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Topic: Brca2 gene

Forum: Positive Genetic Test Results —

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

Posted on: Aug 12, 2019 06:27PM

ps04551 wrote:

my daughter is 33 and a brca2 carrier. Her mom had BC at 52 and had a lumpectomy. At 64 she is cancer free, My daughter is moving towards a double mastectomy. She is in excellent health, and my question is has anyone under 40 just continue withactive surveillance. Any. Suggestions for a second opinion near boston

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Aug 12, 2019 07:27PM MelissaDallas wrote:

ps04551, all of your posts seem to be about discouraging her from having a mastectomy and wanting her to do something else. Does she want the second opinion, or do you?

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 12, 2019 07:43PM ps04551 wrote:

I want her as well informed as possible. And I don’t appreciate the bitter manner in which you approach

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Aug 12, 2019 07:48PM vlnrph wrote:

Have a look at the FORCE website. It stands for Facing Our Risk of Cancer Empowered and has many young ‘pre-vivors’ thinking about these issues.

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 12, 2019 07:53PM ps04551 wrote:

Thank you. I appreciate your response

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Aug 12, 2019 07:59PM MelissaDallas wrote:

I’m not trying to be mean at all. It was a valid question. You seem to want her to wait and I am just trying to understand why. The FORCE website was recommended on one of your earlier posts and it is a great source of information

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 12, 2019 08:09PM ps04551 wrote:

I have spent countless hours looking up info. I am painfully aware of the force recommendations. My daughter will make her own decision. I am one of her support systems and plan on a 2nd opinion from Dana Farber. Her mom didn’t get cancer until 52 and at 64 is healthy. I don’t see any harm in attempting to find the best minds available with insight into the BRCA gene..

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Aug 12, 2019 08:14PM Capecodgirl wrote:

Dana fFarber has a genetic cancer prevention program that could be of help to you. If you google it you will find their website with their contact info. I found my consult with Dr Houma Rana there very informational and helpful

Brca2+ Dx 5/24/2017, IDC, Right, 1cm, Stage IB, Grade 1, 1/2 nodes, ER+/PR+, HER2- Surgery 5/31/2017 Lumpectomy: Right Hormonal Therapy 7/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/17/2017 Prophylactic ovary removal Hormonal Therapy Aromasin (exemestane) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Aug 12, 2019 08:15PM ps04551 wrote:

can you please tell me more? I hope you are doing well.

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Aug 12, 2019 08:36PM Capecodgirl wrote:

I was referred there by my oncologist. He referred me to Dr. Judy Garber, but was ultimately directed to Dr. Huma Rana due to other cancers in my family. When I called for the appointment they sent me a questionnaire to complete which asked for my complete history as well as my immediate and extended family. They also requested all medical records from the cancer diagnosis and treatment-- scans, biopsies, surgical notes, etc.


When I went for the appointment I met first with a genetic counselor (i think that was her title). She gave me a lot of good info, although I don't remember too much of what she said now ( that was 2017). I then met with Dr. Rana who talked with my husband and I about the risks I face, and the things I can do to mitigate them. She then gave me her recommendations of what I needed to do surgically/medically to hopefully make sure I do not get other cancers associated with this mutation. She had referrals to surgeons/ doctors that could help me, but I chose to go with my own. I looked up the number for appointments - it is 877-442-3324. You might want to check out thier website too. If you google Dana Farber Cancer Genetics and Prevention Program you will find them.

I am doing well- thank you for asking. I wish your daughter well. It is scary to find out you carry this mutation, and Dana Farber is an excellent resource to help you navigate this diagnosis.


Brca2+ Dx 5/24/2017, IDC, Right, 1cm, Stage IB, Grade 1, 1/2 nodes, ER+/PR+, HER2- Surgery 5/31/2017 Lumpectomy: Right Hormonal Therapy 7/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/17/2017 Prophylactic ovary removal Hormonal Therapy Aromasin (exemestane) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Aug 12, 2019 08:43PM ps04551 wrote:

Thank you for being so kind and responding ...I wish you all the best

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Aug 13, 2019 01:00AM PezGal wrote:

I have BRCA 1. I found out I had it when I was diagnosed with Stage 2 BC at 39 yr and 11 months old, just under 40. Gosh, if I had known I would have gotten those suckers taken off in my early/mid 30’s. I’d have surgery over cancer ANY day. Reconstructed breast can look pretty darn realistic these days and many folks live happily with them. I think ovary removal is kind of a bigger deal than breasts (my personal opinion, and I did have mine removed). All that being said, there are BRCA support groups on Facebook and you’ll find many people that prefer to do surveillance over surgery. I personally wouldn’t want to live with that worry. BMX will take her odds down from 80-something percent to 2-4%. But, it’s her choice. What ever when decides be sure to support her cause either way it sucks.

Best of luck!

BRCA1+ Dx 9/9/2015, DCIS, Left, 3cm, Stage 0, Grade 3, ER-/PR- Surgery 10/19/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 12/2/2015 AC + T (Taxol) Targeted Therapy 1/27/2016 Perjeta (pertuzumab) Targeted Therapy 1/27/2016 Herceptin (trastuzumab) Radiation Therapy 5/22/2016 Surgery 8/11/2016 Prophylactic ovary removal Surgery 12/6/2016 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 6/7/2017 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Targeted Therapy 9/4/2017 Nerlynx Surgery 5/3/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Aug 13, 2019 04:48PM - edited Aug 13, 2019 04:49PM by B-A-P

I've replied in another thread you made about the same thing. In the end it's up to your daughter and what she wants. I don't think you should dissuade her. It seems like you really don't want her to have the mastectomy. The fact of the matter is that the gene predisposes her at a fairly higher rate than the regular person for breast cancer. I was diagnosed at 30 with stage four !! Meaning I must have had cancer long before then , especially considering I had 8 cm of dcis ,I also had Lcis , papillomas, PASH, you name it. I have BRCA 2 as well. Had I known prior to my diagnosis, I would have hadn't the surgery in a heartbeat.

Tamoxifen has side effects and is also a carcinogen - you'd have her take a pill that could cause another cancer so that she doesn't have surgery ? Many do well on tamox and others have miserable side effects . Not sure if they will even give t to her if she doesn't currently have cancer

I u derstand the worry. I get it. You're trying to be protective. But take it from me , boobs mean a lot less than my life. And I'm doing great without em

I'm

Not sure what the hesitation on your end is.

Second opinions are great. I hope you get the answers you're looking for and that she ends up okay :)

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 Surgery Prophylactic ovary removal Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 13, 2019 08:04PM ps04551 wrote:

thank you for taking the time to respond and share your thoughts and experience. I by no means would tell my daughter what to do. Just want a second opinion, ultimately I will support and respect her decision, just a worried dad who wants the best for his kid, again I appreciate your insight and agree that surgery to almost eliminate the chance of cancer makes sense......my sincere thsnk

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Aug 13, 2019 08:06PM ps04551 wrote:

thank you for your candor and sharing what you have been thru. Hearing your upbeat optimism definitely helps. Looks like ultimately my daughter will have the surgery. I’m just a dad who wants the best for his kid

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Aug 13, 2019 09:50PM B-A-P wrote:

I can definitely understand that , and the worry that comes with it. I’m a parent myself. I worry if I’m going to be alive to see my kid grow up. It’s a harsh reality that many of us face. I think many of us that have responded have been a little passionate about it because we could have only wished we knew about our gene status before it was too late ya know ? Had myself and my drs have known , perhaps I would have been taken more seriously and it wouldn’t have gotten as far as it did.

I would have happily spared my breasts to save my life . Hoping your daughter has the very best outcome and a long and healthy life cancer free.

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 Surgery Prophylactic ovary removal Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 13, 2019 09:59PM ps04551 wrote:

I thank you for reaching out. I hope you live to a ripe old age to get to enjoy your family. All of these heartfelt responses definitely puts things in perspective. So many people are so generous with their time and sharing the good and bad.

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