My mom was dx'd with DCIS 2.5 cm tumour, 0 node involvement, ER+. She had a lumpectomy and is now in middle of rads. She will be put on an AI.
Up until Oct, her dx, I had no fam history. Today I inform my onc and she said we need to talk about genetic testing. I asked why does it matter. I don't have daughters or sisters to worry about. It's just me and mom. Nope. I was schooled on the importance of finding out if I have a genetic mutation gene(s) which I guess is what brca 1 & 2 are called.
I was in a fog so I'm not sure I got the facts straight so I'll write what I think she said and please correct me/add to it as you see needed. Thanks-
If I have it, I'm at even higher risk of developing other cancers. They can actually pinpoint through blood test that say I'm a high risk for ovarian cancer. If that's the case then wise move would be to just have them removed. What can't be removed say like pancreas and such they would do more intensive screening that you wouldn't otherwise get because insurance doesn't cover it.
My thought was of course, no one other than bro in my fam knows. She said they do the testing on me and don't need anything from mom. Then she brought up the other reason it's wise to do it. It's not just for myself but for every blood relative, female AND male. If I come up positive for the brca1 and/or brca2 gene then I very well may have to spill to everyone about my cancer battle. This is because it increases their chance of getting some type of cancer(not just breast as the panel points out what organs I have the mutated gene). They can get tested to see if they have the gene(s) and insurance covers it. This would allow them to possibly prevent it from happening. She gave me the example of Angelina Jolie and how she didn't have cancer but though genetic testing found she has that gene and opted to have bilat mastectomies. It also showed her high risk for ovarian cancer so she had them removed. If say I have the one for bc then it's highly recommended I tell everyone in the fam esp mom so she could get tested and see if she has the gene. This would probably make her decide to get bilat mastectomies in an effort to prevent cancer. Or for say my 30 year old cousin, she gets tested and has the bc mutated gene. Since she's only 30 she may choose to take Tamoxifen which helps prevent cancer from happening as well as re-occuring and she'd be closely watched. She may decide to just get bilat mastecs. If I'm + then my bro could have the gene to increase his chance of bc or prostate cancer, etc. By my revealing (if I'm +) to everyone in the fam male and female I'd be giving them a chance to prevent them from at least genetically getting cancer. Most bc is not genetic but cancers like pancreas are.
My biggest confusion is did I understand it right, that the brca 1 and 2 test they do points out if I have a mutated gene for any cancer, or just bc? I look at brca and it spells out breast cancer in my eyes.
Just looking for any corrections or any other important info I missed on the long talk. I tried reading up on it but the way I write is best how I understand things, not the more formal writings.
Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now.
6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL)
8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
11/3/2015 AC + T (Taxotere)
5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall
6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
2/14/2017 Femara (letrozole)
3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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