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Pet Scan Update: Sarcoidosis Dx

Maur1966
Posts: 23
Joined: Oct 2004

Hello,

I've posted here before about "activity" on two pet scans following 6 cycles of abvd. The activity seemed to increase rather than decrease with each Pet Scan. So, of course I was mentally preparing for a stem cell transplant. HOWEVER, I had a biopsy of the mediastinal nodes which revealed "Sarcoidosis", no signs of lymphoma. Sarcoidosis can cause a pet scan to light up related to the inflamation. Has anyone ever experienced Sarcoid? I do not have major symptoms at present and I feel great to be finished with chemo. Just wanted to update. Thanks, Maureen

mlupplace
Posts: 2
Joined: Jul 2005

Hi Maureen, I am a Maureen too, and will celebrate 23 years of survivorship from stage IIB Hodgkins next week on my 50th birthday. Other than hypothyroidism which is stable on thyroid meds, i have grade 2 Aortic Valve Stenosis, a latent effect of the mediastinal irradiation. Fortuneately, I am asymptomatic at present, able to enjoy bike riding and moderate exercise without getting short of breath. My cardioligist and oncologist are strong beleivers in Chinese herbal medicine to strengthen the immune system and halt the progression of my heart valve problems. Incidentally, i went on to become a certified Oncology nurse, now practicing in my 10th year.

Glad you are lymphoma free. I have not heard of sarcoidosis following treatment, this is news to me. Check out www.TheCancerMonument.org You deserve to have your name inscribed.

Another Maureen who survived Hodgkins....

lhodnet
Posts: 62
Joined: May 2004

I have heard that sarcoidosis and hdl can present themselves similarly.

there is an msn group for sarcoidosis - just go to the msn groups and then search for sarcoidosis - I found it prior to being diagnosed with hdl, but found that group to be VERY VERY helpful and knowledgeable.

lisa

arica
Posts: 12
Joined: Aug 2005

HI I ALSO HAVE JUST HAD A PET/CT SCAN I'M VERY CONCERNED THE DR SAID NOT SURE WHAT IT IS.SWOLLEN NODE MAYBE. I HAD A BMT BECAUSE I WAS ONLY IN REMISSIN FOR 5 MOS THE FIRST TIME I HAD CANCER. MY FIRST PET WAS CLEAR. 3 MOS AGO. I FEEL MY BEST RIGHT KNOW. NO SIGNS. BLOOD WAS GOOD JUST A BIT NERVOUS. BIOSPY TOMMOROW.THANKS NEVER HEARD OF SARCOIDOSIS. WHAT IS THE TREATMENT?

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