chek2 risk assesments

My family is just riddled with camcer, mostly breast and colon. According to both my genetics counselor and my GI doc, my Chek2 mutation raises my risk for breast and colon cancer. Therefore, I recently had a colonoscopy and will continue to have them every 5 years, forever. The last one revealed some benign polyps, which have never shown up before. But I'm 60 and this is when stuff starts changing in our bodies, so I'll need to stay on top of it.

Dear Crys237,

Thanks for sharing your story and welcome to the BCO community. We are glad that you reached out and found us here. Please stay connected as you can and let us know if there is anything we can do to help you to navigate your way around the boards. The Mods

So I initially thought I had BRCA 2, I actually thought CHEK 2 was the same thing as BRCA 2. It turns out that I have CHEK 2. I almost wished it was BRCA because I can hardly find any information on CHEK 2. Myself and 4 of my immediate family members have had some type of cancer. Both my mother and my sister have had BC. And now they found something suspicious on my MRI. The thought of going through chemo and radiation ags terrifying does anyone know which is worse CHEC2 or BRCA 2

tricuit thanks for the article it was very insightful

You need to speak to a genetics counselor Tumbleweed

For the past 20yrs my sister who was a true superwoman battled breast cancer and today I'm sorry to say with sadness in my heart that she has lost that battle. She is now with our Heavenly Father and her beloved son.Rest in Peace I love you Brenda! 😢❤️

That being said I have appointment with a PS to discuss about having a prophylactic bilateral mastectomy on Thursday. It is not worth the risk I loss both my mom and sister in the last 4 months.

to all who have the courage to post here I so appreciate it and want to thank you all. I just received the news of chek2 positive test on Monday May 7,2018. This information confirmed my worst nightmares for myself and my daughter and son. I was diagnosed with metastatic ductal carcinoma on September 26th, 2017. With that diagnosis my additional news was that my form of cancer is a highly aggressive one. I am the first in my family to have BC.(that we know of going back generations). But my father had an aggressive gastric esophageal cancer as did his father. From day one of my diagnosis I had an underlying fear of not just this area but more so of a secondary diagnosis of lymphoma. I made the decision I would never want to go through a second time of chemo or surgeries so take care of business the first time around and not the easy way out with a lumpectomy. Little did I know this genetic test would confirm my fears. As soon as this diagnosis was given the genetic counselor stepped up to help my family figure out what to do next. A letter was written to be sent to my son and daughter as well as to all my siblings and cousins on my fathers side of the family. This is the first step for them to be tested for these same mutations. If they are positive for anyone then their next step is to continue the testing for their children. There has been posted everywhere on cancer sites the clinical trials and testing results from all over the world since 2004 in Europe as well as the USA. Since this news to myself and my family it is a race to make sure the treatments that have already happened and the decisions for future treatments are now the correct ones to continue. My treatments kept changing from day to day in the beginning since my cancer is a highly aggressive one. But as treatments became reality my responses were truly more successful and surprising that baffled my doctors. Now they understand why. I was lucky with the most positive responses to neo adjuvant treatments( and yes I was one of those rare ducks that had the rare side effects they couldn't explain). I continue to show rare side effect 6 weeks out of my 12 week regemin of taxol which can happen up to 10 years out from the chemo treatments I had and I am not headed to a double skin sparing mastectomy with reconstruction. I get to look forward to 3 to 4 total surgeries to get me to a halfway normal looking old me. I didn't sign up for this diagnosis and I don't take no for an answer and I refuse to settle to look in the mirror everyday to be reminded of my journey by the ugly scars I would see on my chest. One surgeon told me in an interview that when all is said and done, only myself and my husband would see the scars that are left behind in the mirror and it was a waste of my time to go through added procedures of reconstruction. To all of you out there battling with these decisions, never let anyone tell you that you need to settle for what they want you to do.. You believe in yourself and what makes you feel beautiful and right for you! Always ask questions and if you don't understand then ask again. This journey is the hardest thing I've ever had to travel and there is sometimes no support and it leaves me drowning. Thank you again for all who share in these forums for it is all of us who are actually going through our journeys that are the true support for those who travel along side with us. I will post next my out come of my mastectomies and further surgeries. Victoria.

I'm third generation diagnosed with BC. My grandmother died in her 80s from it. My mother, at 57, was diagnosed with non invasive carcinoma in her left breast. Stage 0. She had a bilateral, and has been cancer free since. I'm now 57, and in March 2018 was diagnosed with IDC, left breast. The right appeared clear. Discussed lumpectomy with Oncology team, and I told them I was inclined to follow my mother's decision--bilateral.

Then they recommended the Genetics test. Came up Chek2 and ATM. My siblings have moved into action for their healthcare, and my surgeon agreed, bilateral might be better way to go.

Bilateral performed April 19. One lymph node examined. Looks like Stage 1.

A week later met with surgeon who said, BTW, we found a second tumor in the left breast. If we'd done lumpectomy, she wouldn't have found it. Yay! 

Then, this Monday, I met with my Oncological MD. He said the second tumor is not the same cancer as the initial one. Also, it's bigger and appears to be more aggressive. He strongly suspects other cancer activity is occurring. Specimens have been sent to California, and I'm sitting here waiting for news. Needless to say, my husband, family and friends are just as frightened as I am.

Has this happened to anyone else? I know we can't cookie-cutter cancer, but I would just like some feedback.

Hamtram, you might want to repost your query under a new title. This thread is a year old, and while you do have the Chek2 connection, feel like you'd get more traffic on another board. Perhaps the Just diagnosed or IDC boards.

Thank you. I've got an appointment with my Oncological MD Monday morning with the results from the specimens of the 2nd tumor. I'll be a little more informed then.

Hi Ladies,

I was diagnosed with early stage triple positive IDC in Nov 2016 at age 53. No first degree relatives with breast cancer, and insurance wouldn't cover the cost of a genetic test (which was around $3000 back then) so I proceeded with a lumpectomy, chemo, and radiation. Then I learned that the genetic panel had come down in cost to $250 so I decided to have it done. It showed that I have a CHEK2 mutation (which my daughter unfortunately inherited from me) The genetic counselor says my lifetime risk of a second breast cancer is up to 40 per cent. My oncologist says that since I'm taking Tamoxifen my risk is more like 20 per cent. But he did say that if I had known I had this mutation when I was diagnosed it would have been a "no brainer" to have a double mastectomy instead of a lumpectomy. Now I have to choose between surveillance every 6 months for the next 20 years or so or having a preventative dbl mastectomy. I know its a big surgery which is why I avoided it when I was diagnosed. I'm confused as to what I should do!

I am also CHEK2. I didn't know about or have the test done until after the right mastectomy. Now, I want to have the other breast removed, for peace of mind. I would have gone for a double if I had known.