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Cancer: Colon Message Board


Cancer: Colon Board Index


Unfortunately, there are many uneducated doctors when it comes to screening for disease and especially hereditary diseases.

We have cancer on both sides of the family, which also, in a very strange way kept me from being diagnosed and developing Stage III cancer, as a result. Every action is a reaction...and boy, the past few years, the reactions were very interesting, at best.

We've discussed the side effects of cancer, but not the side effects which come about as a result of human action, inaction or reaction.

This is the first Christmas, in several years, to which I've looked forward. I attribute it to hope. There is something about hope and the genuine quality it brings into our lives, which erases and diminishes the pain and fear of the unknown. It provides strength and warmth from the cold. Hope is a very powerful medicine. In fact, I am downright excited about Christmas this year. I cannot wait for Christmas Eve, to put on my makeup, put on my wig and go to Midnight Mass. It is so very beautiful.

Anyway, nothing is going to get me down. Not even the unethical, contracted attorneys for the HMO to which I belong, who on Monday and four days before Christmas, dumped pounds of paperwork to be completed, on my front doorstep. This was even before an arbitrator was selected for the arbitration of our matter in which I am acting in pro per.

Why arbitration? Late diagnosis and refusal to give me a colonoscopy within the timelines as dictated for those with HNPCC and fast growing cancers. The same reasons I am advocating for legislation that requires physicians to take detailed family histories from patients, so patients can be referred for genetic testing.

In 1997, my father died following sustaining numerous cancers, including renal cancer, skin cancer, colon polyps, esopheoghal cancer and bone cancer. He feared it was hereditary and with each cancer he got after beating the last one, those fears were echoed loud and clear as he warned his father had stomach cancer (quite possibly colon) his grandmother had an unknown cancer and his sister had sustained colon cancer. In 2001, my brother sustained colon cancer. This family history met the Amersterdam II criteria for HNPCC diagnosis and referral for genetic testing. It also met the criteria for enhanced testing and surveillance for colon cancer. That was something my doctors did not act upon.

In late 2001, I sustained some rectal bleeding and tried to get a colonoscopy. My GP felt what he thought was a polyp and referred me to testing. I was told that tests were scheduled out six months. I called the Office of the CEO and they managed to get me a test. It was negative.

The doctor did not take a comprehensive family history. During the brief telephone conversation with me, prior to having the colonoscopy, I told him my brother had just been diagnosed with colon cancer and my whole family had been wiped out by cancer. The family history the gastronterologist wrote was something to the effect of: "She has a history of cancer in her family and her brother has colon cancer." Two days ago, I got a letter from the doctor's Chief of Staff which alluded the aforementioned was within the standard of care for a "family history." The test was negative and I was to take another in five years.

My family and I then became involved within a study by a major research center for siblings of those with colon cancer. They were seeking rogue genes. My HMO took my blood and shipped my dna sample to the study.

Less than a few years later, prior to 2004, I received a call from someone in the study who was studying the diet of the individuals involved with colon cancer. I was told I should have a colonoscopy every two to three years.

In 2004, I went to my doctor and took along cat scans my husband and I both had taken since my doctor was adverse to testing for basically anything. He didn't really want to review it, stating he didn't put much credibility into such things. He referred us for laboratory testing and at my insistence, for an X-Ray, since I had a white patchy substance in my chest. I asked for a colonoscopy and he refused. He refused to physically examine us. He stated he was a "body psychic" and I didn't need examination for him to know I was healthy. He stated my problem was anger and if I resolved that, I would be just fine. He also assured me by stating tumors take more than five years to grow so I had nothing to worry about.

Today, he not only still works for the HMO but has a website advertising his own side business of metaphysical healing at $120 an hour. His Chief of Staff stated the gastroenterological policies of the HMO were colonoscopies were to be given every ten years. A lot of us here on these boards would no longer be on this Earth if physicians followed her policies and her definition of "standard of care."

My husband and I left his office, feeling like we had previously entered the twilight zone. The only convincing and reassuring thing we heard was it took five years for tumors to grow, so I wasn't worried. I didn't know then that the tumors in individuals with HNPCC grew very rapidly, thus the probable reason I was advised to be surveilled more carefully.

I began to grow tired a lot and had problems with indigestion. My bowel movements were sporadic and sometimes I had an odor I can't describe. I began to work less and less and spent more time resting as I didn't quite have quite the stamina I previously had and it was decreasing. I had difficulty walking more than a few blocks and definitely couldn't walk uphill.

In 2007, the five year "statute of limitations" was up and in June of 2007, my doctor prescribed a colonoscopy. By September, nobody had called me to schedule an appointment. We were five years and nine months out at this time. So, I called them. They stated they were behind in appointments and didn't know when they would be able to schedule me. I told them I was at risk. They refused to listen and insisted I was not. I called the CEO again. He had changed his number. I spoke to supervisors. I cried and begged for a test. I tried to get one at another facility. Nobody would listen. Finally, I got scheduled for a test on November 30th, months later. Altogether, it was five years and almost eleven months from the date of my last test. At that time, I had one large tumor and two flat tumors.

I underwent a subtotal colectomy and it was found the cancer had metastacized into a lymph node, making it Stage 3 Colon Cancer. It took about two months to recover from the two surgeries (I had complications which were no fault of anyone but my own body constitution.) as I had serious anemia and then we focused on chemotherapy. It was grueling, but better than the alternative. I believe every side effect one could get, I got. I was and still am prepared to change my name to Murphy. In fact, my husband kiddingly calls me that.

I've been off chemotherapy for almost three months and am recovering from the side effects. Some may never go away, but I am alive and that is all that counts right now.

Now, the HMO is scrambling and I am devastated that persons in positions of trust, such as Chiefs of Staff would betray those positions of trust and minimize standards of care for those who are at high risk for cancer in order to "dump an arbitration." It is very hard to trust doctors who cover up and lie and who live in alternative realities. Fortunately, I NOW have a team of the best in the HMO who are treating me now and I love them and am grateful for their care. It took a year to find them all but now that I have them, I am so grateful. Even this new diagnosis of flipping diabetes isn't getting me down....

Its a shame, however, my team of doctors have such inept supervision. My GP is wonderful, my gynecologist is terrific, my surgeon is the very best, my oncologist is a wonderful,compassionate, tenacious bulldog, my geneticist is upbeat and terrific and my new gasteronterologist is thorough, sweet and compassionate. All are educated in respsect to HNPCC and its effects.

I spent the Christmas season last year misty eyed, finalizing my affairs and preparing for my surgery. Memories of Christmas' past flashed through my mind as I thought of my personal property and divvied it up between those I love and whom I may be leaving behind. It was a soulful time.

Following that, I was in the hospital almost a month with complications, including requiring assisted breathing. I wasn't ready to leave this world yet, that's for certain. My mind waved in and out with visions of the beautiful eagles soaring above our ranch, my grandchildren laughing and of a river flowing through our property which I love very much. I had visions of Christmases and Thanksgivings and Easters and other times of love and hope. I had visions of my father and mother and my grandfathers and grandmothers urging me to make it through.

I am very excited about this Christmas as I view it to be a gift and I am looking very forward to it. Excited, I have delivered the gifts to the doctors and nurses who saved my life and had my Christmas cards ready to go three weeks ago. My baking was done last weekend and the shopping completed a month ago. The work is done and hubby and I take walks at night, smelling the fires coming from homes, the pine trees and the decorated and beautifully lit homes. We take time to chat with our neighbors and our friends and have had time to hop into a little pub and drink a toddy or two...something I haven't done for years and something I probably won't doing much of in the future as soon as I pick up my glucose meter.

I have this little compartmentalized box, where I am intending to put the flipping three plus pounds of documents to be answered from the very rude attorneys who tried to ruin my holiday (pretty lousy strategy...only makes me more determined to do everything I am doing) I have a desire to put it elsewhere, but I believe the county jail's Christmas tree is not as lovely as mine and they won't be serving homemade candy and pastries.

I've made my phone call to the HMO's CEO's office (after tracking down a new number) and requested they dump the attorneys and so now, after shedding a few tears and the immediate business resolved, I'm officially celebrating Christmas....it will be the best ever, especially after a very difficult year. In fact, I'm not only going to Midnight Mass but I'm going to run for the first time in three years.

I am so blessed to be alive and if this is to be what is to be the end of my life, it and the New Year will be filled with joy and activity that will count and assist generations to come so they won't have to go through what so many of us do, when we need to be diagnosed.

Merry Christmas everyone! Its time to celebrate life! And Happy New Year, because some things are going to change...for the better of all.





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