Eleda wrote:Absolutely Mike but it's near impossible to not worry and the more I Reaserch, the more it worries me lol
Viscous circle, I just hate not having control over this situation,.
My youngest son has cystic fibrosis, so I'm used to treatments, watching trials and reserching Intergrative meds etc!!!!!
So it's like second nature
I rang the Irish cancer Society to ask if its standard procedure and they said only in matasasis, ( makes no sence whatsoever)
But my oncology nurse said all are tested, weather it has Matastasised or not,,,,
What's the point in giving someone one type chemo that's not going to benefit them and wait until it's got worse to check????
Now Because I also have a second polyp, 15cm away from the first, I'm thinking maybe it's Lynch because other's on here don't seem to have any other polyps only the one cancerous one
Sorry for all the question,,,
I'm probably driving u mad
Thanks Adele
I think that genomic tumor tests should be standard care for Stage III patients so that you can rule out aggressive mutations and things like Lynch. I think that it costs about $1,000 and it will tell you what your mutation is if it's a standard mutation. The other approach is to do individual tests to tell you whether or not you have something. But it just tests one or two things at a time and I have to think they add up. Better to test 175 mutations all in on shot.
I have a coworker that went to Dana Farber Cancer Institute with lung cancer and I'm sure that they did the genomic testing right away. He would have been dead over a year ago without it. The genomic testing determined that they had a drug to shrink the tumor but it would likely only work for a year and then mutate. And he took the drug, the tumor shrank and stabilized and then mutated. They did genomic testing again, determined that they had a drug for the mutation as well and he's still alive and the tumor is stable. I think that there are more drug options (they are more targeted than traditional chemo) with Lung Cancer these days if you have common mutations.
My son's manager offered to do the testing for me and that's how I know my tumor gene mutation.
I assumed that you were enjoying yourself in Spain right now.I certainly hope that it isn't as cold there as it is here. Last I checked, it was six degrees (F) here. One thing that might help with the worry and anxiety is if you can enjoy life or get engrossed in something. A good friend told me that most people are stressed out by work but I'm more stressed out by not working. Working can take your mind off the bad stuff.
After my first colonoscopy to biopsy the tumor, the GI doctor wanted a second one with proper prep to see if there were any more polyps. He found one and removed it. So I'm 58, had two polyps in my life and one was cancerous. I've heard from others that they sometimes get a few with each colonoscopy. A few people have told me that eating clean can drop the number to zero. I suppose that can be challenging with a couple of small kids - everything is challenging with a couple of small kids.
The standard of care in the US is to check for Microsatellite Stable or Instability (MSS or MSI). MSI is an indicator for Lynch. The MSS/MSI test is done with Immunohistochemistry and it's a blood test rather than a test on the tumor biopsy so it might cost a lot less. I got the information off one of my lab results.
I know that it's impossible not to worry - I worry too but sometimes the busyness of life pushes the worry aside. My wife worries a lot too. Cancer can be stressful for a lot of people in your life.