Help Selecting Treatment For Stage 3 Duodenal Cancer

Is there anyone out there who has been diagnosed or knows someone who has been diagnosed with Duodenal adenocarcinoma? My husband was diagnosed ( Age 34) he had a whipples resection where thay removed his duodenum, head of pancreas and base of stomach and 16 lymph nodes 4 were cancerous.
We have been told that this cancer is very rare. We cannot seem to find very much information on this cancer. It would be wonderful to hear from someone who knows something about this disease.
Regards
Belinda

Belinda:
I was diagnosed with duodenal adenocarcinoma one year ago at the age of 46 and fortunately I did not have to have the whipple, just a resection. They removed 22 lymph nodes and 4 were cancerous. I had symptoms for 3 years before I was finally diagnosed with a capsule endoscopy. I had chemo for 4 months and tolerated it pretty well. Since then, I have been cancer free, and I was stage 4, as the cancer had traveled to the lymph node in my neck after my surgery.

I have not found much info. on this type of cancer, either, so I am glad to hear from someone else who has experienced it. Although, I am sorry that your husband had to go through the whipple - I know that is rough!! Is he going to have chemo?

I will pray for your husband - my faith has been my salvation!!

Janet L.

Hi Janet,
Thank you so much for responding. Congratulations on getting through the op. and chemo and for being cancer free. Even though you didnt have to have a whipple it takes a while to get to that part of the body!
My husband, Reini (34yrs) has just finished 6 months worth of chemo today. Am very interested in what other adjuvant chemo treatments duodenal cancer patients have had since it is so rare.
Reini was diagnosed on 5 NOv 2004, you said you had symptoms for 3 years, I am sorry that they did not pick it up earlier what were your symptoms? reini had hunger pains)for about 6 months after a bout of food poisoning, they thought it was an ulcer and had taken ulcer tablets that had stopped the pain for a few months then it would come back, when they finally did an endoscopy they thought he had an ulcer, the gastroenterologist actually congratulated him on the second largest ulcer he had seen and sent him home with ulcer tablets. Luckily the doc took a biopsy because of the size and called him back a few days later to do a ct scan ( which didnt show anything) also his blood tests did not show any tumour markers like CEA or CA19. Was your cancer detected in any tumour markers in your blood?
6 weeks to the day that we had our first baby, Mia Grace, reini had his whipples an epic 10hr operation.

Reini had 6 weeks to recover from the op. (he was in hosp for 15 days, intensive care for 4days, his lung collapsed due to the pain he was in, lost about 12 kg)
Every fortnight from jan 17th till this week he has had chemo 5fu irinotecan (cpt11) and leucovorin.
The protocol he had is called Folfiri It is prescribed usually for metastatic colorectal cancer. THe oncologist said that there was no protocol for this type of cancer because of its rarity. Its good that your chemo didnt knock you about too much. What chemotherapy did you have?

The chemo would knock reini around for the first week, he would get his appetite back every g ood week of the fortnight and would exercise , meditate and drink fruit and veg juices to give him more energy.

The oncologist did a test on the tumour and found it to be microsatellite unstable ( missing the mlh1 gene) with his age and the unstable tumour they believe he has HNPCC (heriditry non polyposis colorectal cancer) although he has no known cancer in his family.
I was wondering whether the doctors tested your tumour for this?.

they have said that this syndrome predisposes you to other large colon cancers so he will have to have a colonoscopy annually.

It is good to hear that you are going well. how did they find the affected lymph node in your neck after the operation? Did they operate to take it out or did it go away with the chemo?

Reini also had a PET scan before the operation because they couldnt really see it in the ct scan, the pet scan showed one hot spot where the tumour was but not the lymph nodes that were affected they guess it was hidden behind the tumour.

It is fantastic that you are cancer free ,How often do you have check ups now?
They have booked reini in for another pet scan in november along with a ct scan and colonoscopy and endoscopy.

I am so sorry I have talked my head off to you and have thrown so many questions at you. You are the first person we have found that had duodenal adenocarcinoma, we are so glad to hear from you.
GOd bless, you are in our prayers too, our faith has also got us through
Hope to hear from you soon
Belinda, Reini and Mia Grace

Belinda:
It was good to hear back from you - like you said, this is such a rare cancer that it really helps to talk to others who have experienced it. My symptoms were intermittent stomach pain and anemia. The first test I had was a CT scan and it didn't show anything, and neither did all of the other tests. What a coincidence - I ended up in the ER 2 years before I was diagnosed and the dr. there said I had an ulcer!! I guess because my pain was not really severe and I would only have pain every few months, the dr.'s weren't too concerned. I had another dr. who thought it was my gallbladder and heavy periods. But my anemia got very bad (hemoglobin was 7)and that finally got their attention. The capsule endoscopy is where you swallow a camera in a pill and it takes pictures of your diegestive tract. The regular endoscopy did not reach the part of the intestine where my cancer was. I had a tumor the size of an egg which was ulcerated. At first they said I had no tumor markers, but now my oncologist said that my CEA has been very low and looking back 2 years ago it was high, so she thinks they can use that as a possible predictor. I go every 3 months and all they do is check my blood for liver function, hemoglobin, white blood cell count and the CEA. The dr. said she will probably do a CT scan in Dec. It's scary because there aren't really any good tests - I had every one in the book and they still didn't find my cancer for 3 years! Because it is so rare, they don't want to check for it - I remember my dr. saying he had another patient with a tumor in her small intestine, but "it is so rare". Maybe as more people are diagnosed with this, they will check for it earlier on. My dr. said the best thing going forward is just to be aware of your body and symptoms or changes that you notice. I had 5FU and leucovorin. They didn't check my tumor for the HNPCC, but I will ask my dr. about that on my next visit. I thought this type of cancer was not related to colon cancer?!? Even though the chemo protcol is the same as for colon cancer, but that is because like you said, it is so rare. The oncologist was feeling my lymph nodes and found the one in my neck that was swolen, which made mine a stage 4. It went away the 2nd day after my chemo, so that was good!! They don't like to remove the nodes in your neck, because there are so many vessels and nerves in that area. My dr. checked about doing radiation, but didn't think it was a good idea. I live in Texas and had tried to get in to MD Anderson, but they only have one dr. who treats this kind of cancer and it is a first come, first serve basis, and I didn't start the process of getting in there until a month after my surgery. It was going to take another month to get in to see that dr., so I decided not to wait. My oncologist is in contact with MD Anderson and follows the same protocols - she used to work there. She did not do a PET scan on me because she said there were no benchmarks for this cancer. Instead they did several CT scans to try to determine if the cancer had spread anywhere else. My surgeon had told me that he had another female patient older than me with the same cancer and she was cancer free 3 years after her surgery. That was good to hear!! I am so grateful that mine had not spread to my liver, as that is the first place it usually goes. The surgeon even did a sonogram of my liver during my surgery to make sure. I was very blessed, actually, since I had the tumor for so long. And you are blessed to have Mia Grace - I know she must be such a comfort to you during this time! I think it is so much harder on the spouse, because they feel so helpless. My husband was wonderful during my ordeal, and I have a 12 year old son. I was scared at first because he was the same age I was when my mother died of lung cancer (she was a smoker). But God has been so good and carried me through this. I try not to think about it coming back, but it is hard! I have been reading on the internet about some natural supplements people take - I may try some. There is a website www.plwc.com that has some links. It sounds like you live in the U.K. - I have a good friend who lives in Aberdeen! She was my neighbor in Houston for several years. I had better let you go - please write back when you have time and don't worry about asking questions - I don't mind answering them!
Blessings,
Janet

Belinda,
My mother has just been diagnosed with this as well and is still at the evaluation stage. We go for more testing this coming Tuesday. I too am interested in finding information on this cancer. They have apparantly made great strides in recent years with this based on what I have seen in my research here on the web. In the 1980's there was a very small percentage of patients who survived this but I'm finding posts from people now who are several year survivors. As a breast cancer survivor (5 years) I know the importance of knowledge in waging your battle against cancer and it is frustrating to find so little on this particular cancer. I would appreciate any information you can forward or find on it. I hope your husband is improving and will say a prayer for him.
Nancy

Hello Nancy,
we are sorry to hear about your mother.Sorry it has taken us a while to respond. Have the dr's staged your mother yet? We are thinking of you all.Please let us know what the drs have said re. staging, we are here to help
kind regards Belinda

Hi Belinda, Sorry to hear about your husbancd. I hope he is doing OK. My father (85) just had a whipple's procedure. He had Colon Ca last Oct. I can't find information for staging of the disease. Do you have any good web sites for this? They claim he will not need chemo or radiation for follow-up. He did have local lymph node involvement. I'd appreciate any info you might have. Joyce

Joyce:
There is good staging info. on the National Cancer Institute website. I was a stage 4, as mine had gone to a lymph node in my neck. But now, 8 months after my chemo ended, I am doing well and there is no sign of recurrence.

I hope your father is recuperating well from his Whipple. I did not have the Whipple, only a resection. I am surprised they aren't doing chemo if he had local lymph node involvement. I had 4 out of 22 that were positive and they said I needed chemo, even before it showed up in my neck.

Take care and keep us posted!

Janet

Belinda:
I have been wondering how your husband is doing? I have been praying for him and your family. I hope all is well!

Blessings,
Janet

Hi Janet,
I'm glad you're doing so well. Thanks for the info. My Dad is not having chemo because the MD said there are no studies that prove the chemo would be beneficial. He said if he were a young person they would do it even though the evidence did not show a benefit because the evidence also did not show that it did not help. He has a pacemaker and cardiac issues and the chemo would be far worse for him than if the cancer reoccurred at his age. They said the distal lymph nodes only had microscopic cells in them and they felt they were 99% sure they got it all.
Quality of life is an issue to consider, and how rapidly it could reoccur if it did.
I will check the National Cancer Institute site. The doctor treating my dad is affiliated with Sloane-Ketterling Hospital in NY.
I hope you continue to have good health.
Thanks,
Joyce