Just diagnosed: Surgery not an option, looking for hope

Sorry to hear about your case. You should try options, I'm sure you would have done that already. Were you diagnosed from CT scan in ER with abdominal pain or colonscopy from FIT test? Dont think they do PET scan in ER, do they?

@vcsongradi hi did they ever offer debulking surgery? What kind of cancer do you have? Have you taken advantage of palliative dr and social worker usually offered ? I talk freely with social worker that comes during my chemo. And make regular appointments with palliative dr to ask questions and talk about side effects. This is really helpful. I have had anxiety disorder for 45 yrs. And seem to be ok with my anxiety medicine. Do you have someone to talk to?

I have adenocarcenoma. Started in appendix. Moved to omentum matastesized aggressively. I started folfox and avastin regimen every 2 weeks. My CEA started at 20 and now after 9chemos it is 5. My dr Sid cea is more accurate than ctscan that can be vague. My dr said 2 yrs in the beginning. Grade 4 colorectal cancer. I am now hopeful for debulking surgery after 12 treatments. Very iffy. New ctscan tomorrow. S long as the cea keeps going down chemo is killing cancer. Be hopeful. Every person is unique and miracles happen.

Hello, All -- cancer is considered stable as of the CT in June, so was switched to maintenance chemo and currently the cancer remains stable. Latest CEA was 2.6. I ended up switching oncologists because I wanted to move my oncologist appointments to every 4 weeks instead of every 2 weeks, and she wasn't comfortable with that. My new oncologist is just fine with every 4 weeks as long as the cancer remains stable. However, I'm feeling burned out. I am glad that the cancer is stable, however, I'm still getting infusions and 46 hour 5-FU ball every 2 weeks. Still no mention of surgery. Oncologist says that the chances are high of cancer returning to growth and spreading within 1 to 2 years, then will try a different chemo (FOLFIRI I think he said) with fewer side effects than FOLFOX. I'm having a hard time accepting that I will have to continue treatment (either maintenance or another chemo) every 2 weeks for the rest of my life. The rest of my life! I feel trapped at times. I feel like I can't "breathe" at times. I find that my mental health is becoming more affected lately. I suppose I can just stop any and all treatment at any time, and to do that at this point I think wouldn't be a good idea since the cancer has responded positively to the treatment. I guess I'm not so sure I will continue with another type of chemo if it starts growing or spreading again. I'm not getting "rewarded" in a very satisfying way now that the cancer is stable because I still have to go to all these damn appointments. The infusion center is fighting me about getting lab/oncology visit/infusion all on the same day which would shorten my appointments to 3 days per treatment week instead of 4 days. I should be feeling glad that my cancer is stable instead of being more irritable and frustrated that nothing on the outside of my body has changed.

Hello everyone! Thank you for the encouragement, prayers and positive stories. I continue to improve! My last CEA on May 20 was 6.4, and I will begin chemo round 10 on Monday. My hair has been thinning which isn't fun, but it is a side effect so I deal with it. I have been having neuropathy in my fingers (numbness), so my oncologist adjusted the dosage of Oxaliplatin, and because of increased fatigue she stopped the 5-FU bolus that the nurses give before attaching the ball. I did finally get an answer to why surgery was not an option initially: it was 1) because of the metastasis to liver and both lungs, and 2) I would have to wait 6 to 8 weeks following surgery before starting chemo and they wanted to start chemo right away to stop the spread. My second opinion rectal cancer oncologist located in Moffitt Cancer Center in Tampa, FL, agreed with the plan that I'm currently on. My oncologist here locally did talk about maintenance chemo starting possibly in July after 12 rounds of chemo, and my next CT scan to see exactly how the tumor and mets are measuring. Keep praying and offering encouragement! Sending love and appreciation to all of you!

You are remarkably inspiring. I will be praying for you and your son everyday. Keep your spirit alive.

Make those last years count but you know what I've herd people say they have 2 years to live and live to be 80 you should get a different opinion or do chemo they can't just leave it that's not good

Just completed 7th infusion today, chemo ball until Thursday. CT on 4/7 revealed that the primary rectal tumor and all met spots have shrunk. CEA 8.7. Oncologist said that this is great news, and it is possible to have complete response by the repeat CT in July. She said if that's the case, we will switch to maintenance chemo every 3 weeks. I am feeling better overall. I don't know if immunotherapy is an option. I may revisit surgery option if the rectal tumor is small enough in July. I may also look into a clinical trial if the response isn't complete. I don't know my options just yet. How is everyone doing?

My husband was diagnosed with stage 4 colon cancer almost 4 years ago. He was also took it was inoperable.
I decided at that point to take my husbands into my own hands. With tons of research etc. I discovered the following: I turned down chemo etc. knowing it would kill my husband faster than the cancer, second I discovered the FDA approved Keytruda (immunotherapy) for colon cancer that was a particular type of colon cancer cell usually found from the tumor on the right side of the colon...however, since then they have approved immunotherapy for all colon cancer. So, I demanded genomic/genetic testing and actually found out immunotherapy was the best treatment at that point. I refuse to settle for chemo treatments. I also demanded them to remove the tumor because tumors continue shedding cells. He started his immunotherapy treatment, then he had his tumor removed. They will not operate if you are on chemo because you need at least 6 to 8 weeks after surgery with no treatment. On immunotherapy you can continue treatment even after surgery.
It was been positive and so far he is doing ok. I also have him on a vitamins routine that has help keep his blood levels almost normal. My only advice is to ask tons of questions, call Envita medical center in PHX,.....I learned tons from them because they aren't controlled by the insurance/pharma companies. I talked with them and learned what I should be asking for etc. We can send them your records for review. I also talked with the Williams Immunotherapy Institute which is one of the institutions that treat cancer only with immunotherapy. Honestly, you really need to do your research and don't stop ...it changes all the time. I am now watching Car-T treatments.....advance immunotherapy treatment....you will find it interesting. My thoughts are with everyone....it's not an easy journey.

Hi Vcsongradi!

Hope is a great word and I believe in the power of prayer and being positive! There is always hope. I hear no surgery and I think what if everything shrinks? I am sure at that time they could look into it. Have you gotten more than one opinion? I could not handle the FOLFOX when I was stage 3c, I was allergic to the oxaliplatin. So when it came back in an unexpected place, upping me to stage 4 after 8 months of freedom from chemo, they now have me on Folfiri. The side effects of the mouth sores are awful, but when I think of the time its buying me to be with my son it is worth everything! I think of Job in the bible and how much he endured and think…. At least its not that bad lol. I was told that I may have a similar timeframe… it was said that if my son, who is 17 and heading to college this fall, accelerates his courses and doesn’t take summers off that I might see him graduate. So that is 2-3 years…. For 4 year degree. I don’t accept that. I am determined to make it to his graduation! I am singing and cracking jokes… anything to stay positive. I have a very aggressive colon cancer that was on the right side which is considerably worse than the left. I have spoken to 2 people, one female one male, who have had this and the male is now 75 and has made it 25 years. The female is my age (48) and is 3 years in remission. We can do this!!!!!! We can be that percentage that does it! Keep your chin up, you are strong! I will pray for you and your hope! ❤️