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Old 09-06-2006, 07:17 PM   #7
julierene
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Join Date: Dec 2005
Location: Illinois
Posts: 327
I am so glad others were willing to talk about this. I am amazed by some of the posts. I love this topic - and hate it too! I don't know if you guys remember my story... but the long and short of it is - I tried to do everything to PREVENT it from happening because I had a strong family history. But because my family was so small, I didn't have the data I needed to know what I was looking for.

Anyway, my mother got breast cancer at 28, my grandmother in her early 50s, my grandfather with liver cancer in his 40s, my brother when he was 5 got rhabdomyosarcoma, my daughter got adrenal cortical carcinoma at 5, and I got breast cancer at 28. If you look at my children and all the way up to my mother, 100% of us got the "cancer gene". My 3 children have the gene. My mothers 2 children also. There are only 2 relatives who probably don't (my uncle is in prision, and his son has tested negative.)

My mother and I had totally different lifestyles. She abused herself to NO end, and I tried very hard to do everything right - we still BOTH got breast cancer dx at 28, both went from Stage 2 to Stage 4 in less than 2 years. The genetics are so strong, that diet, exercise, enviornmental factors, etc etc etc, didn't help us one bit. The 2 children in the family dx at age 5, also were perfectly healthy children with very good diets. I hear of many children who eat so much JUNK all the time and SUGAR drinks that I just feel so sad by my children. But what we learned after 12 years, was that they finally found we had a p53 mutation that they didn't know existed when we were tested 12 years ago.

Genes are definetly a balancing game. But I think it helps to hear that they play such an important role. Even with enviornment and diet, genetics still probably hold the key. When people are exposed to carcinogens, I wouldn't doubt one bit that something in their genetic code is altered or mutated because of the exposure. They tell us that we need to be VERY careful about X-rays and CT scans because those types of things can actually "Cause" our family to get cancer. I was freaked out about it, and they basically said "Our genes already have 1 insult with a mutation that isn't able to function very well. Adding another insult to the DNA with exposure to radiation, is enough to probably push a damaged cell into a cancerous one."

The 2 children in the family who got cancer didn't have any x-rays. But with us, it probably wouldn't take much. I always wondered why my grandmother got a very mild breast cancer so late in her 50s, and my grandfather a rare liver cancer in his 40s. According to this p53 mutation, liver cancer really isn't on the menu. So it's weird to think if there might have been the p53 gene from grandma and maybe some other bad gene from grandpa that made the combination deadly. Even in families with p-53 mutations, the variety of cancers make you wonder. One family with the EXACT SAME MUTATION was getting bone sarcoma over and over, we haven't have 1 case of bone cancer yet. The doctors over at St. Judes say there are definetly more than 1 gene responsible for this Syndrome. It's just amazingly complicated. I get so bogged down in science sometimes that I can't even begin to imagine how hard just 1 Stage 4 person would be to cure.

Hugs, Julie
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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

Last edited by julierene; 09-06-2006 at 07:20 PM..
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