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Chemo or surgery: decision point, seeking perspectives
Hi friends,
On October 19, I had my first colonoscopy following symptoms of bright red blood in stools that had appeared over the summer. A tumor was found, later identified as a T3 rectal cancer, stage IIi, with no known lymph node involvement, about 6-7 cm above the anal verge.
I did 6 weeks of daily chemo /radiation treatment that ended on January 26. Two and half weeks later, I had an MRI which appeared to show a possible complete response, with no visible remaining tumor. A follow up endoscopy on March 10 however did find an ulcer of highly irregular cells that was identified in the first pathology report as high grade dysplasia, which my team at Penn Medicine advised needed to come out with LAR surgery. The medical oncologist explained that chemo was not a viable option because it would not address high grade dysplasia.
I consulted with an oncology surgeon at Fox Chase Cancer Center who sought a second read of the March 10 biopsy and another endoscopy to see if the ongoing effects of radiation had led to any further progress since the March 10 scope. The second read of the biopsy led to a diagnosis of intramucosal adenocarcinoma, which Fox Chase identifies as cancer; Penn Medicine says that in their terminology, high grade dysplasia (which is not cancer, but pre-cancer), is the same thing as intramucosal adenocarcinoma. The second scope of April 6 found that the ulcer was still there.
Both teams of doctors at Penn Medicine and Fox Chase are excellent and I am incredibly fortunate to have their care. The folks at Penn Medicine are compassionately clear that LAR surgery to remove most of the rectum and sigmoid colon and create a temporary ileostomy to be reversed later, is necessary. At Fox Chase, they agree that the standard of care is the surgery and that that would be the most advised next step.
They did however say that they could support a 3-month course of Folfox chemo to see if that could address the issue and lead to a complete clinical response. They do see the cells in the ulcer as cancer, they note that I was responsive to the earlier chemo/radiation treatment and that this could be a way to avoid the surgery. They estimate the chance of success via chemo to be 30-35%. They do note that the chemo has its own difficulties, potentially long-term in neuropathy which is a concern for me as a musician.
I know that no one can ultimately make this decision but me, but I would value the perspective and experiences of folks here to help in my consideration. The surgery is attractive for its relative simplicity in addressing the cancer. The short-term is very daunting to me, including the ileostomy, reversal and the challenges of adapting to a changed body. But the long-term prognosis seems good; the location of my tumor makes the doctors feel that while my body will be changed for the long-term, the function should be fairly close to normal and not restrict my life in any significant way.
The chemo, while holding the possibility of avoiding surgery, carries its risks and pushes the timeline back another 3 months while waiting to see if it will be effective. Chances are I will still need surgery and so would be beginning that whole process months from now rather than getting started and then of the road to recovery that much sooner.
The doctors have been great. My Fox Chase surgeon says that surgery is the cleanest route and would be his first recommendation, but that the chemo route could be successful and they could support that if my primary goal is to avoid surgery if at all possible.
Thanks for reading this long post and for the many shared experiences on this board that have helping me through this journey. Thank you for any thoughts you may have to help make this decision.
With appreciation,
Rich
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Hi Rich,
That’s a lot to consider. I can’t help you with your decision, but if it were me, I’d be making a list of pros & cons. Neither surgery or chemotherapy are without challenges. Very best wishes to you.
Warmest regards,
Amy
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3 ReactionsHi Rich,
I can speak to the neuropathy. After chemo over the years, my circulation is hands and feet is horrendous (really bad for me) in the cold. I am actually in the process of finding where to move so I will never deal with Midwest winters again, but also not interested in obscene summer heat. I had a temporary ileostomy bag for 3 months last fall and it is reversed now. I am very glad I did that. I still have intermittent incontinence (I'm also not cancer free), but I can be physically active and thrive as much as possible. Only you can decide if the chemo is worth a shot, but if in doubt, you can always have to after the surgery. But once you have chemo, you cannot unhave it. Most of us on this forum have had multiple surgeries and came out okay, and in some cases much better than before. I'm currently getting Keyruda once every 3 weeks and avastin once a week. Both tolerable.
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2 ReactionsHave any of the surgeons indicated they would at least attempt a bowel resection with the u errata ding if it isn’t possible, that they do the ileostomy? I have ulcerative colitis so have regular colonoscopies. I had one in 2019 that was unable to be completed because of a structure caused by a suspected cancerous tumor. They couldn’t get a great sample, but what they did get came back as high grade dysplasia. One surgeon didn’t look at that as cancerous, while two others did. I had a CT done the same day as colonoscopy and CT suggested possible metastasis. Two surgeons wanted to remove my whole colon with a temporary colostomy and the possibility of a j pouch. The third surgeon wanted to at least attempt to immediately resect. Ultimately, there was a lot more to deal with and they removed an ovary, fallopian tube, part of sigmoid, cecum and ileocecal valve and appendix. But they resected both areas successfully. I did have a few complications, but I had a colonoscopy on Monday and the anastomosis still looks good.
It was pretty important to me to maintain my active lifestyle and I was just traumatized by the possibility of a colostomy. I know that ultimately I would have handled it, but just mentally wasn’t at that space so I appreciated a surgeon who was willing to be conservative
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3 ReactionsDear Rich
I am in exactly the same situation that you find yourself in. And it is a difficult desicion.
Have you done any research on the use of Ivermectin ...???
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1 ReactionHi @thecattleman, I see that you are exploring the use of ivermectin for the treatment of colorectal cancer.
Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for prostate cancer.
Ivermectin combined with other chemotherapy drugs or targeted drugs is being studied in early clinical trials and shows promise in patients for whom conventional chemotherapy has not worked in some cancer types, including colorectal cancer. Current results from studies in test tubes (in vitro) indicate that ivermectin *might* be a new potential anticancer drug for treating colorectal cancer and other cancers. It has not yet been tested on humans.
IMPORTANT
It is NOT safe to take ivermectin that is commercially available. Please talk to your doctor before taking any over-the-counter medications or supplements that claim to fight or cure cancer.
Note Mayo Clinic Disclaimer (https://connect.mayoclinic.org/blog/about-connect/tab/disclaimer/)
All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.
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1 ReactionEvery two weeks I sit in a chair for two full days while chemo or God knows what is being pumped into my body. I have cancer and I am being told that Dostalimab is not suitable for me ... in spite of all the research that shows really good results...??? I am also being told that immunotherapy is also not suitable for my cancer....so only God knows what we as cancer patients are supposed to believe...
Hi
I have high grade dysplasia, located in 2 areas of my anal canal, is this the same as low stage 0 cancer
Rich - of course everyone has their own perspective at own situation. Having gone through surgery and 3 months FOLFOX I can tell you that neuropathy was very minor and completely resolved 3 months after chemo was completed. I suggest there is such a gray area between high grade dysplasia and cancer that they are really the same, and so if I was in relatively good shape and wanted to live a long time I would have surgery and chemo.
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1 ReactionStudy ask questions surgeons all they want to do is cut it's job security. I have been verbal fighting with surgeons as they just want to carve my body up They do not have to live with a modified body but we do, I have done 25 treatments of radiation and have 3 more of a total of 8 chemo treatments to go. 2 of the 3 spots of cancer are dead but 1 spot is still there. Chemo is a bitch Neuropathy yes loss of appetite lost 20 pounds which is o k just feel like crap what a delightful way to spend the Summer with covers over one head not wanting to take part in the world. Anti nausea drugs no help just waiting to get thru these last 3 treatments. Then we wait & repeat MRI in Oct to see if we got it all. At this point life is a bitch & assume it is also a bitch for anybody doing chemo
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1 ReactionI’m sorry to read the difficult decision you are needing to make. All I can provide is my experience, in case it could be of assistance.
I was diagnosed with stage 4 appendix cancer in 2021 and I’ve been 2 years NED through surgeries (2) plus chemo/immunotherapy.
The treatment for appendix cancer is the same as that for colon cancer.
As far as the chemo is concerned, I chose 6 months of fortnightly Folfiri + Avastin with the 46 hour take home pump over Folfox to reduce the prospect of neuropathy.
Folfox affects the digestive system more. Apparently (but you would need to check with your medical team) Folfox and Folfiri are of similar efficacy.
It might be that Folfiri is worth considering with your team, I had a very manageable time with Folfiri + Avastin. Yes side effects did happen (like diarrhoea) but we got on top of them and I have had no serious lingering side effects. (I lost my gall bladder and some of my colon so I just need to manage my diet - soluble fibre in particular - to keep my digestive system working well)
All the best with making the decision according to what feels right for you. It’s the best any of us can do.
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