Adenocarcinoma of the Duodenum survivors

My mom was diagnosed on
My mom was diagnosed on Monday (6/4/12). We are also being given a grime prognosis yet I see some hope based on the posts I've read here and on other sites. Since we are just beginning this journey about the same time, should we share/compare treatment plans we are receiving from the various doctors so we can see what options or commonalities there are.

My plan is to take her to Dana Farber (Boston), Sloan Ketterin (NY), John Hopkins (MD) and MD Anderson (TX). I am afraid I may be wasting precious time but don't want to leave any stone unturned.

Sincerely
Christine

carl17 said:

I have the same diagnosis-


check out a success story on the ' Surviving Duodenal Cancer' discussion board


I am 63 year old male living in Toronto Canada.

I was diagnosed in May 2012. I had the first warning sign when I got deep vein thrombosis (DVT) in January - this turned into a pulmonary embollisim. My low hemaglobin sent them looking for Cancer and I had an upper GI and Colonoscopy both of which were clear. They considered an abdominal scan but didn't do it ("In my 40 years I have only had one that was positive" said the doctor). Actually he has had at least two one he got and me he missed. In May I was back in the hospital after a second set of blood clots and a second pullomanary embollisim. My body was telling them something.

I had the surgery June 1. I had a resection of the small bowel. They removed a 6.5 cm tumour which was maglnant. It is termed an aggressive variant of macropapilliary adenocarcenoma in the small bowel. (4th section of the dudodema). The margins were clear in the resection but the circumference of the tumour ill defined. I am in stage 3a - Spread to one lymph node.
During surgery only 3 lymph nodes were taken out. The surgeon said the others were too close to viens that feed the small intestine with blood and an error could be fatal.


I am surprised that in the US it seems that removal of lymph nodes seemed more prevalent. Certianly I would have preferred that. I am going for a second opinion surgical consult to see if more can be removed. As what I read about the efficay of Folfoxchemo therapy is not encouraging. One study I saw said it was 'sucessful' in 13% of cases - success being defined as prolonging expectancy by 12-14 months.
I also find it disconcertuing that there seems to be no way of knowing whether the chemo is actualling killing the microscopic cells, so a rational decision as to whether to continue with chemo is impossible.

I had a second CT scan which showed a suspicious 1.6 cm soft tissue nodual which is spread of cancer. If I am extremely lucky it could be post surgical trauma.

I started my Folfox chem on Thursday and wore the chemo bag fannie pack for two days which nas now been disconnected. I have had no side effects yet (accept for the occassional hicup spells) but have been told 5-7 days from the initial chemo is the time the side effects of nausea etc. may materialize.

The second difference I see from a lot of the posts is that radiation is used in the US but not here - too much danger of hitting and damaging other organs I was told.

Please stay in touch.

carl

treatment options
Hello fellow Canadian! I agree with you on the differences between treatment in countries. My dad was recently diagnosed with adenocarcinoma of the duodenum. What is bazzare and upsets me is the treatment/diagnosis route. He turned yellow, we went to an emerge where they told us they suspected cholangio carcinoma which he did have a pendulum tumor on his bile duct (discovered in surgery). They gave him a ct the next day which showed dilation of the bile duct. That's it! no tumors. I can't understand why they couldn't see the tumors on the ct. They sent him for an ercp where they inserted a stint. They were supposed to be booking us an endoscopic ultrasound which we waited weeks to hear anything, nothing. I started calling to harrass them and was told we had a follow up for the ercp in a couple days to "ask the doctor why he hasn't been referred yet!" In the mean time his stent blocked and needed an emergency replacement. They told us that they felt it was necessary to go in surgically, they hoped it would just be transection of the bile duct but signed him off for whipples and a few others too. No MRI, No further scans. Exploratory I guess. They did the whipples but came out and said tumor on the Duodenum close to the portal vein so no removal too risky for bleeding. They did a frozen section there which came back undetermined so they did pathology. That was the 13th of July and we went for follow up yesterday and they still didn't have it! They found it by the end of the day and we were told the adenocarcinoma. At that point we were told that depending on what type of cancer it was would decide IF they could treat it with chemo or not because radiation was not an option because it can damage the vein and cause it to burst. I am assuming the adenocarcinoma is treatable with chemo as I can see others have been treated hence we are getting an appt with an oncologist now. The crazy thing is that this all started in MAY! I can't believe the butt dragging that seems to be going on which leads me to believe they have written off my dad. I have been researching some alternative treatments which nobody seems to be discussing here. If anyone has any info to share I am interested.

Rlalimb said:

treatment options
Hello fellow Canadian! I agree with you on the differences between treatment in countries. My dad was recently diagnosed with adenocarcinoma of the duodenum. What is bazzare and upsets me is the treatment/diagnosis route. He turned yellow, we went to an emerge where they told us they suspected cholangio carcinoma which he did have a pendulum tumor on his bile duct (discovered in surgery). They gave him a ct the next day which showed dilation of the bile duct. That's it! no tumors. I can't understand why they couldn't see the tumors on the ct. They sent him for an ercp where they inserted a stint. They were supposed to be booking us an endoscopic ultrasound which we waited weeks to hear anything, nothing. I started calling to harrass them and was told we had a follow up for the ercp in a couple days to "ask the doctor why he hasn't been referred yet!" In the mean time his stent blocked and needed an emergency replacement. They told us that they felt it was necessary to go in surgically, they hoped it would just be transection of the bile duct but signed him off for whipples and a few others too. No MRI, No further scans. Exploratory I guess. They did the whipples but came out and said tumor on the Duodenum close to the portal vein so no removal too risky for bleeding. They did a frozen section there which came back undetermined so they did pathology. That was the 13th of July and we went for follow up yesterday and they still didn't have it! They found it by the end of the day and we were told the adenocarcinoma. At that point we were told that depending on what type of cancer it was would decide IF they could treat it with chemo or not because radiation was not an option because it can damage the vein and cause it to burst. I am assuming the adenocarcinoma is treatable with chemo as I can see others have been treated hence we are getting an appt with an oncologist now. The crazy thing is that this all started in MAY! I can't believe the butt dragging that seems to be going on which leads me to believe they have written off my dad. I have been researching some alternative treatments which nobody seems to be discussing here. If anyone has any info to share I am interested.

hi Rlalimb and all

I can identify with the frustration of delay in diagnosis. As I read other's posts it seems to be the norm. To put it into perspective though my boss's GP has, we think, the same type of cancer and he was unable to diagnose it correctly, ruling out all other and more likely causes, before getting to the real problem.
My attending physician on my first admission to Hospital didn't want to do an abdominal scan since 'only once in his 40 years has he had one come back positive'. He didn't do it and 2 months later I was back in the hospital where the abdominal scan showed a tumour in the duodenum. When I was finally diagnosed by the way - I dug up his name and sent him an e-mail suggesting he change his story to 'that only twice in his 40 yrs has he..the one he found and the one he missed (me) and likey others'.

If I am reading your post right - they did a whipple on your father but did not remove the tumour close to the vein. Is that right?

A CT should show a tumour - how big is it? Mine was in the duodenum and they did a re-section only - no whipple. I am researching and learning as I go but am still confused.
My cancer, like your father's is an adenocarcinoma and not a carcinoma. I have cut and pasted from a google search which I found useful to tell me what it is I have and why it is different. (I have another complication in that mine is an aggressive variant of micropapilliary adenocarcinoma). Any one with knowledge of that I would appreciate if you can pass on to me.

FROM A GOOGLE SEARCH : This discussion will just limit itself to the medical term carcinoma, and its difference with that of the term adenocarcinoma.

First is carcinoma. It is the medical term used to denote cancer. Basically it is translated as a malignant tumor. By malignant it means that the tumor is cancerous and can cause serious problems to the body. Carcinoma here is the general term used to indicate the presence of mutated cells or cancer cells in the body, without indicating where in the body the malignancy is located. The addition of a prefix, for example, adenocarcinoma, makes the term more specific and focused. Here lies the difference.

Adenocarcinoma indicates malignancy in the glands. ‘Adeno’ here indicates glandular tissues. The cancer cells affected are the epithelial cells that line a glandular tissue. You should take note that a glandular tissue or cell is a part of the body that specializes in secreting substances into the body, for example, the mammary glands.
That is the difference between the two terms. You can read further into this topic since only basic details are only provided here.

Summary:

1. Cancer indicates the abnormal growth or malignancy of cells that are mutated and cause damage to the body.

2. Carcinoma is the general term used to indicate a malignancy or malignant tumor.

3. Adenocarcinoma is the term used to indicate a malignancy in the epithelial cells lining of glandular tissues, which are tissues that secrete substances into the body.

***end of GOOGLE search definition


I am on chemo (FolFox) but there is no way of knowing whether it is working or not as the METS or small micro cancer cells are undetectable on a CT. With your father you can tell if the tunour shrinks or disapears via a CT scan. My CT shows no residual cancer evident but there is no way of knowing whether the Chemo is working on the small micro bits. From what I have read the efficay is low
(< 10%); but I can not walk away from that. Fortunately my side effects are minimal so I am going through 12 rounds (I have completed 4 now).

Good luck with your dad - where are you located in Canada? I am fortunate enough to be in Toronto with access to some of the best cancer facilities.

Hope things work out for you

Carl (the lion)

catwoman18901 said:

My brother in law is not
My brother in law is not doing well. He's now weighing 135#, dropped 9# in 3 days. He was in the hospital for a week because of severe vomiting, diarrhea & dehydration. At 6'2", he looks like a skeleton. Chemo has been very rough, as I'm sure it is for everyone. He said the other day he doesn't know why he's suffering through the treatment, that it's not going to cure him, but my sister keeps telling him he can't give up. I'm worried about her. She's not talking to anyone about what she's feeling. I don't know if she's still in the denial stage. She's always been one to stick her head in the sand & I think as long as she doesn't acknowledge it, in her mind it doesn't exist. I told her she needs a support group & maybe even some meds for depression. I came to this site for hope, yet as I read through the postings, most are from years ago & I wonder if the people are still living. This is one of the worst types of cancer & survival rates are so low. It makes me very sad to think of him losing his battle. Life is just not fair.

Michele

Michele
Sorry to hear about your brother in law. I can relte to what you are saying about your sister. My husband shut down as well. Like he could not process the information. At one time it looked grave but now hope has dawned, though still a serious situation. I took my husband in to his doctor and he is on anti-depresents. I agree a support group may be helpful. I process by talking to others, my husband , like your sister turn inward. It is tough getting someone talking and coming to some kind of hopeful reality. It is sad to think this may not be possible for your brother-in-law and that he has to make some treatment decisions which are not easy. You can see my post above for my situation. Is the chemo working? who knows but for me at my stage I can't just walk away.

good luck to all of you

I am thinking about you.

zeanbean said:

My mom was diagnosed on
My mom was diagnosed on Monday (6/4/12). We are also being given a grime prognosis yet I see some hope based on the posts I've read here and on other sites. Since we are just beginning this journey about the same time, should we share/compare treatment plans we are receiving from the various doctors so we can see what options or commonalities there are.

My plan is to take her to Dana Farber (Boston), Sloan Ketterin (NY), John Hopkins (MD) and MD Anderson (TX). I am afraid I may be wasting precious time but don't want to leave any stone unturned.

Sincerely
Christine

Positive thoughts
My husband was diagnosed last December with duodenal adenocarcinoma stage IV with metastasis to the liver. He had a gastro-jejunal bypass 12 days after his diagnosis the delay mainly related to looking for the right surgeon. He started his first chemo treatment in January of 2012. His initial chemo consisted of Xeloda, Oxaliplatin and Avastin. This Summer the nodules in his lungs were confirmed as metastasis from the primary tumor. His treatment was changed to Irinotecan, Avastin and Xeloda.
Throughout these almost nine months, there have been a lot of tears, anger, depression, faith. I have received words of encouragement from friends, friends of my friends, acquaintances,co-workers. Although the odds are not on the side of those suffering from this type of cancer. It is essential not to give up. I am in an emotional rollercoaster, but I still know that we will overcome this illness despite losing some battles. I considered myself a strong and independent woman, but this problem has shaken our world. It is OK to fear the future at times, it is OK to cry and feel overwhelmed; however, after a few days one must be ready to stand up and continue the battle.
One must do whatever is necessary to strengthen your psyche. My thoughts and positive energy goes to everyone who like us is trying to survive this awful illness. I recommend studying and reading all journal articles related to duodenal adenocarcinoma; moreover, I keep a journal of all chemo treatments,lab results, CTs, ER visits, symptoms, medications etc. I am my husband's advocate and up to now his medical team has been open to this partnership. I have found non-pharmacological treatments to help him with some of the side effects. Although trained in western medicine, I believe in alternative treatments to potentiate medical treatments.
I look forward to reading everyone's postings and I am open to any specific questions.

Do not lose faith!!!

Duodenal cancer stage 3

Hi everyone. I would never imagine I will be in such a situation. My father had a heart surgery in 2011. Since then mwe were worried about his heart. We thoght only about it. Since last year he has had diarrea nearly all the time. But we thought it was disbacterios. Last month he turned yellow and went to a doctor. After blood analysis the doctor sent him to have ct scan which revealed a tunour on his duodenum. So after all tests I heard the worst. Duodenum cancer. I know it's very rare. Fortunately it hasn't reached the lever. He had a whipple. His duodenum, gallbladder, part of pancreas, part of stomach,gallbladder were removed. The ct scan hadn't shown the metástases to these organs. His adenocarcinoma is stage 3. He should start chemo in two weeks maybe. We haven't received the tumour analysis after iperation. I have been crying for a week. My father is 56. He is such a good person. I don't want to lose him. My daughter is one year old and he loves her so much. I want him to live longer and have many grandchildren.I need some encouraging words from all of you.

Osproul said:

Sedabaf

Hi,

My husband has stage 4 Duodenal cancer. He wasn't able to undergo the Whipple because it had metastizied. He was diagnosed 5/12/16 and is still going strong. He is a fighter. I've heard that after the Whipple you are cured or have to have minimal chemo so your dads situation sounds very promising. I wish you the best!

Osproul

Thank you for your reply. My father turned to be a lucky one. In fact my father's stage was 4, but they didn't tell me because I live abroad. According to CT scan his lymph nodes were also included but after surgery the analysis results came to confirm that none of 34 lymph nodes were cancerous. That was a miracle. His pancreas was not included too. The  tumor has damaged only the duodenum.So he already has a port put on his chest and will start the first tound of chemo the day after tomorrow. He will have to be in the hospital for teo days every 2 weeks. I guess this is the hardest part of this journey. He has lost weight and I don't know how he will go through this but I have great hopes that the worst is in the past. We have to pray God that cancer will not come back.

Starting treatment on Tuesday

Good evening,

After my husband surgery of his duodenal he was diagnose with cancer stage 3b this November. he is starting his chemo on Tuesday with 6 rounds of chemo administer once every other week followed by 6 weeks 5 days a week of radiation and around 3 rounds of chemo after. Tough pill to swallow! We hope that he is able to tolerate this powerful drugs. We offer all this to our God Almighty! I hope we get lots of supports from this community who is going thru like us. Any advise and prayers are most welcome!

Peace and Love