My uncle was diagnosed in February 2015 with leptomeningeal carcinomatosis (with adenocarcinoma of the lung as the primary). He had no prior history of cancer, so this was quite a shock as you can imagine. He had presented with lower back pain and he couldn't empty his bladder. After a cortisone injection and a massive blast of steroids, he then had severe weakness in his legs. He has no other neurological symptoms.
MRI shows "diffuse leptomeningeal enhancement consistent with leptomeningeal carcinomatosis within the thoracic and lumbar spine. Intracranial metastases are present but no evidence for intramedullary lesions within the cervical cord. Intracranial metastases are present but no evidence for intramedullary lesions within the cervical cord."
The LP showed high protein levels and low glucose with atypical cells (scant cellularity insufficient for flow cytometry), but his PET scan overall seems unremarkable (see below) showing nothing other than a small section of his lung (7mm) and a couple of lymph nodes.
IMPRESSION: Abnormal ET and FDG PET/CT scan.
1. Abnormal hypermetabolism in multiple lymph nodes described above. The pattern is not specific but suggests lymphoma. This pattern can also represent inflammatory disease including granulomatous infection or sarcoidosis.
2. Slight hypermetabolism in a small right upper lobe lung nodule, less intense than usually associated with primary malignancy. Note that some low grade malignancies such as bronchial carcinoid, well-differentiated adenocarcinoma or adenocarcinoma in situ (bronchoalveolar cell carcinoma) may show low 18 FDG uptake.
My question is can a person have lepto and have a PET scan that doesn't significantly light up? In other words, can PET scans just miss this much cancer? Thank you for your help.
Reply # - March 13, 2015, 12:21 PM
Hi DMick, I'm sorry your
Hi DMick, I'm sorry your uncle has been diagnosed with lepto.
Unfortunately the answer is yes. A PET scan wouldn't be expected to pick up the small clusters of cells or individual cells that makeup lept. For a PET to show uptake there needs to be a nodule around a centimeter in diameter.
I'm so very sorry about your uncle's diagnosis. We have quite a bit of discussion here on the subject but unfortunately very little in the way of treatments. Let us know if you have other questions.
Janine
Reply # - March 13, 2015, 01:10 PM
Thanks for the quick reply.
Thanks for the quick reply. Obviously I was hoping for a different answer. I'm sorry that you know the answer to this question because you only know because you have to. Like your husband, my uncle is 53.
I'm new to the discussion board and tried to search for info on this but didn't have much luck. I'm guessing user error. We're moving forward with treatment...just finished radiation and he's getting the Ommaya reservoir placed on Monday. it's just so hard to comprehend this diagnosis especially with no prior history of cancer. Thanks again. Best of luck to you and your husband.
Reply # - March 13, 2015, 07:20 PM
Dmick, what drugs are the
Dmick, what drugs are the doctor's planning on infusing into the Ommaya reservoirs.
For what it's worth, my brain cancer progression is similar to your husband's. My doctor's decided to infuse my brain with several infusions of methotrexate, MTX. I got lucky in that this approach succeeded. My latest MRI shows NED.
Reply # - March 13, 2015, 08:31 PM
To clarify, he's my uncle,
To clarify, he's my uncle, but anyway, they are planning to infuse Topotecan into the Ommayo reservoir. The doctor said they may start as soon as next week as long as things go smoothly. I really appreciate you responding, and I'm so happy for you that the MRI is NED. That is such wonderful news, and I will continue to send positive thoughts your way! You give me hope!!
Reply # - March 13, 2015, 09:59 PM
Sorry about the error. Best
Sorry about the error. Best wishes for your uncle's recovery. :)
Reply # - March 14, 2015, 11:48 AM
DMick, Thanks for the wishes
DMick, Thanks for the wishes for my husband and me. It's heartening to read comments like yours starting, "I’m sorry that you know the answer...". Jim and I and many others have used the same sentiment but haven't seen it in a while. While I've learned in the last 6 years on Grace that having cancer or being told you have a limited amount of time is the most devastating knowledge to live with being a loved one is no ride in the park. It's good you're here to help your uncle and all the very best.
amd5, How relieved you must feel to have such news as NED. As you can see my husband also has been given the lucky and quite unlikely news.
I wish the same for everyone,
Janine
Reply # - March 14, 2015, 02:45 PM
Dmick, I'm not home free yet
Dmick, I'm not home free yet as a recent CT scan showed signs of slow progression.. On Monday, I go to the hospital for a lung nodule biopsy and then my oncologist will decide on a new treatment regimen.