ICAN® One-On-One Advocacy

Connecting the Patient to Specialists

ICAN Program Services are customized for each cancer patient.

In the first example below, ICAN has arranged an appointment between the patient’s surgeon and another pancreas surgeon to discuss the case and the proposed surgery. ICAN staff prepared this fax to brief the surgeon on the case. The reason for the phone call between surgeons is to give the patient a higher comfort level about the prospect of facing one of the most major surgeries one can have – “the Whipple” – a pancreaticoduodenectomy, a life-extending and potentially life-saving surgery in the battle against pancreatic cancer.

For Dr. ________________________

Telephone Appointment with Dr. __________________________ of ____________________________

Thursday, _________, perhaps between 4:30 and 5:00 pm ________________ (specific time will be confirmed

with _____________on Thursday morning)

_____________________________________, Summary of Case

Patient is a 49-year old female, with no known risk factors for pancreatic carcinoma. Lab studies confirmed 5 episodes of pancreatitis which occurred 6 months after patient’s cholecystectomy. An ERCP removed a CBD stone after sphincterotomy. Patient has experienced abdominal pain during these 5 episodes of pancreatitis; weight loss over the last two months of 15 pounds; malabsorption of fat and anorexia (and aversion to eating fat because of worry of consequent pain); no jaundice or pruritus. Patient has been pain-free for the last two weeks although continues to experience persistent abdominal tenderness as well as a persistent gnawing/radiating sensation.

  • Patient’s second ERCP found:
    • 1.3 cm very tight pancreatic duct stricture in the head of the pancreas with upstream dilation proximal to the stricture. The pancreatic duct was brushed.
    • The main pancreatic duct is dilated at 7 mm and the MPD is dilated from the stricture all the way out to the head of the tail.
    • The post-cholecystectomy CBD is 9 mm. Brushings of distal CBD taken as well. Intrahepatic dilation noted. No evidence of filling defects.
  • Biopsies during ERCP taken of ampulla status post-sphincterotomy.
  • Pathology report on ERCP biopsies: are attached.
  • CT scan showed pancreatic atrophy in body and tail; dilated main pancreatic duct; no mass observed, no enlarged head.
  • Pre-operative Labs are normal, except ALP is 170. CA 19-9 was 39.
  • Patient is scheduled on __________________________ for a transduodenal ampullectomy followed by a Whipple depending upon results of intraoperative frozen sections.


Obtaining More Specific Information for the Patient

An Endoscopic Retrograde Cholangiopancreatography is an X-ray of the pancreatic ducts and biliary tree.

Here ICAN tries to get more details for a patient than the ERCP report had revealed by asking the GI endoscopist, who had dictated the report following the procedure, some specific questions that may be able to shed additional light on the differential diagnosis of possible pancreatic cancer versus chronic pancreatitis.

Fax to Dr. ______________________/Please deliver immediately/URGENT

Hi, Dr. ______________________,

I had a few questions about the last ERCP which I wasn’t able to answer from reading your ERCP report. Would you please answer these quick questions for me?

1) Was the pancreatic duct on ERCP smooth or beaded?

2) Did the dilated pancreatic duct have an irregular aspect to its borders?

3) Were the side branches of the main pancreatic duct dilated?

4) Was the pancreatic duct dilated to more than 50% of the anteroposterior diameter of the gland from atrophy of the gland?

5) Was the common bile duct obstructed? Was there a gradual, but not an abrupt, narrowing of the common bile duct?

6) Was my CA 19-9 taken after the last ERCP?

Thanks so much, Dr. ___________. The operation is still scheduled for _______________________.

If you would have your staff please fax back to me at _____________ these answers, that would probably be the fastest route.

Best regards, _______________________

Sample Prep of a Patient Prior to a Neurosurgery Consult

Here are suggested questions for your appointment with the neurosurgeon tomorrow afternoon:

I. Patient’s symptoms and presentation
  1. Have you seen many colloid cyst cases where the patient’s symptoms have involved leg numbness and not headaches or other symptoms? (Note: this sample case presented a benign colliod cyst but in some cases surgical pathology might have determined that the mass was a malignant astrocytoma.)
  2. If the neurosurgeon says that he has not seen many colloid cyst cases with the patient’s presentation, then ask him what kind of brain lesions/masses does he see that are associated with leg (“extremity”) numbness, and are those masses usually benign or malignant?
  3. Does the patient technically have hydrocephalus now? Is she heading toward hydrocephalus? Please explain what hydrocephalus is, and what leads to hydrocephalus. When a patient has enlarged ventricles ("ventriculomegaly" as in mega ventricles!), is that the key indicator for surgery because the patient is symptomatic?
  4. How long do you think patient has had a colloid cyst? Are we talking years, or are we talking months? How quickly does the cyst grow?
II. Patient’s MRI and Differential Diagnosis

5) Let’s discuss the cyst found on the MRI:

a) Is it unusually large in your experience--at what point is a cyst of this size operable? We have read that cysts can be excised when they are only tens of millimeters in size--and that’s much smaller than the patient's cyst.

b) Is there anything about the MRI that you think argues for ordering a second MRI so that it is reviewed by your own neuro-radiologists?

c) How typical for a colloid cyst is the presentation of being “in the midline of the foramen of Monro region?” What is the foramen of Monro, and what does it structurally do for the brain’s functionality? How does the colloid cyst affect the ventricles and the cerebrospinal fluid?

d) What is your surgical experience with respect to colloid cysts? Is it a frequent diagnosis or a relatively rare one? (The neurosurgeon may say that his team sees quite a few cases since they not only get referrals from all over the country but also since diagnostic imaging has improved so much that an increasing number of cysts are being discovered.)

6) Because of the location of the cyst, is there any possibility that it could be some other kind of specific brain mass or lesion, whether benign or malignant? The neurosurgeon will probably tell you that there is a very, very small possibility that the cyst could be something other than a colloid cyst, and he will explain the concept of differential diagnosis--i.e. all the types of brain diseases or conditions that the current problem can turn out to be, and what factors influence the finding of “a” versus “b” versus “c” versus “d.” Ask him whether he has had cases where, going into the surgery, he and his team are convinced that it is a colloid cyst only to find, once they are operating, that it is not at all cystic in nature and the surgical pathologists confirm, after the surgery, that it was not a colloid cyst but something else such as one of the lesions in the following differential diagnosis analysis for colloid cysts:

Colliod Cyst vs. Other Possible Diagnoses
Astrocytoma Meningioma
Central Neurocytoma Metastasis from another primary cancer
Choroid plexus papilloma Subependymal Giant Cell Astrocytoma

7) What does dilatation of the lateral ventricles mean? What would her symptoms be if the dilatation was, instead of being mild which is what the MRI has found, more severe?

III. Compelling Reasons for Surgery so that the Patient has a Maximum Comfort Level; Discussion of the Surgical Technique that Will be Used and How the Patient Can Best Prepare for this Procedure.

8) There seems to have been a difference of opinion among neurosurgeons in the 1990's about how to remove a colloid cyst--whether surgical excision through craniotomy (for example, the Dr. Michael Apuzzo view at USC) or stereotactically (such as the Dr. Friedrich Kreth view in Germany). How has that debate been resolved, and where does your team of neurosurgeons stand? What are the pros and cons of both methods in terms of after-effects, risk of death by virtue of the procedure itself, and risk of not being able to evacuate the entire cyst? Does a craniotomy carry with it the risk of destroying brain tissue? What parts of the brain are near the foramen of Monro that could be functionally impaired during surgery?

9) Does your neurosurgery group use the dual-port endoscopic procedure that Dr. Marvin Bergsneider has pioneered at UCLA?

Please discuss with the neurosurgeon this excerpt from the UCLA website:

At UCLA, the neurosurgeons have been developing a two port endoscopic approach to colloid cysts that maintains many of the advantages of an open craniotomy approach but in addition adds benefits not achievable with a craniotomy. The main benefit is that a “far frontal” approach can be easily used with endoscopy. The far frontal approach provides the neuroendoscopist a direct (endoscopic) view of the roof of the third ventricle – the location where the colloid cyst is attached. This view is generally not obtainable with a craniotomy without destroying possibly critical brain tissue (the fornix) necessary for memory function. Being able to visualize this part of the brain allows the best opportunity to completely and safely remove the entire colloid cyst capsule.

IV. Complications or Side-Effects of any Surgical Removal of the Colliod Cyst

10) What happens if I say "I don’t want surgery!" What are the consequences of not removing a colloid cyst? Do you have patients who say "let’s do watchful waiting and see if this grows to a point where it could lead to a severely compromising situation?" Are there non-surgical "fixes" for a colloidal cyst?

11) What are the after-effects or complications of any surgery? The neurosurgeon may well explain "informed consent" and perhaps give an Informed Consent document to you after he answers all your questions. The Informed Consent is going to be an extremely detailed document.

12) What should the patient do to prepare for the surgery? Please have the neurosurgeon review ALL medications you are currently on, including the specific vitamins and NSAIDs you may be taking.

13) How long will either the microsurgery or the stereotactic procedure take? How much time should we plan on staying in the hospital?

V. Treatment and Follow-up after Patient’s Surgery

14) What are the post-surgical complications that we should watch out for?

15) Whom should we call if we have a problem before or after surgery? Your nurse? Does she have a direct line or cell phone/pager?

16) What is my treatment plan, if any, following the surgical procedure?

17) What are the worst complications you have ever experienced following colloid cyst surgery?

18) If the surgery does not work and the cyst somehow recurs, what do we do?

19) What are the guidelines for release as well as resuming work and normal activities? How soon do we need to return to the hospital for the post-surgery check-up?

20) After I have recovered from the surgery, what do you recommend in terms of "follow-up" time with you and your office? After I recover, will I go for follow-up MRI scans? Every six months?

Sample Questions Outlined for Patient Jack T.
(Prior to Oncologist Appointment)

1. Ruling Out a Bigger Problem

A) How do we determine if I have PCMZL (primary cutaneous marginal zone B-cell lymphoma) and not systemic B-cell lymphoma involving the skin secondarily?

B) How do we know it is not PCMZL-leg type? I understand that "leg-type" PCMZL is far worse. How are we sure it's not on or in my leg? I can’t see anything on my skin, so is that good enough so I don't have to worry?

2. Additional Testing to Confirm the Diagnosis Do you recommend the following:

  • Physical exam
  • Blood chemistries
  • Bone marrow biopsy (to figure out histology, genetic expression, etc.)
  • Imaging studies, beyond the PET scan that you now have, to exclude secondary cutaneous disease

3. Relationship of the PCMZL to Infections

I want to recount my history in the last year after the cruise--could I have had a B burgorferi infection (Europe-based/contact with passengers?) or an H pylori infection or Borrelia? Should I be tested for any of these?

I understand that an infection can be related to PCMZL or herpes simplex virus type I infection or flu or Hep A vaccinations. Let me tell you my own history and the recent episode I had in the last 6 or so months where infectious disease specialists weighed in. Do you think there could have been any relationship between that diagnosis and this new diagnosis? Just curious.

4. Pathology of PCMZL

PCMZL expresses certain things that lead pathologists to say, "Yes, this is PCMZL."

CD 20 (mine expresses 40% to 50%)
CD 79a--not mentioned in the biopsy; presume can only be tested after surgery when more tissue is removed.
bcl-2--not mentioned in the biopsy

and PCMZLs are negative for
CD 5

The above three were not done via biopsy and I assume can only be performed after surgery of a bigger sample of tissue.What should a typical biopsy determine?

Plasma cells show one type of cytoplasmic immunoglobulin light chain expression on paraffin sections (this applies post-surgery only), what does all that mean?What are the worst antigens to express? Is there any clue on the nature of the PCMZL based on the biopsy’s antigen expression results?

5. Meaning of “Indolent” and “Low-Grade”

PCMZL is an “indolent” or “low-grade” lymphoma.What do those terms mean in terms of treatment?

6. Malignant Transformation of PCMZL into Something Far Worse

Can PCMZLs transform into more aggressive B-cell lymphomas that could be lethal?

7. Recurrence in the Skin or Elsewhere

PCMZL has a tendency to recur in the skin but its spread to non-skin sites is apparently very rare, do you agree?

8. The Oncologist’s Experience with the Disease Progressing to Other Sites in the Skin or Non-Skin Sites

Have you ever had a patient where PCMZL has spread to non-skin sites?

9. Prognosis

I have read that the PCMZL prognosis is excellent with a five-year survival close to 100 percent.What should I be looking for over the next five years, between the appointments with you where your office will be aggressively monitoring me with your own lab tests? In other words, what symptoms or factors should I be paying attention to that could clue me in to a problem that we need to address?

10. Do We Proceed to a Full Surgery of the Skin Lesion?

Would you expect a full surgery of the skin lesion to yield more detailed CD expression results? If we go to surgery on this, can you ask for the most comprehensive genetic expression analysis and immunohistochemistries?

11. Surgery or Radiation Therapy (and Ask for a Referral to ___________________)

I have read some literature saying treat patients with a solitary or few lesions with radiotherapy (either 3000 to 4000 rads) or surgical excision. If you recommend radiotherapy, I would like to be referred to _________________________________ will this be a problem?

12. Rituxan Therapy Down the Road

What is your experience with prescribing Rituxan (the anti-CD20 monoclonal antibody)? Can it be prescribed interlesionally?

13. Drug Resistance Studies Ordered Right After Surgery

Can you also ask for drug resistance studies to determine whether my PCMZL would ultimately be receptive to Rituxan?

14. Chorambucil Therapy–Do I stay on or do you switch me to something else?

We have read that patients with multifocal skin lesions get under the skin administration of interferon-alpha or oral chlorambucil. I guess this is a good thing that Dr.____________________ prescribed the chlorambucil since there could be multifocal lesions not yet discovered? Would you keep me on the chlorambucil or change the prescription to something else?

15. Steroid Therapy

Do you treat small and superficial lesions with topical or intralesional steroids and treat only the most infiltrated lesions with radiation?