Just diagnosed: Surgery not an option, looking for hope

Posted by vcsongradi @vcsongradi, Feb 8 10:11am

Went in for my first colonoscopy in December, F age 58. Had negative Cologuards for the last 4 or 5 years. My PCP gave me a FIT test in September which came back positive. Colonoscopy revealed a rectal mass (close to the sigmoid colon junction) she said was typical cancer presentation. Had some abdominal pain and went to ER. PET scan found mets to liver and both lungs, stage IV. Colorectal surgeon told me that surgery, "would not benefit me." Oncologist gave me 2 to 3 years prognosis, said treatment would be palliative and not curative, and surgery, "would never be an option." Started FOLFOX + Mvasi in January; just finished my 2nd round. CEA was initially 58, and is now 46, so that is good news I think. Don't really have a question, just looking for some hope from the stories of other people.

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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.

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Profile picture for nycmusic @nycmusic

@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 !

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@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 !

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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.

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Profile picture for cliffe75 @cliffe75

@vcsongradi
Hi I am colon cancer stage 3B. Just wondering if you have the molecular analysis of your tumor. (also called Genomic or Tumor Markers) Then you might be able to get Targeted Therapy. . i.e. the type of chemotherapy could be different based on which mutations they find in the specimen (either from biopsy or surgery). If you have KRAS G12C or D, there are specific drugs. Unfortunately, Targeted Therapy is not available for all mutations. If you are dMMR (deficient mismatch repair also know as Microsatellite Instability) then you could get immunotherapy. dMMR is less common, only about 5-15% of colorectal cancers. But certainly worth asking.

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@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 !

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Profile picture for vcsongradi @vcsongradi

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!

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@vcsongradi
Hi I am colon cancer stage 3B. Just wondering if you have the molecular analysis of your tumor. (also called Genomic or Tumor Markers) Then you might be able to get Targeted Therapy. . i.e. the type of chemotherapy could be different based on which mutations they find in the specimen (either from biopsy or surgery). If you have KRAS G12C or D, there are specific drugs. Unfortunately, Targeted Therapy is not available for all mutations. If you are dMMR (deficient mismatch repair also know as Microsatellite Instability) then you could get immunotherapy. dMMR is less common, only about 5-15% of colorectal cancers. But certainly worth asking.

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Hi, I am offering my thoughts. First, that is what the oncologists would say to surgery, not an option or let's see. I was diagnosed with stage IV colon cancer with large spread to peritoneum. After 11 rounds of FOLFOX, I was deemed stable and ready for cytoreduction surgery and HIPEC. Coming out of 12 hours surgery there was no evidence of disease left. Felt great, despite the challenges of post surgery recovery and later a much more dramatic surgery due to colon/small intestine rupture. Then 4 month later 2 metastases were found in my liver which after 4 rounds of FOLFIRI+avastin were ablated. I am now 2 months in with no sign of disease. Cancer life is a roller coaster, some really good days and some shitty. You have to hang in there, life is still good despite dr appt and pain. Your family loves you and they deserve to have you in their life. I go for walks in nature, I go meet friends, anything to make me feel normal. Please take care and wish you the best!

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So sorry you are going through all this…I was really freaked out when the surgeon said my tumor was too big to operate, as i really wanted rid of it pronto…but she said treatments can shrink tumors and make way for better and safer surgery…. So, i did immunotherapy 5x and the surgeon planned the operation because the meds had shrunk the tumor…turns out, the meds killed it and they found no cancer anywhere, thank heaven ! I’ve heard that some chemos can do something similar…whatever, the waiting time isn’t fun, but sometimes things turn out better over time than you could ever have imagined.best of luck !

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Please seek a second opinion. Give serious consideration towards going to Memorial Sloan Kettering in New York City. They have a team of experts that will collaborate and offer options. I was recently diagnosed with an extremely rare Appendiceal carcinoma and had a large tumor removed. My surgeon was Dr. Pappou who is a very skilled surgeon. Make an appointment with him. I had 5 hours of surgery on a Friday afternoon in August and went home Sunday afternoon. I am under the care of a Medical Oncologist now. Please, please do not give up.

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Vernon Zigler

Nobiletin (NOB) is a flavonoid derived from citrus peel
NOB was found to have anti-tumor efficacy. The present studies on the anti-tumor mechanism of NOB mainly focus on inhibiting the growth and proliferation of tumor cells, inducing accelerated apoptosis of tumor cells, inhibiting metastasis of tumor cells, inhibiting tumor angiogenesis, and regulating the tumor cell cycle and protein expression (Goh et al., 2019). NOB can inhibit human nasopharyngeal carcinoma cell growth and apoptosis through the PARP-2/SIRT1/AMP-activated protein kinase (AMPK) pathway (Zheng et al., 2019). NOB can regulate Src/FAK/STAT3 signaling, reduce VEGF production, and inhibit angiogenesis in breast cancer cells (Sp et al., 2017). Most recently, it has been shown that NOB can combine with chemotherapeutic drugs to enhance the sensitivity of chemotherapeutic drugs and play a synergistic anti-tumor effect. Li et al. (2019) investigated the efficacy of NOB on oxaliplatin using colorectal cancer cell lines.
They revealed that NOB increased the sensitivity of colorectal cancer cells to oxaliplatin chemotherapy through downregulation of the PI3K/protein kinase B (AKT)/mTOR pathway, and NOB promoted oxaliplatin-induced apoptosis in colorectal cancer cells.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2024.1354809/full

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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?

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