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Pancreatic Endocrine Tumor

Yoshi
Posts: 4
Joined: May 2010

Aloha, my name is Yoshi. I am Japanese, but from Hawaii. :-)
My partner just found out that he has "metastatic pancreatic endocrine tumor". I think it's different from regular pancreatic cancer. But his doctor doesn't have any experience of that kind of tumor. So we are looking for the doctor who knows about the pancreatic endocrine tumor in "Hawaii". And also we want to talk about the treatments of this tumor.
Does anyone know about the "high dose indium-111 pentetreotide (octrotide) therapy" or "PRRT(Peptide Receptor Radionuclide Therapy)"???
Any informations are welcome. Thanks. Yoshi

mr steve
Posts: 286
Joined: Sep 2009

Yoshi,

Do you mean NeuroEndocrine tumor? Just make sure you find someone who knows about this type of cancer.

Steve

Yoshi
Posts: 4
Joined: May 2010

Hi Steve
Thanks for your reply.
I think Pancreatic endocrine tumor can also be called a pancreatic islet cell tumor, islet of Langerhans tumor, or neuroendocrine tumor. But I am not sure, so I need the doctor or someone who knows about this type of tumor.

Yoshi

mr steve
Posts: 286
Joined: Sep 2009

Yoshi,

My wife has been fighting islet cell for over 2 years now. I can't tell you a Onc in your area but we here on the main land M D Anderson and OSU both were recommended for us to go two.

Sorry I can't help more.

Steve

keyboardguy1
Posts: 1
Joined: May 2010

I was diagnosed in May of 2009 and underwent a distal pancreatectomy and splenectomy. They removed 2/3 of my pancreas (the body and tail). My tumor was 1.8 cm at the time of surgery, but only 7 mm at time of diagnosis.Luckily, I had no lymph node involvement (they removed 13 for examination). I did however have evidence of perineural invasion which is common in this form of pancreatic cancer. My doctor explained that mine was a low grade tumor with slight but ever increasing mitotic activity. The five year survival rate is about 80% but they emphasize that they are unwilling to call any pancreatic cancer cured.

I am being followed every few months with either MRI or octreotide nuclear scan. So far, I have had no recurrence. Since surgery I have experienced some significant abdominal discomfort but my doctors say that is due to the disturbance of the entire abdominal cavity and the neural network that regulates it. Luckily I am not diabetic but do need to take small amounts of pancreatic enzymes to aid digestion. I had significant setbacks after surgery and eas hospitalized four more times for massive infection and the devlopment of fistula, an leaking enzyme creation of a channel through the abdome. After some terrific scares and one experience with septic shock, I have had no other infection problems. I do have to carry a card in my wallet identifying the fact that I have no spleen and that any significant bleeding or infection is an automatic trip to the hospital.

I consider myself extremely lucky, especially since this is my second round of cancer treatment (vocal cord in 1993). There seems to be a hereditary component in my situation as a significant number of my family have had cancer, died of it, including one uncle who also had pancreatic. My tumor was caught early only because of significant weight loss, and my insistence that I be checked for such a possibility. I urger everyone facing this disease or dealing with an afflicted family member join PANCAN, a support/lobby organization. There is insignificant research into this cancer because it represents a very tiny amount of the total cancer picture. There were 33,000 cases in 2008 and only 31,500 survived more than one year.

My best advice is this. You are ultimately the only one responsible for the level and quality of your medical care and treatment. Do research. Question and get explanations for every medication and procedure. Invole several physicians--surgeon, oncologist, gastro-enterologist and personal doctor or internist. Get multiple opinions. And, first and foremost, only get treated by a doctor or hospital that has immense experience treating this disease even if it means travel to a different state or locale. I was fortunate in having Dr. Joe Levi, chief general surgeon at the University of Miami's Miller School of Medicine and Sylvester Cancer treatment Center. He is one of the top pancreatic surgeons in the country. He acted quickly, decisively and responded to every issue I experienced. He also demands rigorous attention and quality observation by his complete medical staff. At my first consultation after CT and MRI scans, I walked into a room with him, his top PA, his senior resident, his oncologist and pathologist present to create my treatment plan. Accept nothing less.

This disease, even its more lethal form adenocarcinoma is being dealt with successfully in some places, but only the ones who have access to the most experience,latest data and clinical trial information. I hope this somewhat long winded discussion has been helpful to someone. Feel free to reply. I have done and continue to do extensive research about my disease and even continue to question every step of my follow up care. Be optomistic, live every day to the fullest, surround yourself with a support network, join a support group and demand the best possible treatment avilable anywhere.

Love,

Bob Buckler

Yoshi
Posts: 4
Joined: May 2010

Hi Bob
Thank you for your reply.
I am still reserching, and joining some support groups.
But I am sure we have to go to mainland to see the doctors.
His biggest tumor is 8cm, and metastases to lymph nodes. So I don't think he can get surgery. :-(

Yoshi

Yoshi
Posts: 4
Joined: May 2010

Hi Steve
Thanks for your information. I checked MD Anderson web site.
I think we have to go to see the good doctors in mainland.

Yoshi

mr steve
Posts: 286
Joined: Sep 2009

Yoshi,

Check out OSU as well If your going that far a few more miles wont make that much diff. We see A Dr M Shaw, she has been wonderful. there office # is 614-293-8629 My wife has mets to the liver, ovaries, lymph nodes. and we are seeing great results now.

Steve

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