I am so overwhelmed that I hardly know what to say. I am writing this with tears running down my face.
Like so many of you I was misdiagnosed for about 3 years and was only diagnosed because I demanded that something be done with tests. When I did have a colonoscopy the tumor was so large that they could not get by it with the scope. I was diagnosed with stage IIIc Colon Cancer 3/50 possitive nodes one extracapsular rupture. I had a colon resection, oxilaplatin, leucovorin, 5fu for 6 months and have just celebrated two years in august of cancer free. I was luck to have an oncologist on the cutting edge who persued new and aggressive treatments. The regimine was not yet approved by the FDA and a friend in a neighboring city was not able to get it without going thru three oncologists. After chemo I had two additional abdominal surgeries due to adhesions and internal hernias which cut off the bowel. I choose to have a hysterectomy because I had been told that there is a link between colon, breast and ovarian cancer. Although there are good methods to monitor for breast cancer, ovarian cancer is difficult to catch. Nothing is where it use to be. I am 1 year out from any surgeries and 2 years since diagnosis. I continue to have pain on my lower left side in the general area of the reanistamosis. The CT scans and PET scans have come back clear and at best they think it is scar tissue. Does anyone else have continued abdominal pain?
I am also struggling with extremely dry eyes. I cannot sleep more than a few hours with out waking up and putting drops in my eyes because of the pain from no tears. During chemo I had a terrible case of PPE, my hands and feet would peal until they were purple like a burn victim and my eyes were horribly dry. My skin finally got back to normal but my eyes only mildly improved. Has anyone else had this or found something to help? I have tried Restasis eyedrops, vitamin E suppliments and Flax seed oil but nothing has made a marked difference.
When I was going thru this I could not find support for young people with Colon Cancer.
I went to a support group once but was 25 to 30 years younger than the rest of the group and they were not a possitive energy for me to be around. Thankfully I have a wonderful, supportive Husband, friends and Church which helped me keep my spirits up.
My husband found this site for me (isn't he great). The information exchange is great. Thanks for being the voice of young people surviving colon cancer.