Testing for Burkitt’s Lymphoma.
By:(A Burkitts lymphoma patient/survivor)
As you are waiting to be diagnosed and treated you are going to learn of a lot of things you probably never heard of before, words, acronyms or phrases like LDH, lumbar puncture, PET scan, CT scan, and bone marrow biopsy to name a few. We are going to discuss these in detail below, because some of these or all will be used in diagnosing, monitoring and the routine maintenance of a Burkitt’s lymphoma patient including me.
The Diagnosis of Burkitts lymphoma comes in the form of a biopsy. A Biopsy is basically taking a sample of the suspected tissue and or cells and putting it through an array of tests at a laboratory to see what it is. There are several different types of Biopsies such as endoscopic, needle biopsy and surgery to name some of the the most popular. I was diagnosed by biopsy after having found a mass with a chest x-ray. Some biopsies are invasive some are not. Your particular case will depend on what you end up with. I recently had a positive PET scan after being in remission for over two years. The spot that lit up was in my Tonsil. The Tonsil had to be extracted in order to see what was going on. It turned out to be inflammation, but the only way to know for sure was with a biopsy. You don’t want to be guessing with Burkitts, even though I was told that Burkitts has the consistency of cream of wheat and surgical removal of its tumors is not generally a option, still the only way to know what you have is to get an adequate sample to the proper people so they can test it.
LDH stands for Lactate dehydrogenase, it is a enzyme that resides in many body tissues that include skeletal, brain and blood cells.
This test is often done to measure tissue damage in people that are suspected to have issues that would cause damage which includes Burkitts lymphoma. I actually went to the ER several times and they said the first range of blood tests they performed were all within normal ranges including LDH which are normal between 105-333 IU/L (international units per liter) then a day or so later my LDH jumped to over 333. I don’t think they could have diagnosed me on LDH alone, but it may have rang a bell had it been elevated during the first round of testing. If your LDH is high it can point to other conditions besides Burkitts, but it is a good indicator that something is wrong.
Lumbar Puncture (Spinal Tap) and Intrathecal Injection
Lumbar puncture means just what it says, to puncture the lumbar area with a needle. This is done to test your spinal fluid to see if you have issues with it. Instead of explaining how it is done the attached video is a very good representation of how it is done. I was told while I was having one of mine done that if the fluid isn’t clear when it comes out there is probably something wrong. During the first go at my lumbar puncture the ONC missed 8 times and finally quit after hitting my spine. He tried again the next day after getting me in a better position, he then used a reference point for the next 8 which went so much smoother, so bending over as far as you can, staying still and using proper measuring points is all so important.
Bone marrow biopsy or aspiration
If you are suspected of having Burkitts or do have Burkitts they are more than likely going to want a sample of your bone and bone marrow. This procedure is painful, but bearable and chances are you will only have to do it once. I know mine was painful, but I made it through it and so can you. Once again we found this video that represents this pretty well. They can’t numb the bone.
PET (Positron Emission Tomography) is a 3 dimensional picture view of functional processes in the body. It is perhaps the best imaging test they can use for detecting Burkitts and seeing how Burkitts is reacting to treatment.
Problems with PET scans. Rituximab is a popular chemotherapy drug. (Rituxin) When it is used there are instances of false positive scans with Burkitts patients according to this article. http://annonc.oxfordjournals.org/content/20/2/309.full
I am not a doctor and I do not work in the Medical field, what I am is a Burkitt’s patient that has acquired some knowledge from reading countless amounts of literature about Burkitt’s Lymphoma. I am not here to give you medical advice, but am here to voice what I have learned about this horrible cancer from my own experience with it. We encourage you to seek medical advice or to ask questions for the treatment of Burkitt’s from Oncologist’s or the appropriate medical professional after all they saved my life. I learned a lot about Burkitt’s, more than I ever cared to know or ever wanted to know.
My own personal experience with Burkitt’s involved each and every one of these tests.