Where can you go for genetic testing? - Cancer Message Board

tescak · 01-04-2005, 06:25 PM

My husband lost his father and his brother to a relatively rare sarcoma. I know now that this cancer is often caused by a genetic flipflop of sorts (although it seems to be set off at the site of an injury as well). Since his brother died, he has had several family members talk to him about being tested for this genetic flipflop, but we don't know where to go and what to do for him to be tested. On one hand, it might be a little scary to find out, but on the other hand, if we knew he had the gene mixup, we could then make sure to watch carefully for it. Better yet, if he doesn't have it, we could stop worrying. My understanding is, this type of cancer can just sit there for years, about the size of a small seed, and suddenly start growing rapidly without warning. In fact, my BIL had an aching shoulder for a long time--nothing else, and the ache wasn't worrisome, since he'd once injured it and "it had been that way ever since", then one morning, he felt a lump that wasn't there before. If it's caught while it's small, it's relatively easy to treat, but it's very agressive once it starts growing and is quite a bit harder to treat. I'm finding myself scared now every time my husband mentions pain in joints or around a bone because of this. Does anyone have any suggestions about how to get this done? We're in Texas, if that helps. Thanks in advance.

ScarlettGA · 01-05-2005, 07:23 PM

Tescak - Our family has a little genetic abnormality in it, too. I had asked my doctor about being tested for the disease that runs in our family - while it's a rare disease - there are 2 female members who now have it. He told me this - IF I chose to be tested and it was confirmed I carried the gene or could come down with the disease then I would never be able to get health insurance again. He strongly advised me against having the testing done since if I do have the disease there is very little they can do to treat it - there is no cure. He said if it were a disease they could cure he might suggest testing. Anyway - just something for you to think about. Needless to say, I voted against testing for it. Take Care...Scarlett

tescak · 01-05-2005, 09:03 PM

That's one thing we've worried about. We're currently teachers and already covered, so insurance isn't a problem now. In the future, though, one or both of us may leave the profession, and then what? At the same time, though, this type of cancer becomes much harder to treat after it starts growing rapidly, so if he could end up with this, it would be so much better if we could be vigilant about it. Also, I'm getting a little scared, because my husband's having more or less constant pain in only one of his feet. Logically speaking, I know it's probably because he's on his feet so often, but it's been less than a year since his brother died, and I wonder "What if?" all the time, especially when he has real foot pain, which seems to be nearly every night. I don't know...really seems like we might well be "expletived" either way we go. In order to catch a potential problem before it got out of hand would probably require regular (yearly, maybe?) MRI's...at least, that's my non-medical professional understanding of it. Anyway, thanks for the input. That's something to really take into consideration (I wasn't certain you could be denied for having the potential to develop a disease). Well, I guess this brings me to a different question...would anyone else recommend that my husband have or not have the test?

ALV9574 · 06-19-2006, 10:25 PM

What type of sarcoma is it? My mother in law has been battling leiomyosarcoma..which is also a very rare form of sarcoma that is said to have genetic precursers..my husband is extremely frightened...they have recently sent a biopsy of the cancerous tissue to a one of a kind facility in Arizona for genetic testing so that they can learn which gene is mutating..I think this may help my husband to be able to get tested to see if he too carries this gene. I can get back on here once I learn the name of the facility in Arizona..it may be able to help you..
Good luck!