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Can someone explaine to me about follicular dendritic cell sarcoma/tumor?
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Follicular dendritic cell
Follicular dendritic cell (FDC) sarcoma is a very rare type of cancer. It was only recently described in medical literature in the last 25 years or so, which explains why there's so little to be found about it. It has been diagnosed almost exclusively in middle-aged adults, and there seems to be a slight prominence among women.
FDC sarcoma typically first appears in the lymph nodes, in what are known as antigen-presenting cells (cells that trigger an immune system response when an antigen appears) and it has been described as a rather aggressive tumor with "significant recurrent and metastatic potential." It is however treatable with both chemotherapy, surgery, or both.
Because FDC sarcoma has only recently been described, the place you may find the most information is in experimental research journals. Unfortunately, those journals aren't written for anyone but other clinicians and doctors, and are difficult to understand.
I did a quick search for FDC sarcoma at Cancer.org and found nothing, surprisingly. You can try searching at www.jeccr.com, and take what you find there to your doctor or health care provider for a better explanation.
Thanks Ross for the
Thanks Ross for the information. My mum, 78 years old, diagnosed as FDC sarcoma last October. The main symptoms are coughing, periodic chilling and fever like Malaria. My mum did not take chemotherapy until this March. Currently she is waiting for 3rd chemo. Her enlarged lymph nodes got reduced after first two chemo. Her main symptoms came back again well before her next chemo. We are worried whether the chemo is effective or not. I hope you can support me and update me any information you know. Thanks kindly.
Just to let you know, I've
Just to let you know, I've been reading clinical studies about FDC sarcoma over the last few days trying to get a better handle on it for you. It's so rare, and the research is a bit spotty.
Do you know what chemo regimen is she on?
She is on CHOP but it's lower
She is on CHOP but it's lower level. Thanks Ross.
My husband, age 53, was
My husband, age 53, was diagnosed with this last Fall. His appeared in some cervical lymph nodes. He had two surgeries to remove the tumor. We were fortunate enough to find an oncologist at M.D. Anderson Cancer Center in Houston, Texas who has experience treating this rare cancer so we have been driving from Kansas City to Houston for her appointments. Her recommendation for treatment is: surgical removal if possible, chemotherapy, then radiation. He has completed the chemo and radiation at this point and we return to Houston in two weeks for the after-treatment PET scan.
T Smedley
Hi, I'm wondering if you
Hi,
I'm wondering if you would give me the name of the MD Anderson oncologist who treats follicular dendritic cell sarcoma. I too, have this and have been to UCLA, to no avail. Please help me.Thank you! Brenda
Brenda, I rarely check this
Brenda, I rarely check this site so when I saw your post I was concerned you had posted this quite a while ago. I'm happy to see your question was posted recently. Please email me at hottubdiva@hotmail.com and I can provide you with all the information we have and the name of our oncologist at MD Anderson. We found ourselves totally relieved after we met with her the first time since it was the only person we had met with who knew anything about this rare cancer. We've been in your shoes and would be happy to help in any way we can. Teri Smedley
T Smedley
Thank you, Teri, for
Thank you, Teri, for responding! Looking forward to hearing from you! Thanks again! Brenda
Hope both patients make a
Hope both patients make a full recovery.
No recent posts I see. I
No recent posts I see. I would like an update. FDCS was just found in my right tonsil. I had tonsillectomy and am now waiting to have a PET Scan. I am trusting God for the complete restoration of my health.
PegSue, I hope your PET scan
PegSue, I hope your PET scan is an answer to your prayers! This is such a rare cancer that our local (Kansas City area) oncologists had never treated this. In fact, one of them told us he didn't consider this an actual cancer. I think that doctor was looking at the very early information about this cancer rather than more recent articles that recognized the potential for recurrence or mets. My husband's PET scan verified that his tumor was only in his lymph node, which was good news. Even with that information, once we met with the oncologist at MD Anderson Cancer Center in Houston, TX we were told that the recommended treatment was chemo followed by radiation. I'd be happy to share some information with you if you'd like. Email me at: hottubdiva@hotmail.com.
Teri
T Smedley