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Was I already tested

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A month ago I had a hemangioblastoma removed from my spinal cord (L5). I've been told that because the tumor is so rear that it was sent to three different pathologist before they had a clear diagnosis.

My first question is did they test the tumor for VHL? I've heard people on here say, if I am understanding them correctly, that the tumor, or maybe blood from the tumor, I'm not sure, was tested and thats how they found out they had it. Is this something that should have been done, or maybe was it and I don't know?

Second question, my former oncologist, only saw once never going again, said that "pathology is pretty certain that this is a hemangioblastoma." I'm trying not to read too much into that, as these are the same people that told me that I had untreatable cancer, and then 10 minutes later said I didn't. However, is it possible that they are unsure and is it odd that it was sent to three pathologist? Do I need to call one or all of the pathologist, better yet can you even do that, and ask if this is a definite diagnosis?

And last, and not really related, is nausea something anyone experiences. Again, I have never been tested for VHL and as far as I know, no one in my family has it. Its just that in researching the type of tumor I had, I can't seem to get away from it linking itself to this disease. However, I show no other symptoms of any other tumors, but my "amazing" oncologist said that he didn't see any reason to run any test or check any part of my body for the possibilty of other tumors.

Lately I have been having a nauses feeling everytime I eat, regardless of what it is or how much. Sometimes one bite will do it. I've experienced acid reflux before but I feel that this is different. The acid was more of a feeling coming from my throat, where this one is more in my stomach. It's hard though for me to pin point when something may be wrong when eating becasue I had gastic bypass (weight loss surgery) a few years back, and it's not that odd to have a weird reaction to food. However, that surgery was 7 years ago, and this feeling is new. Also, bathroom habits have changed that are completly opposite of what someone with this weight loss surgery has, or that I have had over the last few years. It worries me because I experienced the same nausea and bathroom issues right before I discovered my spinal tumor.

Any insight is helpful. Again could be jumping to conlusions without a diagnosis, However, I seem to be able to assume everything has something to do with this.

2 replies

Talk to Fran. She is a VHL volunteer that represents Michigan and can probably assist even further. Fran can be reached at us-mi@vhl.org

Gale

hmmm, you sound like me keep getting the bottom of the barrell in terms of doctors....

are you having constipation problems (don't be afraid to post anything on here, we talk about it all from stem to stern). I've been having the same thing of late not sure which ailment to attribute it to though.

If you are having trouble going, this has worked really good. Buy a bottle of Esther C (500mg), dissolve a tablet in hot tea, take another tablet my mouth 4 hours later and another 4 hours after that you should go to the bathroom by the next morning. Keep this up until you start to produce loose stools. Then cut back to one tablet once daily. This should keep you pretty regular.

You can also chat with Gale on here she is the mediator for VHL she might have more info on your tumor. Good luck!!

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