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Topic: CHEK2

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Aug 5, 2016 08:41PM

Mhennessy21 wrote:

Hello! I am 29 years old and diagnosed with Chek2 last year. My 2 sisters also tested positive (passed on from my dad's side). I have started getting mammograms and MRIs yearly. I have this overwhelming fear of getting BC and having my family have to go thru all of that stress like I had when my dad was diagnosed with prostate cancer. I keep playing around with the idea of just going ahead with the double mastectomy. I feel like if I continue with getting checked yearly it should be caught in time before it gets too far but I am still struggling with what to do! Anyone else have these same concerns?

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Aug 5, 2016 10:25PM Moderators wrote:

Hi Mhennessy21-

Welcome to BCO! We hope you find the support and information you need in these forums!

Your concerns are very common. It's a big, personal decision, to monitor or go through with prophylactic treatment. You'll get answers from other members who've done both, but it's really deciding what fits with your lifestyle, and how comfortable you'd be with either option. Both present positives and negatives, and there really is no right answer. Just the one that is right for YOU.

Good luck on your decision, we're here to answer any questions you might have!

The Mods

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Aug 7, 2016 08:32AM rsk wrote:

Hi! I found out I have chek2 a year ago last May after my mother tested positive for it. I am 45. My mother has had BC three separate times and there is a strong family history. I get checked now twice a year, one mammogram and one mri. I also think about the double mastectomy as opposed to going through all the tests and "waiting" each year. It seems inevitable for me but I try not to think about it and hope for the best. They don't know so much about chek2 yet. I understand what you are going through!

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Aug 28, 2016 11:54PM Imkopy2 wrote:

I am also CHEK2 positive....unfortunately for me I found out after I was diagnosed. My advice to you is play a very proactive role in keeping yourself informed about everything involving BC. You are your biggest advocate! I had annual mammograms all were clean including the one (Aug 2015) I was given a clean bill of health prior to this from my ob/gyn and told she would see me next year. In Feb 2016 I found a lump in my left breast and was diagnosed with a 3cm tumor and node activity. I had a bilateral mastectomy in April. Im not by any means telling this to scare you but if I can help one woman based on my experience then that's progress. Do monthly breast exams, don't be afraid to ask questions & take the time to research things out there like parabens, pesticides in our foods, and the use of different types of plastics for your food. Remember you are not alone<3

If it doesn’t challenge you it won’t change you Dx 3/7/2016, DCIS/IDC, Right, 3cm, Stage IIB, Grade 3, 3/8 nodes, ER+/PR-, HER2- Surgery 4/13/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/23/2016 AC + T (Taxol) Radiation Therapy 10/23/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/8/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 9/26/2017
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Jun 10, 2017 09:33PM Toughiebird wrote:


amnew to this network and offer what i know, now as Ive seen 5 dr for consultations in last 2 weeks. i was just diagnosed with small high grade, DCIS. found out 6 months ago i am chek2 positive (from a blood test my sister encouraged me to do, as she did where she was positive - she had DCIS 9 years ago, had a mastectomy on that one breast and has been healthy since). I had a lumpectomy 3 weeks ago to fully diagnose the path as DCIS from the in office - 2 different Dr read it differently going into the full surgical biopsy 9 one said probbaly DCIS, one said benign)... important to challenge path too. what I'm learning, as I decide whether to get a prophylactic bilateral mastectomy for prevention vs radiation is; for chek2, my Dr recommend alternate 6 month screenings; MRI, then mammogram/ultrasound, then MRI etc. The curious thing was my MRI was normal, 3d mammogram normal and ultrasound picked it up - then a week later prior to surgery prep, MRI STILL said normal and didn't pick it up - so need all 3 surveillance. also, I understand there are 2 types of chek 2 mutation and most research quoted is on the one that is 110..., i have a a different one with less research.

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