Medical Anomoly, Metatastic B.T. w/no cancer elsewhere

pelica

My husband was diagnosed with a small blue cell tumor in the brain in early March. He had a biopsy and the neurosurgeon was able to remove almost all of the tumor. It had started to snake back into the white matter and he wasn't able to safely remove all the cells.
It was diagnosed, as I said, a small blue cell malignant tumor. The tumor itself was extremely necrotic. It was basically mush. The tissue is in such bad shape that the Mayo Clinic has said that it was lucky they could do as many stains on it as they did. There cannot be any more done on what is left because the tissue cannot handle it.
He had had a contrast CT scan done prior to the surgery which did not reveal anything abnormal, except for a tiny spot on his lower left lung. The report calls it a "tiny nonspecific-appearing nodular density".
Since the surgery, he has had a PET Scan, an Octreoscan, and another contrast CT. The PET Scan and Octreoscan did not show any cancer anywhere else in his body, and even the tiny spot on his lung did not show up.
My husband has been in good health before this. The only was we knew something was wrong was that he lost part of his field of vision - when he looked at the "4" on a clock, he could not see "8" thru "1". There was some mild headaches, but he'd been in a very stressful situation (living in another state for a temporary job) and wasn't anything to be suspicious about. He has never smoked, doesn't drink, works with computers as a programmer, never worked with any chemicals or processing plants of any kind. Was in Army Intelligence working in an office environment. No physical symptoms, unusual pain, etc.
What his oncologists have said is that they want to treat it with whole brain radiation with a boost after to the area that the tumor was in.
The anomoly part is that it is acting as a primary tumor, but pathologically, it is metastatic. It looks like it came from somewhere else, but they've run every test they can and all the scan come out clean. The blood work-ups are all normal. He has no pain anywhere else.
Does anyone have any ideas on this? Has anyone ever heard of having a metastatic brain tumor with no sign of cancer anywhere else?
I will add that his case is being submitted to the Tumor Board at Washington University / Barnes-Jewish Hospital in St. Louis tomorrow night.
Any help would be appreciated. We're so unsure and unsettled.

jeancmici

>>Has anyone ever heard of having a metastatic brain tumor with no sign of cancer anywhere else?

Yes - a friend of my cousin - actually her husband's boss - had a brain tumor with no other sign - but I later read that sometimes when a person has a good immune system, lung cancer, instead of settling and growing in the lung skips without leaving any sign and settles in the brain.

One consolation for your in your dilemna that I can see is that you are at a very good hospital. I realize this is an old posting - wonder how things are going now.
Regards, Jean
I had breast cancer - but sometimes just read other sections as I did tonight.

lisa777

jeancmici said:

>>Has anyone ever heard of having a metastatic brain tumor with no sign of cancer anywhere else?

Yes - a friend of my cousin - actually her husband's boss - had a brain tumor with no other sign - but I later read that sometimes when a person has a good immune system, lung cancer, instead of settling and growing in the lung skips without leaving any sign and settles in the brain.

One consolation for your in your dilemna that I can see is that you are at a very good hospital. I realize this is an old posting - wonder how things are going now.
Regards, Jean
I had breast cancer - but sometimes just read other sections as I did tonight.

In 1995 I had a primary tumor in my brain stem. I had three other metastatic tumors grow down my spine, and it was all contained in my CNS. Is that different, I don't really understand? I had severe brain truama from the placing of my tumor( blocked spinal fluid from going into my spine, was trapped in brain caused swelling and put me into a coma)They told me that my tumor was unoperable, it was completely wrapped around my brain stem and involunteery motions. They had to drain the fluid from my spine before they could even begin to deal with tumor. The pressure building in my brain had put me in coma. So, what I mean by I don't understand is maybe the fact that it started in my brain was brought up. I just don't know?

brendac

My father was diagnosed on Sept 28th with a brain tumor like your husbands. The neurosurgeon was able to remove the tumor and dad just finished 3 weeks of radiation. We are in the exact same situation where the tumor was metastatic but there is no sign of cancer anywhere else. My father was a long-time smoker and the lungs are suspect, but nothing is showing up. My dad just finished radiation and is so weak and tired he doesn't even want to get out of bed. He's very sad and is starting to lose hope. The dr. said he is going to start talking about chemo treatments in about a month or so. We don't know what to do since we don't have any cancer appearing to "attack". I noticed you wrote this in April. Have you learned anything new or have any advice??

Thanks,
Brenda

pugsmom

pelica
I am writing this on behalf of my sister. She was diagnosed in Nov of 2001 with metastic brain tumors. As with your husband they still have not been able to find any other site of cancer. They had at one time found a small spot on a lymph gland behind her lung and radiated that. Still scan after scan has shown no other cancer. They say that this is a metastsis from the lung. She is doing rather well. She does have some problems, like loss of some use of her right hand and a weakness in her right leg. She also has some short term memory loss. All in all her attitude is super. I am forever amazed and humbled by the up-beatness (is that a word) in her outlook on things. I wish I could tell you some concrete answers but we have none. We just keep hanging in there and take our cues from her. As someone wrote earlier - your message was posted in April. What is going on? How is he doing? 'Retts