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Anyone use Dr Elaine Jaffe for second opinion pathology?

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

New here. Anyone ever have biopsies sent to Dr. Elaine Jaffe at NIH?  How long did you wait for a report?  I'm trying to get answers.  NO ONE can seem to make sense of my biopsies....all the symptoms for 2 years...including "off" blood work and B symptoms. Also, biopsies in not so good places....

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

You can read my other response in the other thread but yes I did. It took about 2 weeks maybe a few days longer. I think she does not just use the slides sent but takes part of the tissues and does her own slides. This does take sometime . My Oncologist called there at least 2 or 3 times to push for results. I think that helped. That is one of the reasons he is my Oncologist. He seemed to take a personal interest in helping me get the diagnosis. I was anxious just like you. Just wanted answers. I pray you get them soon. If you have not already googled Dr. Jaffe she is an incredible lady. I made some deductions from some of what I read and appears she may be in her 70's and still working to help people with Lymphoma. Keep us posted.

Sandy Ray

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

Thanks for your reply. It's almost 3 weeks.....did she fax results or does the oncologist have to call? I would think she faxes them. Prayers appreciated. I have two teenagers and a four month old. So tired of being sick.

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

he called but they faxed the report. Never seen hair loss as sign of Lymphoma but praying they at least give you a yes or know and you can get some kind of diagnosis.

Sandy Ray

po18guy
Posts: 993
Joined: Nov 2011

If you have had all of this for two years, plus "B" symptoms, I think that your condition would be extremely poor by now - perhaps beyond posting here. Even in the case of an indolent lymphoma - which could not hide at that point. If it were an aggressive lymphoma, I think you would be hospitalized, at best. Lymph nodes are not cancer detectors and they are not even involved in all lymphomas. They indicate that your immune system has either launched a response to some unknown pathogen, or is malfunctioning and attacking its own body. There are 80 or so known autoimmune diseases, with many times that number being unknown at this point. Most of them can mimic lymphoma and other cancers, including "B" symptoms. 

At my second relapse, some of the best pathologists on earth could not decide if it was cancerous or not - and they knew exactly what they were looking for. The decision was made based on my prior cancer history. If I had no cancer history, they would not have called it lymphoma. Even then, it was not the same type I was originally diagnosed with. It is a diabolical disease. 

Miracle3's picture
Miracle3
Posts: 17
Joined: Jul 2017

I see what you are saying. One of my nodes came from over my left collarbone. It was necrotic and my onc  said that his patients presenting with necrosis have all had Hodkins....it's a hard node to get a"read" on apparently.. I also sent her two additional biopsies which were read as two different types of benign  processes but she said she wanted them anyway for her own interpretation.  I was pregnant through some of this and fainted quite often, gained only 12 pounds, and had 15 hrs a day of hard contractions. I know bloos work doesn't diagnose lymphoma but my initial work up included anemia, high LDH, and my hsCRP was astronomical. I initially lost 16 pounds in two weeks. I've had ANA's done and they don't see anything autoimmune.  As of now I eat about 700 calories a day and my body HURTS.  Like the flu. I barely function during the day. I've lost about a third of my hair.  Onc mentioned Kikuchi disease but those symptoms are us self-limited  to 3-4 months. I just want to feel better, that's all. 

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