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Post-surgical issues after colorectal cancer

A fellow caregiver asked...

Several years ago I had colorectal cancer and had several months of chemo and radiation. I have a permanent colostomy and my rectal area sealed. (Radical surgery and radiation damage left a vaginal to rectum area gap and lack of pelvic support. I am ignored, passed from doctor to doctor, with no solution. Like being passed off, nobody doing anything ...Except passing me off to their "associates" who then treat me the same ...) I've had severe rectal pain, pelvic,urinary, leg and back pain. Nobody lists the symptoms of recurring rectal cancer after the area sealed (no rectal bleeding can be detected.). Can you still get hemorrhoids? I have like pulsating, painful spasms in the rectum, pelvic, and lower abdomen. My last CEAs were 9, 10, then 10.? 2 surgeons said I had cancer again. I had a pet scan, MRI, CT scan. They said I "didn't light up", not even the lymph nodes. Can somebody please help me and other former cancer patients with colostomies with these very embarrassing answers? Rectal bleeding is NOT a symptom after a permanent colostomy! (A back X-ray did show a degenerative joint & bone disease. Arthritis? ) Thank you so much for your help. I am so being ignored, and didn't realize there is so much ignorance in the health care business: they can't answer my questions. The pain is very real. There is progressing disability to everyday functions. I also have cardio-pulmonary issues and diabetes. (Also L. adrenal gland tumor:ignored.) Thank you for your assistance.

Expert Answer

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

Dear Anonymous, You've got quite a lot going on right now.

As you know, I'm not a physician, but I asked a member of my Medical Advisory Board and Board-certified oncologist to help answer you. I do think you should also ask the oncologist with Caring.com for more information, but here's what we talked about that I hope will help you:

First, you need some better pain management. You would benefit from a referral to a pain management specialist, who would review what your current regiment is now and give you recommendations for improvements.

Secondly, you cannot get hemorrhoids after removal of the rectum and anus (like the type of surgery you had).

Thirdly, this type of cancer can recur locally in the pelvis, which may be difficult to see on the scans, and therefore difficult to diagnose. With those symptoms and a rising CEA, it seems like the opinion of the other two surgeons could be correct; have you discussed the possibility of a biopsy of any abnormalities of the pelvis with your current surgeon/oncologist?

Lastly, adrenal tumors, incidentally discovered, are relatively common, and almost always benign. Most surgeons would just watch this on serial XRays/CTs for evidence of change because they are benign and usually won't change. It's more important that you focus on the pelvic pain and potential for recurrent cancer.

May you get some relief from your suffering, BBD