Help with insurance - Richters or a parallel disease?.

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Hi All

Two or three months ago I posted after I had a PET scan that

showed bright nodes.

I thought switching to a new heme/onc would help. Have

discovered that he put me thru a BMB and a fine needle

aspiration of a node in the abdomen and did not order the

Fish for tp53, nor did he order the sequencing of Ighv

genes. Both were recommended by Dr. Hamblin to determine if

I have a transformation to Richters or a parallel disease.

However, I did not get the info to him prior to the

biopsies. A couple of weeks later the lab said it could not

perform either test on the material on hand.. The biopsy was

about 2 months ago. My onc agreed to apply for approval by

my Medicare Advantage plan to see a Cll specialist at

MD . When it was denied, he did not think an appeal

would make a difference because of the poor track record of

my insurer. He added that I was " doing well " and did not

appear to have Richters. (All blood work has been

consistently normal since FR in 08.) He said the DLBCL

might be a clone of Cll. Before I presented him with the

necessity of doing Ighv and tp53 he was ready to start

treatment with CHOP. I declined and asked for a referral to

MD prior to a decision on treatment options. No

action on my onc's part to appeal. My PCP is in the process

of writing the *appeal* and she needs convincing

information. I am helping her. Can you help us? Here are

questions: What are the tests that can be done at MD

that cannot be done by an immunology reference lab?

Is it reproducability and reliability and differences in

procedures?

A Genentech article " Diagnosing DLBCL " Table 2, showing

immunophenotyping that is comprised of IHC and flow

cytometry with additional IHC analysis. There are subtypes

of DLBCL. Would a cancer center like MDA both distinguish

between Richters and a parallel disease, and at the same

time diagnose the subtype of DLBCL if it turns out I do not

have Richters? The article mentions a fine needle

aspiration (FNA) or core needle biopsy is generally not

suitable for the initial diagnosis of lymphoma. An

excisional or incisional biopsy of a peripheral lymph node

is required for all tests mentioned in the article. I

assume a cancer center would follow Genentech's procedure

for diagnosis?

Somewhat confused about types of materials required for

various tests. After finding bright nodes in a PET scan

what kind of biopsy material was required for

distinguishing between a transformation to Richters and a

parallel disease. I don't recall what kind of sample was

necessary for a FISH and the sequencing IVhg genes? In my

case neither was ordered by my onc, so it is " moot " but had

I gone to a cancer center like MDA what material would have

been used for relevant tests? There is mention somewhere

that in certain tests, the bone marrow does not always

correlate with peripheral blood. Which ones?

Thanks for any enlightenment on the subject. I have to

convince my insurer that a cancer center has options that a

regular hospital does not have.

Best wishes for research progress and good health to all.

Marilyn Barbera