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Colon Cancer Alliance
Voices of Rhode Island Chapter
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I was first diagnosed with colon cancer in March of 2003. That resulted in my first operation and 6 months of chemo. In August of 2004 the doctor found that a cancerous cyst appeared in my pelvic area. Another operation was scheduled, but before that took place a tumor was found on the bone of my left arm. So as a result, there was no operation and radiation and chemo was ordered instead. It was not too long before the pain was gone from my arm and the tumor did not show up on x-rays. But the chemo continued on until April of 2007. That is when the doctors decided to successfully remove the cyst. For a time I was cancer free. But that did not last. In March of 2010 a cancerous spot was detected on the outside of my colon. Therefore a third operation was called for to remove a small section of my colon. As of May 2013 I am in remission.
In October 1999 I went to the hospital for what I had hoped would be an uneventful colonoscopy. Unfortunately, my oncologist had bad news for me as he said "you had four cancerous polyps which we removed, you have a 5 and one half centimeter tumor, I'm sorry, you have colon cancer; we are keeping you overnight, doing the surgery in the morning, you will have eight weeks to recover from the surgery and six months of chemotherapy." In a split second my life turned upside down. But in March 2000 I was hospitalized again with not only the stage 3 colon cancer but also with a bladder infection and severe dehydration. After six days I was much better and back at home. In all I received twenty treatments of 5FU chemotherapy and in July 2000 my oncologist this time called with good news as he said that no evidence of cancer had been detected, I was cancer-free. He also said "you are nothing short of a walking miracle."
When I was first diagnosed I had called the American Cancer Society seeking a local colon cancer support group and was dismayed to learn the nearest to Rhode Island was in Texas. However, a friend showed me an article in the city paper about Barbara Joyce who was asking for other colon cancer survivors to contact her regarding beginning such an organization. I called Barbara and joined the group, Colon Cancer Alliance/Voices of Rhode Island. Colon Cancer Alliance (CCA) became an invaluable part of my life as I could get all my questions answered and have my fears allayed through the wonderful people there. I was honored to be part of such a fine non-profit corporation.
During my illness I received great support from my daughter, son, brother and his wife as well as from aunts, uncles, cousins, friends and acquaintances. What I could never have known then was that ten years later I would be supporting my brother in his stage four colon cancer fight for his life. Once again due to the assistance of CCA/Voices of Rhode Island we were fortunate to have him for an additional three and a half years. Annually, Voices of Rhode Island holds its annual 5k walk/run. My proudest moment of being a member of Voices of RI was at one of our annual walks when my brother embraced me and said "I am proud of you."
In my brother's memory I am more eager than ever to help inform the public that colon cancer is "preventable, treatable and beatable."
I was diagnosed in April 2006 with Stage IV colon cancer at 42 years old. My sons at the time were 21, 19 and 14. In January 2006, I had some intermittent pains in my right side that would last about 30 seconds. Soon the time between pains and the duration/intensity of the pain increased. My mom and sister literally dragged me to the doctor when I doubled over in front of them. I thought it was either my gallbladder or appendices. In hindsight - PAIN is always a symptom. I was given a CAT scan and sent immediately to the hospital since there was so much 'infection' no one could read the scan. It was late in the evening and the on call radiologist had left for the night. A well-known surgeon read my results and explained to my husband and I that I had diverticulitis and it was basically an 'oil spill' that needed to be cleaned up with antibiotics. I spent 5 days in the hospital on a liquid diet and antibiotics. The well-known surgeon visited me every day. I was sent home still on a liquid diet and antibiotics. I rebounded and felt great - began exercising and went back to work. The well-known surgeon suggested I book an appointment with him and asked that I get another CAT scan. I followed his instructions rather reluctantly rationalizing that I felt fine and I didn't have the time for all this follow up. Well, the CAT came back with some 'narrowing in the colon'. The well-known surgeon said he wanted me to go for a colonoscopy. Now, I was even more frustrated. I felt just fine. The well-known surgeon did my colonoscopy. He spoke to my husband and told him - "she is almost 100 percent blocked". He tried a pediatric scope and biopsied the blockage (mass in my colon). Either way he said it had to come out- cancerous or not. I was immediately sent for a barium enema. It wasn't until then that I felt my world tumbling down. I went home and googled all the buzz words: colon, narrow colon, blocked colon... I read and researched and read some more. I prepared myself for the worst case scenario..Stage IV Colon Cancer. But I didn't have any symptoms. Maybe the narrow stool - "like pencils" but no massive blood, no weight loss - nothing typical. As the days passed to our appointment with the well-known surgeon - to get the results - I did start to notice a black, tar like substance on my stool.
It was Thursday at 5pm. Last appointment of the day - everyone was gone. The well-known surgeon sat my husband and me down in a small room and gently broke the news to us. The tumor is cancerous and must come out immediately. He said we can get a second opinion but my pre op testing is scheduled for the morning and surgery for Monday. The well-known surgeon was incredibly compassionate. This was hurting him as much as us. He told me you are either an incredibly strong woman or you are going to get in the car and fall apart. Well I got in the car, dug so deep into my soul, and thought I will not die and leave my husband or my family. This is not the plan. I immediately thought of my Dad, whom I lost 1.5 years prior to Parkinson's disease. He always got so excited about new things he could hardly contain himself. I thought Dad - I know Heaven is wonderful and you want me to see it too - but not now Dad
My name is Doug Kraus. I was born 15 July, 1950. I want to say my story began with my first "procedure", my doctor suggested it was time. I had a sigmoidoscopy when I turn 50. They weren't doing colonoscopies commonly yet in 2000.
Sometime around age 55 I began to feel like I was finally getting older. I had just started to feel like I had to slow down. This prompted my joining the local "Y" and I started working out. I started running in any local 5k fundraisers. I didn't feel bad at all when I was able to do it 33 minutes. My goal was to try and get to 30 minutes; I just couldn't seem to get there.
At age 56, I had an annual checkup and said I just couldn't seem to break the 30 minute mark. Well I had my "finger exam" and given a referral to have a colonoscopy. Like everyone else I put it off. No one likes the prep or the thought of videotaping your rear.
At age 57, someone in the office had had a colonoscopy where they found numerous polyps. He was my age. We all talked about how lucky he was to have had them found early. It prompted all us to go decide we all would go ahead and get ours done.
Wayne and I were the oldest and as it turned out we saw each other in the hospital. He was leaving at about 10 and I was arriving. It was mid week late February of 2007. I remember some consciousness and hearing someone say I was being held over for a CT scan. The next thing I remember was waking up and my gastroenterologist telling me he wanted to see me in his office on Friday. He didn't need to tell me to bring my wife.
On Friday I got the news. The doctor had his nurse call his friend a surgeon at RI Hospital. I had an appointment for the next week. I was scheduled for another more "in depth" colonoscopy. I remember him telling me, a year from now you won't remember much of 2007 and it will all just a dream.
I remember joking with staff I didn't need any markings on me indicating my left from my right. At the time RIH had had 2 such mishaps. The very proper 2nd generation Italian surgeon a little older then I just smiled. Typical surgeon I said to myself and later commented this to some nurse. I was told he was best to have on my side. Later I came to recognize I really did like him. Immediately after my procedure he came to see me with an appointment to see his associate, The next week I saw the chemo oncologist. I was diagnosed Stage III- type 1, where they were not sure if the cancer had spread to any lymph nodes. We discussed options. One of them was a clinical trial, "very aggressive" I was given a lot of encouragement toward recovering. We made the decision on the spot to go with it. He made another appointment for me see his associate, a radiation oncologist.
It was then the sense of urgency struck me and I really didn't understand the diagnosis and staging. I looked it up online. Here you I might say the problem with looking these things up.
My husband Keith
My husband Keith and I were expecting 2008 to be our happiest year together ... our son was born in April that year. We were beyond happy and felt we had everything now. Just five short months later Keith was diagnosed with stage 4 colon cancer. Our world did a complete turnaround almost overnight. Keith had been a very healthy, active man his whole life. Although he was in his late 40's, he had no health problems. Just after our son, Jake, was born my husband had some digestive issues and discomfort. He was told twice over those next few months that it was irritable bowel syndrome. In September 08' we requested a colonoscopy to see what was really happening. There was a huge blockage in his ascending colon that needed immediate attention. Ten days later the surgery took place and Keith had about 16 inches of his colon removed. The doctor felt fairly confident that he had removed the entire tumor and Keith's liver, etc looked okay. Keith went through six months of "preventative" chemotherapy to hopefully kill off any cancerous cells. When our son turned one yr old, Keith went for follow up scans and it showed that he now had cancer in his liver and in his lungs. He underwent intensive chemo during the next 6-8 months, as well as other procedures aimed directly at killing off the liver cancer cells. None of this was successful. In November 2009 we were told that there were no other options available.
We were totally devastated. We went to Dana Farber in Boston and Keith took part in a clinical trial drug. Unfortunately this also was not helpful. By early May 2010 our doctors recommended hospice for Keith. I kept him home with me and took care of his needs until he passed away in my arms later that month. No one in either of our families had ever been diagnosed with cancer of any type. I never for a minute thought colon cancer would have been his diagnosis. Since my husband's death, I have become involved with the RI Colon Cancer Alliance. It truly is a silent killer and it does not discriminate by age or sex. Even Keith's primary care physician didn't suspect colon cancer and didn't order the colonoscopy until we urged it. My husband died when he was just 50 yrs old. People need to be educated about this terrible disease. I hope that by becoming involved with awareness and fundraising activities, other families can be spared the loss and heartache that our family has endured.
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