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A tale of two T-cells
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A disclaimer: I'm not a pathologist, and I doubt anyone reading this is a pathologist either. I don't assume that we will all understand pathology by the end of this blog. I'm merely using a pedestrian example to make an important point.
If I harp on some things more than others over at the lymphoma boards for supportgroups.com, there's generally a reason. Such is the case with the terrible difficulty faced by pathologists in making an accurate lymphoma diagnosis, and because of this, second opinions are an absolute MUST.
It's not enough for someone to peer through a slide and say "lymphoma!" In fact, in lymphoma, this is so inadequate as to be the same as doing nothing at all.
In lymphoma, unlike other cancers, the stage of the disease often plays second fiddle to the classification subtype. So when a swollen lymph node biopsy is examined, the most important question is … what subtype of lymphoma does this patient have?
Get it right, the patient receives the most appropriate treatment.
Get it wrong, and the patient is subjected to unnecessary, ineffective, and harmful treatments. Valuable time is lost.
MISDIAGNOSES BY THE NUMBERS
How often do they get it wrong? There is no hard data, but one estimate published in a respected journal some years ago put the annual number of misdiagnoses for all cancers at 150,000.
For lymphoma, B-cell lymphomas are generally considered to be much easier to accurately diagnose. However, according to Scott Kogan, MD, associate professor of laboratory medicine at the University of California-San Francisco, "In the world of hematopathology, T-cell lymphoma is the most difficult diagnosis."
In fact, in one study [1] when pathologists considered the morphology (shape, characteristics) of a T-cell lymphoma, their rate of agreement was just 34%. Using additional testing, the agreement rate went up to 76%.
SLIDE VS SLIDE
Behold, slides from two biopsies showing two distinct T-cell lymphoid cancers with very different treatment protocols and very different prognoses.
A is T-Cell Prolymphocytic Leukemia (TPLL), categorized as a peripheral t-cell lymphoma. Extremely rare, atrociously aggressive, and thoroughly deadly. Median survival time from diagnosis is seven months.
B is Sézary syndrome (SS), an advanced, chronic form of cutaneous t-cell lymphoma that, depending on when it's found, can be managed and treated (and rarely, cured).
Believe it or not, despite looking virtually the same to our eyes, these two t-cell lymphomas are unlikely to ever be confused with one another because a constellation of clinical and laboratory factors—not just a glimpse through a microscope—determine diagnosis, from physical exams to symptom check to laboratory techniques like flow cytometry, phenotyping, immunohistochemistry, and more.
These techniques tease a lymphoma cell into giving up its secrets. You don't need to understand how they work, what they do, nothing. But you do need to see to it that they're performed.
GOING THE EXTRA MILE
Going the extra mile in lymphoma diagnosis should be the norm, but that's not always the case. What if you had early-stage SS but were misdiagnosed as having TPLL? You would undergo a number of fairly worthless and toxic treatments, spend lots of time in and out of hospitals, and measure your life in months.
Sure, you'll be happy and surprised to find yourself still alive a year later. But that year has not been good—not just all the needless treatments: your SS has been progressing unabated. You've lost valuable time in getting to the SS early, and now your prognosis is poor, when it would have been good a year ago.
PAYING THE ULTIMATE PRICE
There is a price to pay for a misdiagnosed lymphoma, and it always comes out of the patient's pocket in one form or another.
If an oncologist gives you a diagnosis of a T-cell lymphoma that hasn't been properly reviewed, they should urge a second opinion, especially if the original diagnosis was not made by a blood pathologist or a similar specialist at a designated cancer research center.
If they don't, find another doctor.
[1] Zucca et al. (September 1998). "Management of rare forms of lymphoma." Curr Opin Oncol 10 (5):377-84. PMID 9800105.
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I noticed there is no
I noticed there is no evidence-based research to substantiate why bone marrow biopsies are done 4-8 weeks after treatment. Try doing a search and I don't think you will find any info. I have been looking for days and haven't found anything
My thoughts
1)There are many new drugs on the market and the half life of those drugs differ so how can you arbitrarily say that everyone should get a bone marrow biopsy 4-8 weeks after their last chemo treatment? I read that Rituxin for example can be detected in the blood for 3 months.
2) If a bone marrow biopsy is done too soon I would imagine you can get a false negative. This might serve the pharmaceutical companies well by making it appear as if their drugs are more effective than they really are. However this is very dangerous for patients and is not in the best interest of science. Treatment failure versus relapse would require different treatments.
Questions I have are:
1)What conditions medications or factors would influence a bone marrow biopsy result?
2) What would cause a false nagtive or a false positive result?
3)What are the current and past rates of "relapse". And are they really "relapses" or are they treatment failures incognito?
4) Have there been changes to definitions or new terms added since new drugs have come on the market? (relapse, response, overall survival etc) Drug comapnies are notorious for twisting words. I remember when the hepatitis B vaccine came out years ago. The vaccine wasn't working for a lot of people. At first the drug company said the vaccine did not work because of smoking, or obesity. Then when that couldn't fully explain the reason for other non-responders, changes were made to the laboratory reference ranges.....lower titers conferred immunity. Now they are noticing that protection from the vaccine isn't lasting and boosters are needed in some cases. Initially they did not recommend testing post vaccination to verify immunity so how will we ever know if the vaccine ever worked or if it simnply didn't last? and If it didn't last, how long didn't it last? Same thing happened with the measles vaccine. Years ago we were never tested post vaccination to make sure the vaccine worked-we just blindly accepted that it did...well at least until the resurgence of measles when we finally woke up and decided a booster was needed. Seems like we are all unconsenting post-marketing research participants
Unless we scrutinize things a little more, we will be caught with our pants down and will become desperate when we realize all these new drugs aren't what they are cracked up to be
Excellent comment, I'm sorry
Excellent comment, I'm sorry I didn't see it sooner. Your point illuminates one of the creepiest aspects of new drugs and of published statistics: bias. For instance, Publication bias, which is what you're pointing out, skews results. So does detection bias. If a cancer is detected early and the patient undergoes treatment and still dies from the disease, it'll appear that they lived significantly longer than others.
Regarding the bone marrow biopsy at 4-8 weeks, from what I can tell looking at the NCCN's guidelines for DLBCL for example, the biopsy is done at the end of treatment and following all scans, and only if the PET/CT scan is positive, in which case the biopsy would serve to re-stage the patient and determine second-line therapy. In an aggressive disease, 4-8 weeks makes some sense, but I get what you're saying, and it may be that 4-8 weeks is nothing more than something established thanks to clinical experience.
Finally, terminology regarding responses etc for lymphomas is supposed to conform to international criteria established in 1999 but that's only for clinical research.
Ross
Excellent comment, I'm sorry
Excellent comment, I'm sorry I didn't see it sooner. Your point illuminates one of the creepiest aspects of new drugs and of published statistics: bias. For instance, Publication bias, which is what you're pointing out, skews results. So does detection bias. If a cancer is detected early and the patient undergoes treatment and still dies from the disease, it'll appear that they lived significantly longer than others.
Regarding the bone marrow biopsy at 4-8 weeks, from what I can tell looking at the NCCN's guidelines for DLBCL for example, the biopsy is done at the end of treatment and following all scans, and only if the PET/CT scan is positive, in which case the biopsy would serve to re-stage the patient and determine second-line therapy. In an aggressive disease, 4-8 weeks makes some sense, but I get what you're saying, and it may be that 4-8 weeks is nothing more than something established thanks to clinical experience.
Finally, terminology regarding responses etc for lymphomas is supposed to conform to international criteria established in 1999 but that's only for clinical research.
Ross