Laura Story - Blessings

Update on My Journey

Today I went for my blood work to see if my iron is staying where it needs to be. Please be in prayer for me on Monday I will be going for my first Colonoscopy and upper EDG since my surgery in 2010. These test is to make sure there is no cancer laying around hidden from the CT and MRI Scans. I am anxious and so ready to get this over with. I spoke with Dr. Blume yesterday so I could let him know my family history before he does the test. He said I am a little complicated!! LOL that is an understate. So please lift me up in your prayers.

Thanks,
Pennie

I'm Still Living Life One Day At A Time!!

I have had a great summer. God blessed us with a wonderful garden and flowers to galore. The most joyous part of this summer was working side by side with my wonderful husband. I cannot thank God enough for giving me a strong loving husband who is always my best friend for better or worse.

A ministry has begun with the start of dirt, seed and water. The Lord opened the door for me to be able to travel to Oneonta two days a week to deliver fresh vegetables to the elderly at a very low cost. Yes I know we could have made a lot more money but what is money??? A dollar here and a dollar there paid for us to have a great vacation doing just what we love, driving, eating, looking in Antique shops, and making memories.

How am I feeling now after surgery in 2010? I am doing great. I live each day to the fullest and on the few bad days I just remember to rest and I know tomorrow will be better. The end of September I went back for my 3 month check up with the oncologist and he was so pleased that I was doing so well. When the lab work came back to my surprise my iron level was at 49 and my b12 was low as well. So I went back to receive an iron treatment and a b12 shot. I am highly allergic to an iron infusion so we did the iron push. I did not have a reaction to it so I will return this Monday for one more treatment.

I have a one day trip planned on Tuesday to go to Tennessee with a Red Hat lady group. I am so looking forward to that trip. I also joined a Rose Garden Club this year and I am having a blast. We have been on few trips this spring and summer. I helped with the Fair Booth this September and we entered a lot of our produce, flowers, crocheted doilies and Donald's hand made cross along with a shadow box. We took home 7 blue, 4 second place and 3 third place ribbons. Our fall garden is well underway and we hope to be able to help out folks with some fresh veggies around November hopefully until January.

I had a major scare early in the summer. We thought the cancer might be making a comeback, Praise God it was not. I told Dr. Pineda that I knew my chances of living to be in my 60's was slim but while I am here I am going to keep running and enjoying life. He said you have the best outlook of any cancer patient I have ever had, except for my sweet mama. Who knew that he would be my mother's doctor and then years later mine. My motto is don't think of what you can't do but do the things that you can and enjoy it.

I hope you have had a great summer and I hope you have a great winter no matter how cold it gets let the Son Shine in and out of you.

God Bless,
Pennie

Duodenal Cancer, What is it and where is it?

This disease is very rare, most people have no idea where their duodenum is and or what it does. Living with this type of cancer is very hard. The duodenum is attached to the pancreas and small bowel, it is a major organ that you cannot live without. The surgery to remove the middle section of the duodenum sometimes is found to late to remove the tumor because it invades blood vessels and wraps around them to suck the life out of your body. Research on how to treat this cancer is very little so that leaves us in the open field to try and figure out what roads do we take. If the cancer returns on the small amount of duodenum there is no way to remove it by surgery. Currently we have no chemotherapy or radiation to kill the cells out. I am very blessed to have found a yahoo e-group who are in the same boat as me. We share what we have learned, what foods bring on the horrible bout of pain after eating, and the everyday hell we live with. When people hear our stories they say oh you look so good. The outside does look good, it is the inside that is sick and tormented with waves of pain, nausea, and it drains our energy to where we have to stay in bed or rest in the recliner. Our lives have changed so much and my journey is to help others who are going through a cancer diagnoses. I hope you read this and let me know what your thoughts are.
Thanks,
Pennie Bickerstaff

Duodenal cancer
Classification and external resources
Endoscopic image of adenocarcinoma of duodenum seen in the post-bulbar duodenum.
ICD-10	C17.0
ICD-9	152.0
MeSH	D004379

Duodenal cancer is a cancer in the beginning section of the small intestine. It is relatively rare compared to gastric cancer and colorectal cancer. Its histology is usually adenocarcinoma. Familial adenomatous polyposis (FAP), Gardner Syndrome, Lynch Syndrome, Muir-Torre syndrome, Celiac sprue, Puetz-Jeghers, Crohn's Disease and Juvenile Polyposis Syndrome are risk factors for developing this cancer.^[1]
The duodenum is the first part of the small intestine. It is located between the stomach and the jejunum. After foods combine with stomach acid, they descend into the duodenum where they mix with bile from the gall bladder and digestive juices from the pancreas.

Duodenal Cancer is a rare tumor that occurs less than 1% compare to other cancers. This tumor affects the duodenum periampullary regions or the ampullary. Many of the Duodenal Cancer could be easily found at an early stage. This is because when the tumor occurs in the body then they could be easily noticed by the lymph nodes and adjacent structures.
EarlierDuodenal Cancer could be easily found out by the endoscopy without identifying the symptoms of the disease. A new type of cancer found recently that are found on the duodenal bulb. By using the gastrointestinal radiography, the cancer could be easily detected. In this article, the radiographic, clinical and pathologic detection of cancer is discussed.
Case Report of patients affected by Duodenal Cancer
An 85 year old man observed different health problems of iron-deficiency anemia, guaiacpositive stool and aporadic pain in the lower abdomen. The doctors treat the patient by using H2 receptor antagonists. The gastrointestinal radiography has found out the stalkless and a small bit of lobulated polyp at the lower part of the duodenal. This ulcer has the diameter of 1.3 cm that was distinct from pylorus. Later on doctors found a 1.5 cm polyp by doing endoscopy of the duodenal bulb. By performing endoscopic biopsy has revealed out a papillary adenocarcinoma.
During the surgery, a tiny lobulated polyp of 1.5 cm is observed in patient duodenal bulb. The treatment of the patient is done by using gastroduodenectomy . After the pathologic examination of the cut edges, the treatment has brought out the papillary adenocarcinoma that was present at the bottom of the duodenal bulb. This ulcer was detected as a mucosa, whereas the lymph nodes are not affected by this cancer.
After the treatment, the lesion was known pathologically as the Duodenal Mucosa Cancer.
Discussion:
Duodenal Cancer is uncommon, but yet it is responsible for small cancers from 45% to 65%. The tumors are found in duodenum due to the adenomatous polyps that was present beforehand. This cancer is generally found in periampullary regions or ampullary regions that are near to the duodenum. Sometimes, the tumors could also occur in other body parts.
The symptoms of the Duodenal Cancer are nausea, vomiting, epigastric pain or weight loss. Most of the diagnostic patients that have Duodenal Cancer suffer from poor prognosis that would reduce the survival rates by 5 year that ranges from 20%-40%. The other factors that hamper the survival rates in patients could be the presence or absence, depth of invasion, symptoms durations and distant or nodal metastases.
The advanced stage of the Duodenal Cancer is found as the ringe lesions, ulcerated or polyploidy. Earlier reports have not detected the Duodenal Cancer. These could only be found due to the radiography and by endoscopy. Other tumors could be found by the radiography referred as the polypeptide lesions. Both the type of the polyps looked smooth and rounded in shape. A common type among all these is the benign tumors. The barium studies have showed that the polyps having more than 1 cm diameter were the ulcerated or lobulated lesions.

Happy, Happy

I am so thankful that God has protected me once again from the big scare of cancer. The surgeon said he thinks I have a small hernia. We are going to watch it and hopefully it will not grow to be any bigger. Thank you so much for all your prayers.

Pennie Bickerstaff

The Waiting Game Begins Again...

At the end of last week I noticed a blue, dark spot on my tummy. I felt there and noticed there was a knot and it is tender to the touch. I had an appointment to see the oncologist on Feb. 28, 2013. At that visit he wanted to know if there is anything new, reluctantly I told him about the tenderness.
He ordered an ultra sound and for me to see the surgeon. He said it is a palpated hardened nodule and he wants it out. We are being over cautious and for great reasons.

Today March 1, 2013 I had the ultra sound done of my spleen, pancreas, liver, and where the nodule is located. Once again the waiting game begins, I will see the surgeon on March 13, 2013.
I am asking that you lift me up in prayer, I am still in remission and I would love to stay that way.
When the doctor at UAB did my surgery in 2010 he told us it was precancer. The pathology report states that I had cancer cells in my duodenal.

Just so you will understand how serious this disease is and what force it carries because there is no current research on how to treat or kill out these cells on the market today.
I have met people all across the world some live in Countries where they don't know a thing about how to deal with our bodies. Unfortunately here in the United States most doctors do not know either so they send us on our way. We reach out and try to share our pros and cons on what we learn at our doctor visits and test.
One person was sent home to die, no surgery, no treatments and no hope.

I am so thankful for Dr. Pineda my oncologist who has guided and helped me through this journey.

Pennie Bickerstaff

Duodenal Cancer

If you know of anyone who has been diagnosed with duodenal cancer we have a database spreadsheet designed to help those learn about our treatments and options.  We have found comfort in sharing our journey with those who have been there.  This is a very rare cancer and there is very little known about how to treat it.  We need your prayers and we want the public to be aware of this disease. Our lives have changed forever and we may never live to see a cure in our time.  This spreadsheet is so important to help those who are starting their journey. If you area diagnosed duodenal cancer survivor please contact us on the yahoo e-group below.

We have a yahoo e-group just type in your search engine (duodenalcancer · Duodenal Cancer Group).

Thanks,
Pennie

I'm Still Winning!!!

On February 14, 2013 I will Celebrate Valentines Day with the love of my life.  It is not just any Celebration it is the day before my 3rd Anniversary of beating cancer again. I love Donald with all my heart and we have learned to TRUST GOD with all our needs.  He knew I would need a man who would love me and be my biggest supporter.  I told him just the other day how much I love and adore him for taken care of not just me but my family.  He was a great caregiver to my mom, dad, brother, our son and now my uncle. 
I always stop to smell the roses, I don't mind the thorns either it cannot always be pain free.
Sharing what God has brought our family through is a blessing in disguise.  When I reach out to a new cancer patient, or a mom and dad who has suffered the loss of a child, or a lady who feels like she is not useful anymore because of her handicaps, it is not me, it is GOD.
I never know just where the road will lead, why I don't mind so much anymore I just trust GOD.  All I have is the promises that He loves me and knows me better than anyone.  I will Celebrate the Victory of Surviving my second cancer diagnoses.

God Bless,
Pennie

The Beginning of our Family History with FAP!

It all began with my fathers side of the family. In 1976 we learned that our father had colon cancer. Now at this time in life we did not know that this was a very rare form of cancer, nor did we know that his children could be effected by it. There was no specific diagnoses, we were just told it is colon cancer.

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.

Approximately four to six weeks after the first surgery, an x-ray study of the pouch is performed. If the study shows that the pouch is healed, then the second surgery can be scheduled.

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.



                                    Printer-friendly version