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Topic: Tamoxifen for brca2 no previous cancer

Forum: Positive Genetic Test Results —

BRCA 1 & 2, ATM, BARD1, CDH1, CHEK2, MRE11A, NBN, p53, PALB2, PTEN, RAD50, RECQL, RINT1, and possibly MSH6 and PMS2 genes

Posted on: Jun 11, 2019 04:54PM

ps04551 wrote:

hello,

I’m searching for info. My daughter is 33. Has brca2. 7-8 years ago removed fibroid cystic mass....june2019 another mass seen on MRI. Extremely small, waiting for results.....regardless of outcome my daughter insists she is having her breasts removed. Can anybody tell me if tamoxifen is useful in staving off a first time cancer? If I read correctly. It will lower risk for up to 10 years.

We are in Rhode Island. Would love to hear from someone with more knowledge then myself.

Right now grasping at straws.

Thank you

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Jun 12, 2019 02:53PM vlnrph wrote:

Sorry to hear that your daughter is grappling with issues like these at such a young age. You may want to go to the FORCE website, it stands for Facing Our Risk of Cancer Empowered. Begun by those with BRCA mutations, the focus is now also on other genetic concerns such as ovarian malignancy. They have lots of information on line.

Tamoxifen is certainly a reasonable short term choice especially to preserve fertility. Pregnancy is possible after going off of it. It cannot prevent every tumor since the target is estrogen receptors. Triple negative disease exists.

Even after double mastectomies (prophylactic is not really a correct term), a small amount of breast tissue remains so there is still a tiny chance to develop a lesion there. One needs to know their body and report unusual findings. I hope the medical team can help through this decision making process and that you can be a good support person!

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Aug 9, 2019 04:19PM ps04551 wrote:

hello,

My daughter is 33 brca2 positive. Family history mom had BC at 52 still clean at 64 grandmother had breast cancer at a young age( late 30s). My daughter is leaning toward double mastectomy. Would it be wrong to buy some time and go on tamoxifen? Her dr. Said highest is about 10 years prior to moms cancer.

Need help

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Aug 9, 2019 08:07PM B-A-P wrote:

ps04551,

I think it's ultimately her decision. Knowing you have the gene and not knowing if and when it'll hit is a hard way to live. It's always in the back of your mind. Having surgery in her mind probably gives her peace.

Tamoxifen has helped many women no doubt, I am on it myself. Tamoxifen luckily for me has treated me well so far, but it does have side effects. The hot flashes I handled fine, but the insomnia is brutal. Some experience more side effects much worse, and some even better.

Tamoxifen is also a carcinogenic itself so there's always that risk as well. So risking one cancer to prevent another. There's always so much to consider especially with DCIS or even no cancer, but just the gene. I am 31 and in a much different situation than your daughter. I don't have breasts anymore and am coping just fine. Everyone is different I know. I have these awesome bras that have the shape of breasts , and I get decide when to put them on and take them off lol . It's been nice to have that option. There's recon as well if she wants to physically have breasts.

Is there a reason you want her to not have the mastectomy?

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Chemotherapy 9/18/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy: Left, Right Radiation Therapy 4/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole) Surgery Prophylactic ovary removal Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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