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
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?
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?