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Colorectal Cancer Alliance of Central Massachusetts
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Fighting colorectal cancer is not something you should go through alone. There are a lot of people out there other than the medical professionals who can help you with your care.

I am a colorectal cancer survivor. I had and still do have support from my oncology team which includes doctors,nurses,radiation therapy technicians,schedulers,and so on... However, sometimes this is not enough. In addition, while family and friends were the very root of my perseverance through each day, they are often too far removed from my
diagnosis to help me understand my condition.

As a survivor, I feel there is a need for patients to be patient advocates. Who better to help understand your situation better than one who has walked in the same shoes? We may have had a variation to the treatment, be a different age, gender, or nationality, but we can say we know what it truly feels like to sit through chemotherapy or several doses of radiation.

There were many times I could not explain what I was feeling and I knew the medical staff did not understand what I was saying. What if I had a language barrier? What if I was elderly and did not want to ask too many questions? What if I did not know what to ask? To have someone who might have felt that same pain,nausea,lack of energy may make the patient’s day go a little bit smoother.

The personal side effects to treatment can be embarrassing to some patients. Constipation,diarrhea,and discomfort in areas involved and surrounding radiation sites are just a few of the seemingly undignified conditions.Those of us who have been through this may have some positive resolutions to place the patient at ease. I am willing to put myself out there to help my fellow patients who have been diagnosed with colorectal cancer,but I cannot do it alone. Please,consider joining me to start a patient advocacy support program.

Maryellen Kayer
email ---

My journey into and surviving colon cancer.

I have always been a very healthy person. I try to exercise and eat low fat low cholesterol foods.

Three years before discovering I had colon cancer, I had a routine colonoscopy. The results were everything was fine, even though on occasion I had rectal bleeding. The bleeding was so occasional, I paid no attention to it, besides the colonoscopy showed no problems.

Move ahead two and a half years. I am again having occasional rectal bleeding but more frequently. Another symptom which I thought was unrelated was a back ache. The back ache on occasions was quit strong.

Because of my husbandʼs strong insistence, I again consulted a physician. He said he would have to take another colonoscopy for his reference. I was not sure my insurance would pay for it as it had been only three years. As it turned out because of the problem the insurance would pay. And, this decision turned out to be a lifsaver.

I indeed did have cancer. It was lodged in a crevice in the colon, very difficult to detect. It had invaded the wall of the colon. Lucky for me, it was caught before it broke through the wall. The physician who did the operation was able to remove twelve inches of my colon, plus surrounding lymph nodes. He said he was able to get it all. The tests showed that the surrounding lymph nodes had not been affected.

It has been a year now. I am doing fine and expect to continue to be fine.
From my personal experience I hope everyone will see how important it is to be checked. You never know. Just as in my case, it could save your life.

By Lucile Rickis

My experience with colon cancer has been a roller coaster ride and one that I wouldn't wish on anyone. In Sept. 05, I noticed some blood in my stools and after a week of observing this, I immediately called my doctor. My general practitioner sent me to , my gastroenterologist who performed my first colonoscopy and colorectal cancer was found. I cannot express the shock my husband and I were in upon hearing those words! That very afternoon, while still groggy from the anesthesia, I was sent to see a specialist in colon surgery. He advised me to see an oncologist for some chemo and radiation. I also had a PET scan which, thankfully came back normal. I was given 5 days of chemo simultaneously with 29 days of radiation to my hips and rectum. These days were tremendously painful and frightening as it upset my intestinal tract and gave me severe heartburn and 15 days of chronic diarrhea. I also suffered bleeding from both my rectum and vagina, but after a month, these symptoms subsided.

On Jan. 10, 2006 I went in for my first surgery to remove the cancer. It took approx. 41/2 hours and I awoke with an ileostomy, a spinal tap in my back, a drainage tube on my side and a catheter ( as well as the usual post surgery IV). Needless to say, it was a very frightening time for me as I was in the hospital for 12 days. My bladder had stopped working so I was sent home with a catheter . I then had to selfcath for approx. 2 months. Thankfully, my bladder returned to normal . Those first several days at home, I was in a constant state of shock and even afraid to sit for fear of the staples just inside me. It took many weeks for me to regain my strength and I remember the triumph I felt at being able to walk just two doors down my street and back. Adjusting to life with my ileostomy for the next four months was an emotional as well as physical ordeal. On May 2006, my sweet surgeon was able to reverse it and I thought all would be so much better but, to my shock, as my stools started moving down towards the area that had radiation, the burning was nothing less than horrific. This went on for many months but, thank God, the burning did go away. Then in Oct. of that same year, I had such trouble having any movements at all, that once again, my surgeon had to perform surgery, this time a sphincterotomy. After two years, the pain was all but gone but the emotional stress still remains due to my system's change. On most days, my bowels move anywhere from 5 or more times a day and because of this my system dictates where I go and how long I stay. I am also still, at this writing having my blood checked by my oncologist every 6 months and my results keep coming back normal and for that I am so very thankfu to God!

To anyone reading this, it is my sincere hope and prayer that for anyone finding themselves with this diagnosis, I urge you to not give up and to know that after all the hard stuff, there is light and hope and healing and joy at the other end.

Patty Allen
Boiling Springs, SC

Kathleen’s Story
Kathleen O'Beirne: Pregnant and battling rectal cancer

When Kathleen O'Beirne learned she was pregnant in 2004, both she and her husband Patrick, a pediatric and internal medicine resident at UMass Memorial, were elated. Married six years and settling into their Grafton home, the couple was eager to start a family - hopefully a very large one. But what began as a joyous event changed drastically some seven months into the pregnancy when Kathleen, then 29, learned she had rectal cancer.

The bleeding she had been experiencing was not from pregnancy-related hemorrhoids, first thought by her obstetrician. Kathleen then had a flexible
sigmoidoscopy, performed by Kanishka Bhattacharya, MD, a gastroenterologist at the Medical Center. A mass about 5 cm in diameter was found, something Dr. Bhattacharya was not expecting. A biopsy performed came back as rectal cancer. A second endoscopy, performed by Wahid Wassef, MD, director of endoscopy at the Medical Center, showed the cancer had invaded a nearby lymph node and was stage III. Kathleen was blown away. This was not supposed to happen to someone pregnant, not to a young person, not to someone without a strong familial tie to the disease.

Doctors sped up Kathleen's delivery, giving her steroids to grow the baby and inducing her at 35 weeks. In March 2005, Kathleen and Patrick welcomed Emma Elizabeth into the world. At 5 lbs., 10 oz., she was the model of health. But Kathleen had less than two weeks to nurse Emma; chemotherapy had to start as soon as possible and Steven Grossman, MD, PhD, her oncologist at the hospital, knew there could be no delays. A portable catheter was implanted into Kathleen's chest, and for nearly six weeks, chemotherapy was infused continuously through it while she underwent daily radiation treatments with cutting edge IMRT (intensity modulated radiation therapy), under the direction of T.J. FitzGerald, MD, chair of the Medical Center's Radiation Oncology Department. None of this kept her away from her infant. At home, visiting nurses checked regularly on Kathleen's progress. Overall, she had few side effects, but lost some hair from the chemotherapy, and she learned to hide her balding head under a baseball cap.

Surgery was the next battle to overcome. A nearly five-hour operation was performed and Kathleen's rectum was removed and replaced with an ileostomy bag that she would wear for eight months. A followup surgery reconfigured a new rectum, replacing the bag. But an additional six months of chemotherapy, every other week, was prescribed, again delivered from an outpatient setting. Again, Kathleen did very well, save for some tingling and numbness in her feet and hands.

Today Kathleen is thriving and being followed by Dr. Grossman and her multi-disciplinary team at the Center for Gastrointestinal Oncology at UMass Memorial. Saddened by the fact she can no longer bear children because of radiation side effects, she is exploring adoption options with Patrick.

"I received wonderful care at UMass Memorial," said Kathleen. "I never thought I would be a cancer patient, but I was, and the care I received there was the best."

Kathleen has now resumed working as a social worker for a local nursing home. She hopes that soon the catheter will be removed permanently from her chest, a sure sign it will not be needed anymore. "Like having a baby," she said, "cancer has been life-changing."

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