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Topic: CHEK2 mutation

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jul 6, 2018 02:54PM

MAT33 wrote:

Hi -

I am positive for CHEK2, and have a strong family history -- thus made the decision for bilateral prophylactic mastectomy. Anyone out there have family hx and CHEK2?

Also had to have breast reduction prior to PMX -- curious about other people's experiences.

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Jul 6, 2018 04:51PM - edited Jul 6, 2018 04:52PM by Moderators

MAT33, welcome to our community. You've had to make some very difficult decisions. You may want to do a search for "chek" or "prophylactic" (use the search box in the blue navigation to the left) as you will find a number of conversations around this (e.g. We're all here for you! Medicating

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Jul 14, 2018 10:10PM Elijahgirl wrote:


I too am positive for CHEK2, and have a strong family history -- also made the decision for bilateral prophylactic mastectomy with DIEP flap reconstruction surgery is scheduled on August 7th

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Jul 15, 2018 06:28PM MAT33 wrote:

wishing you the very best, elijahgirl!

It's great to 'meet' someone with w/ a similar experience. chek2 does not seem as well known -- it doesn't show up as an option to choose in this website for describing your genetic info (only brca 1/2)

keep me posted -- my BPMX won't be scheduled for a few more months --

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Jul 15, 2018 07:21PM Okkate75 wrote:

CHEK2, checking in! I only found out about it when diagnosed with breast cancer, and my identical twin sister got her diagnosis six months later. It's scary stuff, but knowledge is power. Good luck with your surgeries!

Dx 11/17/2017, IDC, Left, <1cm, ER+/PR-, HER2- Surgery 12/7/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/5/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/15/2018 Hormonal Therapy 5/24/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 16, 2018 04:21PM SimplyShira wrote:

Recently found out I am chek2 positive. My OBGYN has me getting Mammos and MRIs (if insurance covers) every 6 months. My mother was diagnosed at the age of 35 and passed away from a reoccurrence at the age of 46. I am 31 and unsure as to what I should do myself besides getting all the testing. There is limited information and I called a genetic counselor and they do not accept my type of insurance. Any information is greatly appreciated.

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Jul 16, 2018 06:00PM Denise-G wrote:

My sister and I are Chek 2 - both diagnosed with breast cancer at age 55. However, we were the first breast cancers in my dad's family. Dad's family had lots and lots of cancer, but no breast.

When I was initially diagnosed, I had a single Mastectomy as I was first family member with breast cancer. Now, 7 years later, I am having the other breast removed for prophylactic reasons. my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Jul 16, 2018 06:57PM - edited Jul 16, 2018 06:59PM by mustlovepoodles

My family tree is rife with cancer, mostly breast, uterine, lung, colon, thyroid, and pancreatic cancers. I had never heard of genetic testing until my BC was diagnosed. Turns out I have Chek2 and PALB2. No wonder I got cancer! I got rid of those demon breasts, ovaries, and uterus as fast as I could. Too bad we can't get rid of the other stuff too, but I guess we need them. So, now I get my colonoscopy every 5 years and of course, i see my BS and my MO every six months.

The worst part for me is NOT the question of recurrence. That I can live with. Two of my adult children decided to get tested themselves (my aunt was 24 at her diagnosis.) DS32 is negative for both, but my beautiful DD25 is positive for both. We were all pretty devastated at that news. The only bright spot is that she will have close surveillance, surgical and medical options. But that's a huge burden for a 25yo to bear.

I have one other adult son, 23, who is severely mentally handicapped. We've elected to NOT test him-- he's incapable of making decisions or participating in his own healthcare, and honestly, it wouldn't make a difference in our plans for his life.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Aug 22, 2018 07:16PM - edited Aug 22, 2018 07:19PM by Godismystrength

I found out last week that I have the chek2 mutation. I also ended up in the high risk category on the mammaprint. I opted for a mastectomy on my right breast, due to mammaprint, 2 different types of tumors in that breast, and mammogram, 4 months before I found a lump, didn't show anything.

Half way through chemo. 4 A&C 's done, thank goodness. 4 Taxol's to go.

Now, with the chek2 result, com wondering if I should have the other breast removed. Aunt and her daughter had mutation, too. Several other cancers in family tree. Knew it would get me some day, just not now.

Going to have a long chat with O next week.

Dx 3/22/2018, DCIS/IDC, Right, 2cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Aug 22, 2018 07:26PM - edited Aug 22, 2018 07:26PM by Godismystrength

I informed my daughter (25), son (27), sister, brother, and cousin about the chek2. I agree, 25 is young to be worried about that, but at least she can get tested to find out the risk. I told her to make sure she tells her OBGYN about her cancer risk so they take the time to do a thorough exam. She didnt think the doctor was doing more than a cursory exam, so now, maybe, they will take the risk seriously.

Good luck!

Dx 3/22/2018, DCIS/IDC, Right, 2cm, Stage IB, Grade 1, ER+/PR+, HER2-

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