So---i Went To The Oncologist Regarding Lynch Syndrome

[Maxine]

Although I was there for genetic testing for lynch syndrome to see if our family has this, we still have to give other health history. I was surprised he knew about EDS, but not POTS. Interesting. We went into the whole reason I can't have a colonoscopy due to the cervical/cranial instability, POTS, EDS ect.

He saw that I had a Double Contrast Barium lower GI with AIR, and he said this is a good screening test for colon cancer. He said it wasn't as good as a colonoscopy, but it's good. This was two years ago, and he's going to look at the films to assess weather further testing is needed.

Most of the time we went over our family tree. My mother died of terminal cancer in 2007, her brother died two weeks after of colon cancer, my brother died of colon cancer Feb. 16th, 2009, and my aunt had brain cancer and died in 2003. My brother was diagnosed at age 48. This is good reason to do the genetic testing for lynch syndrome, and he was going to test my brother, but he didn't want to do it. He felt that it's a good possibility we won't have this gene for lynch because both my mother's parents did not have cancer. My grandmother died of heart failure at age 89, her father died in his 60s of a massive stroke---(drank too much), and none of their siblings had cancer----on either side. However, he still feels testing needs to be done.

I said I have digestive symptoms all the time, but no severe pain except of the two times I had flair ups on my large diverticuli in duodeum--(upper small intestine. It's 5 cm. in size, and there was some fat stranding from the flair ups. I told him I got the you know what scared out of me when the CT test was done in Nov. 2006 on the abdomen that mentioned possible neoplasm--(but not likely) in this area. He said, no wonder I was scared with a diverticuli this big. I was a little surprised, as none of the docs made a big deal out of it. However, I think they kind of lay low because surgery in this area is only done as a very last resort due to the complicated area----it's near the biles ducts ect. If I'm not having major symptoms then they don't worry about it. BUT, I do bloat A LOT, and I can never eat a full meal. I get full very eaisly. I also have constant discomfort in this area, but like I said, no severe pain. I have dull aching---and a full feeling. Sometimes it feels like a small baby fist in my side.

I think the only way to get a good look at this is with a upper endoscopy, as they have been able to see this before with a scope in Feb. 2001. they didn't seem alarmed then either.

I think time is running out with this, as I think it's starting to give me more problems.

The oncologist was VERY nice----very sweet man. He looks like he's in his 40s. My brother and his wife really liked him. He wants to help our family. He said he's going to check into how we're going to do the testing, and has me coming back in a month. He said he'll call me in a week to let me know exactly what testing will be done.

He didn't feel my blood work history had any significance as any signs towards cancer. I asked him about the elevated IGA levels, and he said they were only mildly elevated indicating inflammation-----most likely due to the spine issues.

White count has been elevated, most likely due to flair ups with large diverticuli in small intestine.

They have my CTs of abdomen, and lower GI on file, as he's affiliated with the hospital that did those tests.

I said that my POTS symptoms seem to be the thing making me the most symptomatic, and that would make me more sensitive to certain tests that require sedation, but again this is caused by the EDS. My PCP and the surgeon I saw regarding the colonoscopy are more concerned about the spine instability, and apnea combined. Intubation could cause serious problems to an inexperienced anesthesiologist not familiar with upper spine instability near the airway.

Maxine :0)