Mast Cell Disorders Forum - Words Used in Asking for a Biopsy That Includes Search for Mast Cells

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Words Used in Asking for a Biopsy That Includes Search for Mast Cells (Read 2393 times)

Futurehope

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Clermont, Florida

Words Used in Asking for a Biopsy That Includes Search for Mast Cells
10/13/11 at 15:10:53

I've seen mentioned on this forum that if something is biopsied, like the colon, the stomach, the esophagus, the bladder, (and in my case, my gallbladder was looked at).....

in what words exactly do you suggest to the doctor who did the surgery that you want your specimen to be searched for mast cells?
Will they know how to do it and what you are asking?

Are my old tissue samples still present and useful for microscopic study? Or, do I need to pursue fresh biopsies? Of course, I cannot have my gallbladder removed again in order to have a look, LOL.

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lynda51

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Re: Words Used in Asking for a Biopsy That Includes Search for Mast Cells
Reply #1 - 10/13/11 at 18:51:48

Hi Hope,

I think I am the only crazy person who is awake all night and that's when I visit this site the most!! Cheesy

I am not sure I know your "story" but I hope I can help in answering your question. I am quite new at this but Dr. Afrin is my doc and this is what he wrote to the doc that "takes care of me close to where I live."

"""I believe Lynda was very close to
diagnosis during her 5/24/10 bidirectional endoscopy, but the
gastroenterologist unsurprisingly wasn't thinking about the possibility
of mast cell disease and therefore didn't instruct the pathologist to
evaluate the biopsies for such, so only routine staining was done and
(as is very typical in MCAS) there were no significant findings on such
staining. However, in my experience, it is likely that evidence of the
disease is detectable in one or more of those biopsies. Therefore, I
would appreciate it if you would please ask your Pathology Department to
pull all of the remaining blocks from those biopsies out of their
archives and prepare fresh cuts (again, from each and every block) and
evaluate them for the presence of mast cells beginning with CD117
staining. (If they want to go on and also do Giemsa, tryptase, and
toluidine blue, they can be my guest, but let's start with at least
CD117.) If they find more than 20 mast cells per high power field in
one or more fields examined in one or more biopsies, then we are a good
bit closer to establishing the diagnosis."""

I hope this helps....and yes...mine are well over a year old and they should still be able to re-stain them! I do not know if you have a mast cell doc or not, but sometimes you can have your specimens sent to him/her and they will do the testing if your lab is not comfortable doing it.

I wish you the best and hope you don't have to have the biopsies taken again.... Embarrassed

Take care.....Lynda

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Futurehope Mentor Offline Posts: 357 Clermont, Florida	Re: Words Used in Asking for a Biopsy That Includes Search for Mast Cells Reply #2 - 10/14/11 at 02:11:14 Thanks, Lynda. Is Dr. Afrin the doctor in Charleston SC. What is his first name? Is it Lawrence? I'll probably try to see him. Everyone who has seen him feels like he is interested and knows what tests are needed.
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kimtg68

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Alabama

Re: Words Used in Asking for a Biopsy That Includes Search for Mast Cells
Reply #3 - 10/14/11 at 02:17:08

I, too, saw Dr. Lawrence Afrin at USMC in Charleston, South Carolina. I'm glad that I saw him so he could run the initial set of tests. Now I have a local oncologist (at Afrin's request)that I contacted on my own and he is willing and excited to work with Afrin to learn about mast cell disorders and to treat me. I am still waiting on ALL my test results but regardless of the results I know that going to see someone who know's about this disease was well worth my time and money. There is approximately a three month wait to see him but if you schedule an appointment with him, CALL as often as you can checking on cancellations and you may get in sooner.

I wish you luck!

Kim

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lynda51

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Re: Words Used in Asking for a Biopsy That Includes Search for Mast Cells
Reply #4 - 10/15/11 at 19:02:04

Yes Hope, Dr. Afrin is the Dr. whose practice is at the Hollings Cancer Center which is located at the Medical University of South Carolina. His first name is Lawrence.

Like Kim, I too have a local oncologist/hematologist who treats me acutely. Since I am a breast cancer survivor, my own oncologist agreed to take my case. How fortunate am I? To have two great doctors who are willing to work together! Hopefully because I live in the Midwest, we can create some interest here for a doc to take mast cell diseases as a primary interest. I know we all want that all over the world.

I agree with Kim, Dr. Afrin is well worth the wait! He did have a cancellation after he had just gotten all my records, so I was able to see him within a week. When you call for an appointment, I would encourage you to start the process of having as many of your records sent to him as you possibly can. Dr. Afrin will go through absolutely everything!

Since my appointment with him, he has sent all his recommendations and all possible connections of the disease to EVERY ONE of my specialists. I think that is amazing. He's a great teacher and he will email you with answers to any questions you have and will work with any physician that will reach out to him. He seems very passionate about the study of mast cell diseases.

If you need any more convincing, I am sure between Kim and I and a few more of Dr. Afrin's patients, you will get many positive responses.

Hope this helps. Keep us posted on your progress! If you need the no. at the Hollings Center, just send me a PM and I will send you the info.

Take care...hugs to you, Lynda

p.s. I am so glad to hear you have a local oncologist to work with you Kim! That can be more challenging than getting to see a mast cell specialist! Keep me posted on your test results as well. I would like to know how you are doing if that is ok.

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Lisa

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Volta Redonda, RJ Brazil

Re: Words Used in Asking for a Biopsy That Includes Search for Mast Cells
Reply #5 - 10/16/11 at 15:14:06

The testing should include the following markers:

tryptase
CD 117 - Ckit
CD 2
CD 25
CD 34
CD 45

They should be stained with either Giemsa, toludine blue, or tryptase with tryptase being the best of the three.

These are the basic markers and they look at other cells beyond just those of the MCs.

Lisa

Don´t forget, there is so much more to life than being sick!

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