CHEK2 mutation

MAT33

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.

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. https://community.breastcancer.org/forum/112/topics/852969?page=1#post_5218890). We're all here for you!

Elijahgirl

Matt33

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

MAT33

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 --

Okkate75

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!

SimplyShira

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.

Denise-G

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.

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.

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.

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!