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I have tested positive for p53 mutation. Here is something I think is worth mentioning.
I came from a family with many cancers. In 1991 or 1992 they told me there was nothing wrong with my p53 gene. Later in 2004, I found out that there was - and that I had passed it on to all 3 of my children.
The reasons for testing them were 1) I hoped I could not have to worry about the ones that I hoped would test negative 2) So I could be vigilant about their care since I have a child with cancer - the risk of my other 2 was very high. So that being said, I found out that in 1991, they had only mapped out through Exon 9 of the p53 gene. From their perspective, 99% of all cancers "they thought" were in Exon 1-9. I learned this later from research. In reality, they have changed the number to 90%. My luck - I had a substitution at Exon 10.
Back then, they didn't know what was going on with our family cancer history. They tested the p53 and a few others and said "Nope, everything looks fine, but we still think genes are playing a role." Since I was 16 at the time, I didn't remember all those details. I just remembered that everything was negative. So even if you get negative results, it doesn't mean squat. The only way the testing has value is if it's positive. IF they find something, you can watch more aggressively and have a reason to do so. It's a very hard decision though - and it's also very hard to live with. So make sure you are ready for what ever decision you go with.
Now they are saying breast cancer could be caused from a virus - like HPV and cervical cancer. Back when those commercials came out, I made mention of it in these forums that soon I felt that they would be saying many other cancers were to follow. Viruses cause genetic mutations. Why couldn't they be mutations that make us susceptible to cancer? Viruses attack our immune systems. Our immune systems are what is responsible for cleaning up cancerous cells. One little attack could do it. But who wants to live with that kind of knowledge?
The only thing I can say is "WE NEED TO GET OUR GENES BACK IN ORDER!!! GENETIC RESEARCH IS OUR SALVATION!" There is no cure for Stage 4. The only cure I could possibly fathom is having my genes altered back to what they should be.
I hope you all enjoy the fun with this one. I imagine this might irritate all the "Diet is our answer" people here.
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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