My dad had his first operation at Carraway Methodist Hospital in Birmingham Alabama. They removed his rectum and he had a permanent colostomy, (A colostomy is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the anterior abdominal wall and suturing it into place. This opening, in conjunction with the attached stoma appliance, provides an alternative channel for feces to leave the body. It may be reversible or irreversible depending on the circumstances).
My dad did well with this new lifestyle. He survived until his 2nd diagnoses in January of 1992 when he was diagnosed with the cancer coming back in the small intestine, by the time they realized it the cancer had already spread to the lungs. He went through radiation treatments which only slowed it down for a few months. He passed away November 20, 1992 at the age of 55.
During this time in 1984 while I was pregnant with my second son Daniel I began to have problems with my bottom. The doctor told me I had hemorrhoids and treated it as such. After his birth I went back to work and just lived with the problems. In the early part of May 1987 I began to have more difficulties. One occasion when I went to the restroom something came out and it was still attached to my inside, it was bleeding. My husband rushed me to the local ER. The doctor on call said it looked like a polyp, I already knew what this word meant. He gave me a don't care shot and pushed it back in. I went in the next week to have a colon scope. The doctor confirmed it was a polyp.
I made an appointment with my dad's doctor at Carraway the next week. He told me I had to have my large intestine removed (colectomy) because there were thousands of polyps ranging from the size of a match head to a golf ball size. I went into the hospital on June 5, 1987 to have the surgery. I was 23 years old.
It took me six months to adjust to my new body functions. I went every three to six months to have the polyps burned out of my rectum to keep them from turning into cancer.
In May 1998 on one of my visits to the doctor they discovered that I had a rather large polyp which they could not take care of in the office. I went in the next day for outpatient surgery and woke up four days later to learn that the polyp actually was cancerous. The only thing that saved me was the cancer had not broken through the last wall of the polyp. The doctor said it was because I came for my checkups as scheduled.
In 2001 when I last seen my regular doctor and he told me he was retiring. A new doctor was taken his place. He had studied a more in depth surgery that would prevent me from having cancer again. I seen the doctor and after he explained that he would perform a J-Pouch.
Stage 1:
The lining of the rectum, but leaves the rectal muscle intact. A reservoir or "pouch" is made out of small intestine and then is connected to the anus. Next, a temporary ileostomy is made. An ileostomy is a surgically created opening between the small bowel and the skin of the abdomen through which stool and gas are passed. This temporary ileostomy diverts the stool; protecting the reservoir (pouch)while it heals.
Stage II:
The second surgery (usually done 2-3 months after the first) "takes down" or removes the ileostomy and reconnects the bowel. The pouch now becomes functional so that waste passes into the pouch, where it is stored. When an "urge" is felt, the stool can be passed through the anus, out of the body.Of course I was so ready to not have to be scoped every three to six months so I decided to have the surgery. It was a relief after all was done and I was healed.
This wonderful surgery was short lived. I will continue with this in just a bit.
The diagnoses for my younger brother Lamar came when he turned 21. He too followed the same regimen as me from start to finish. He had his surgery in 2003 for the J-Pouch. We both thought we were free from the worry of colon cancer.
We were never told that this was a severe and rare hereditary disease. We had two older siblings one brother and sister, neither of them had been stricken with this disease.
The Disease Reaches Farther Into Our Family Roots:
I had he and our oldest son Ray scoped when they were 16 and 18. The doctor said they both were clear and no polyps were found. We breathed a sign of relief.
On June 4, 2005 our youngest son Daniel turned 19 years old. I noticed he had began to lose weight around the age of 18. I just thought he was trimming up for adult hood.
Daniel had gone on a little mini vacation to celebrate his graduating school. When he returned home he told me his stomach was hurting around his belly button. He had been throwing up and not feeling good. I immediately called our family physician and he told me to bring Daniel in the next day. The doctor then set up a colon scope with a surgeon at our local hospital.
We took Daniel in and waited for the doctor to report back to us. I sat in disbelief as he came in and began to tell us that Daniel had a blockage between the large and small intestine. He said I cannot see what is on the other side, he did a biopsy and said we will know in a few days the results.
The shock of how to tell a 19 year old that life may get very scary for him in the days ahead. We sat on pins and needles waiting for the phone call. The call came and the Doctor said it is cancer. Daniel would need emergency surgery because his bowel was almost totally blocked.
We carried him to UAB in Birmingham Alabama. The did a CT Scan and came out to tell us that Daniel would have emergency surgery, he was totally blocked. We prayed and held him to reassure him that he was going to be fine.
It seemed like hours before the doctor came out to talk with us. She said that the tumor was 8.6 centimeters, it had broken through the wall of the intestine and invaded some lymph nodes. He would have to have another surgery and then they would start chemotherphy. She said the road would be long and hard but Daniel was young and she was hopeful.
In August 2005 Daniel started his first chemotherapy treatment. The unknown was so hard, how would he react to the drugs?, would he lose his sense of taste, smell?, and the list went on and on.
He started with Avastin and 5-FU. Just as Daniel had begun his journey another shock came to our family.
On October 10, 2005 my youngest brother was diagnosed with stage 4 colon cancer. Now if you remember Lamar and I both had the J-Pouch installed so we would avoid colon cancer again. This put me in the high risk category, I had not been scoped since 2001. They set me up for the colon scope and I had two polyps that had grown on the artificial lining. My journey began again to stay ahead of cancer. We now had two precious boys fighting to live.
After this diagnoses to our family the doctors wanted me to do the genetic testing to see if we were in fact carriers of Familial Adenomatous Polyposis (FAP). They went through our family tree to trace as far back as we could to see how deep this disease was. We believe my dad's father also had the disease since he had colon cancer as well. It was a simple blood test that took 3 months to come back. The news was positive, I have one missing link in my DNA that caused this disease. My brother and I got the disease from our father, and my youngest got it from me.
My brother Lamar had all the surgeries, chemotherapy and radiation treatments that could be done. He lost his battle on Friday July 13, 2007, he was 39 years old.
Our son Daniel fought a long and hard battle. He had an 11 hour operation in Pittsburgh to hopefully give him more time. The doctor did a de bulking surgery where they went in and removed as much cancer as they could and put hot chemotherapy inside of him to try and kill out all cancer that was left behind. The removed the spleen, resected the liver, scrapped the pelvic bone, they could not do much to the diaphragm but cleaned it up as best as they could.
This surgery was so hard on Daniel but he did better than anyone the doctor had done this surgery on. He had to take radiation treatments on his pelvic when we got back to Alabama at UAB Hospital. His bladder never did function again on its own so he wore a cather.
Daniel Bickerstaff age 19 Treatments and surgeries for Colon Cancer/Gardner's Syndrome:
His diagnoses came on June 17, 2005 after he had the scope of his large bowel. The doctor came out to tell us that he had a blockage that was so large he could not get passed it to see what was on the other side. He did collect a biopsy to have it sent off to see if it was cancer, he almost told us then that Daniel would have cancer. In a few days the report came back positive for colon cancer. When Daniel had turned 19 on June 4, 2005 our health coverage was out on him. We had no medical insurance to help find a doctor who would cover him. I called my surgeon at Carraway in Birmingham to see if they would take him and then file for Medicare/Medicaid. He said they could not take him.
We knew that time was running out because the doctor said he was almost totally blocked and would have to have surgery in at least 2 weeks. I awoke to hear him throwing up in the middle of the morning on June 28, 2005. I got dressed and drove him to UAB in Birmingham Alabama. When we walked in I told the lady at the front desk his diagnosis. She did not ask for insurance cards, they put in him the wheel chair and took him straight back to the ER. The doctor came in and ordered a CT scan; I waited patiently for him to return. The doctor came in and said he would have emergency surgery that afternoon. I called my husband and he let our family know what was going on. We sat by his side until they came to get him. He asked me if he was going to be okay, and I said yes you are. We prayed and asked God to take care of him.
After 4 hours the doctor called us into a small room. She said Daniel had a tumor that was 8.6 cm. it had already gone through his intestinal wall. She said the road is going to be long and hard. Because he was so swollen he would have to have one more surgery before they could start treatment with chemotherapy. He had an ilestomy and we hoped that one day they could reverse it.
Treatments For Daniel including a Radical Surgery to give him more time:
Daniel began his chemotherapy on Tuesday August 2, 2005. His chemotherapy was Avastin & 5-FU with Dexamethasone 4 mg. Zofran 8 mg. Procholorperazine 10 mg. Fluorouracil, and Heparin. Daniel did this regimen until May 2007. The doctor told us she was all out of ideas for treatment with this cancer. She then told us of a Doctor in Pittsburgh Pennsylvania, who was a skilled doctor with a new type of surgery that may give Daniel more time and hopefully kill the cancer out. We had to work with the hospital in Pittsburgh to get his Medicare and Medicaid to pay for this surgery. With a lot of prayers and kind people they gave us clearance to have the surgery done. We are friends with a pilot who flew for a business. He worked the details out and the company paid for the fuel and furnished the private plane for us to fly Daniel there.
Dr. Matthew Holtzman was the surgeon, a wonderful man whom we shall never forget. We arrived on June 28, 2007; they had a house across the street for people who traveled from a long distance to stay in while we were there. Daniel was admitted to the UPMC Shady Grove Hospital on June, 28, 2007. The surgery was on June 30, 2007. The name of the surgery is peritoneal carcinomatosis secondary to colorectal cancer.
This is the report from the Operative Report:
Procedure: Exploratory laparotomy, radical intraperitoneal tumor debulking with peritonectomy, splenectomy, cholecystedtomy, small bowel resection, resection of ileoanal pouch, wedge resection of liver x2, placement of intraperitoneal catheters, intraperitoneal hyperthermic chemoperfusion with mitomycin-c x100 minutes, bilateral ureterolysis, end-ileostomy, and gold fiducial placement.
Findings:
Widely metastatic peritoneal carcinomatosis from colorectal primary. This included sheet like disease over the right hemidaphragm, approximately 1-2 cm implants on the left hemidiaphragm as well as the spleen. There was a 3 to 4 cm implant involving the gall bladder and the adjacent liver in segment 5. There were implants on segment 2 of the liver. There were approximately diffuse 2-4 cm implants on segment 2 of the liver. There were approximately diffuse 2 to 4 cm implants along the small bowel mesentery down to the pelvis. There was large bulky disease involving the pouch with a large tumor burden in the presacral space. There was an approximately 8-cm mass involving the mid section of the small intestine in the anterior abdominal wall adjacent to the umbilicus. There was another 2-cm disease involving both paracolic gutters. The resection was an R1 resection, leaving disease in the pelvis.
Procedure:
The patient was placed on the operative table in the supine position. The patient was placed under general endotracheal anesthesia. The patient was prepped and draped in normal sterile surgical fashion. A long midline incision was created. The peritoneum was entered. Inspection of the abdomen revealed the disease as described above. We start in the upper abdomen. We completed an omentectomy and took this up to the spleen. The spleen was mobilized, and we came across the splenic vessels with the white load of the Endo GIA stapler. The spleen was then removed with the attached omentum. Attention was then turned to left upper quadrant. The liver was mobilized. A cholecystectomy was performed from topdown. The cystic duct and cystic artery were identified and ligated. An adjacent mass in the liver was resected with a wedge resection of segment 2, removing the disease and sending this off for pathology. At this point, we ran the bowel from the ligament of Treitz to the terminal sown to the pouch. There was small volume disease along the entire mesentery. We performed stripping of this disease and ablation with argon and electocautery. Bilateral ureterolysis down into the pelvis. In inspecting the distal small bowel and ileoanal pouch that had been previously created, there was significant involvement of disease in the mesentery and the pelvic sidewalls, especially the presacral space. We began to mobilize this pouch and realized the quite sizeable amount of disease at this point. Frozen section was performed in multiple of the peritoneal masses, and this did confirm metastatic adenocarcinoma with colonic origin. I felt that the disease in the pelvis was likely going to obstruct the pouch if this was not removed. I came across the small intestine with the blue load of the Endo GIA just proximal to the area that was involved in the disease in the pouch. There was approximately 190 cm of small intestine electrocautery and LigaSure device, came down to the distal most portion of the pouch just at the level of the anastomosis. We attempted to remove as much tumor as possible. We then used Bovie electrocautery to come across the pouch in its distal most portion. This and the tumor attached were removed. We then oversaw the distal rectum with 0 Vicryl suture. There was tumor adherent to the sacrum. Upon entering the abdomen, we had to mobilize and approximately 7-cm mass involving the anterior abdominal wall in the mid section of the small intestine. We were able to dissect this free and perform a small bowel resection of only approximately 6 cm that was attached to the mass. This was sent for pathology. At this point, I felt that we had done the best debulking that we could do at this point. I placed my intraperitoneal catheters. The abdomen was prefused with mitomycin-c for 100 minutes. We used 30 mg for 60 minutes and 10 mg for the remaining 40 minutes. The average temperatures were around 42 degrees centigrade within the peritoneum. At the end , the catheters were removed. The peritoneum was inspected. There was no evidence of ongoing bleeding. A side to side functional end to end small bowel anastomosis was created with a blue load Endo GIA 60 stapler. The common edge was stapled with the TA-45 blue load. The common edge was undersewn with a 3-0 Biosyn. The remaining portion of the anastomosis was over sewn with 3-0 silk sutures. Attention was then turned into the pelvis. Four gold fiducials were placed into the pelvis for assistance with postoperative radiation. And end-ileostomy was created in the right lower quadrant and matured with 3-0 Vicryl after the midline wound was closed. The midline fascia was reapproximated with #1 looped PDS. Prior to this a drain was placed in the pelvis and brought out through the left lower quadrant. The skin was then closed with skin staples. At this point the ostomy matured and then an appliance was applied. A dry sterile dressing was applied. The patient appeared to tolerate the procedure well. He was awoken from anesthesia, extubated and brought to the recovery room.
This surgery gave Daniel almost another year to live, he passed away on May 18, 2008 at the age of 22.
I hope this helps some of us as we struggle to survive this disease.
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