life planning. I don't feel it's urgent to get things in order completely, but it is in the back of my mind. I know many people who die in accidents that don't have any thoughts about their life ending, so in that way I do feel fortunate.

Thank you for your support and encouragement. Your strength and positive attitudes are definitely inspiring to me and hopefully to others at the same time.