Ottawa 2014

Ottawa Patient Education Day


Introduction – Jackie Herman, President

A B Zss Of NETs – Dr. Goodwin

Strategies in the Management of Neuroendocrine Tumors – Dr. Tsvetkova

Emerging Trends in Neuroendocrine Tumor Management – Dr. Ezzat

How Surgery Fits Into the Care and the Challenges for NETs Patients – Dr. Law

Nuclear Medicine in Diagnosis and Therapy of Neuroendocrine Tumours – Dr. Beauregard


Webcast Questions from Ottawa Patient Education Session

Diagnostic Related Questions

1. If a pathology report says well differentiated benign tumor then can I believe it’s not cancer ?

The majority of NETs are described as well-differentiated. Their grade and stage help predict how they might progress. Continued surveillance in a structured plan with the treating physician team is indicated.

2. Does NET cause fibrosis? If so, how should we be monitored for this?

Yes, NETs, particularly in the abdomen and those which produce serotonin are more likely to cause scarring and fibrosis around their deposit sites. 

Treatment-related Questions

1. Which of the therapies discussed in the afternoon session are most relevant for a diagnosis of poorly differentiated NETS ?

Depending on the grade and stage, poorly differentiated NETs often require systemic therapies including those discussed such as chemotherapy.

2. With chemo, radiation and surgery can Neuroendocrine cancer be cured ?

Neuroendocrine cancers can be controlled with varying degrees of success. Strict cure is difficult and rare but not impossible.

Some of the chemotherapy regimes your oncologist may speak to you about include Cisplatin plus etoposide, CAV (Cyclophospamide, Doxorubicin, and vincristine), or Temozolamide and Capecitabine.

3. I had a NET located in front of my left tonsil and also on the left side of my neck and am not able to find out much information concerning my cancer. Where can I find more detailed information?

Neuroendocrine tumors of the neck are frequently referred to as paraganglioma. Searching under this term can help point you to some potentially useful information.

4. Can the new CAPTEM chemotherapy regimen be used for someone with a poorly differentiated tumor in the bile duct which has metastasized ?

The CAPTEM chemotherapy combination is one of several options used for treating poorly differentiated NETs. However, you may also want to discuss the more classic chemotherapeutic agents such as cisplatin and etoposide with your treating physician.

5. I had a non-functioning pancreatic NET removed two years ago. I have an MRI every six months I have a GP and the surgeon who removed the tumor as my team. Should I be doing any more than waiting ? The tumor was about 2 cm.

In the absence of any worrisome features, imaging studies such as an MRI and blood testing are typically performed on a regular basis at least for the first five years after surgery. Beyond that, other schedules should be tailored based on your circumstances in consultation with your treating physicians.

6. Is temozolimide/capecitabine chemo the best option for a tumor around or near the mesentery artery ? I have been told it is not resectable. The primary was in the small intestine and was resected ten years ago and a biopsy showed positive lymph nodes and liver NETs.

There is not one superior combination chemo. The choice depends largely on the tumor type, grade, stage, and degree of progression following surgical resection. Temozolmide/capcetabine reflect one of the newer combinations often reserved when other options have been exhausted or not deemed appropriate.

7. Dr. Law, you say it is important to have a team on a case. How do I know if there is a team beyond my surgeon?

Have you ever met a Medical Oncologist? Radiation Oncologist? RN? Pathologist and Radiologist are involved by definition. Sometimes there is need for dietician, pharmacist…

Side Effect Management Questions

1. The most commonly experienced symptom of NETS is diarrhea. We know that NETS diarrhea is not the same as regular diarrhea. None of the doctors appears to be thinking about this and it is such a terrible part of the disease to deal with and manage. Are there specialists dealing with NETS diarrhea? Should there not be someone who deals with it, the Nurse Practitioner or someone else?

Diarrhea can be related to the production of a hormone from the tumor, the resection of pancreatic tissue and loss of enzymes, or drugs which interfere with normal gall-bladder/intestintal absorption. It is a problem often handled by a team of physicians which can sometimes include a gastroenterologist, dietician, pharmacist.

PRRT- related Questions

1. How effective do you find PRRT in treatment?

PRRT is an efficacious treatment in about 2/3 patients, in terms of disease stabilisation or partial regression, and in terms of symptoms and quality of life improvement. It does not cure the disease. It is not efficacious in about 1/4 to 1/3 patients.

2. Can a person be taking octreotide shots and still get on a PRRT clinical trial ?

Yes, but these must be synchronised with the PRRT, which means octreotide injections may sometimes be delayed by a few weeks. In the case of significant hormonal symptoms, short-acting octreotide can be administered if necessary, without interfering with PRRT.

3. When will the multicentred PRRT trial come to Toronto ?

The date is not known yet. Possibly late 2014 or early 2015.

4. What are the inclusion criteria for the PRRT trial ?

The disease must be positive on Octreoscan. In general, approved available and reasonable therapeutic options should have been tried before PRRT.

5. What are the exclusion criteria for the PRRT trial ?

These may vary from centers to centers. In general, patient with severe organ dysfunction (e.g. liver, kidney, blood counts) or very poor performance status may not be candidate. But, this has to be assessed on a case-by-case basis.

6. Would a person who has had a liver embolization be excluded from the PRRT trial ?