Anyone else have CHEK2 gene mutation? And have had multiple cancers?

I have the chek2 mutation as well. I found that out after being dx with triple positive breast cancer. I was told that I should have a colonoscopy every three years I think and keep an eye out for thyroid issues. I do the Signatara testing every three months because I cannot tolerate the AI’s. I understand your frustration, it’s like waiting for a bomb to explode. I am sure I got the mutation from my father as he had prostate, kidney and bladder cancer none of which metastasized all were primary cancers

@kmitch75
I’m sorry to hear of your plight. You’re in my prayers.

Looking for any insight into clinical trails for chek2 mutation resulting in undifferentiated cancer with tumors all over abdomen. Stage 4. Tumors are entwined and enmeshed with organs and can't be cut out. Being treated at MSK...they've done extensive DNA research and can't pinpoint where cancer started.

Colorado73, thank you for your kind thoughts. You have lost so many loved ones to cancer at such an early age. Awful. The only positive is that genetics is finally starting to become an effective treatment with the new editing techniques. I had to fight off the nasty effects of tamoxifen, but it can be done. There is always a psychological component to any physical problem. So, focus on living and decrease thinking about this evil gene expressing itself in the future. God bless you as well.

Thank you for sharing this. I'm so sorry. Yes it's very frustrating for sure to go through the anxiety of being tested & the waiting for the results. I do understand. I finally got through therapy for voice therapy to help from thyroid surgery. That helped a lot. I still see weekly a Occupation Therapy for lymphedema from breast surgery. It truly helps. Being around positive people truly help. God bless you & your son.
Hang in there💕🙏

Wow! Thank you so much for sharing! You are amazing!☺️ I'm sorry you've had to go through all of that. My father beat prostate cancer 35 years ago but the brain tumor stage 3 took him after 3 years of diagnosis & taking max radiation & chemo. I've lost parents & sister, aunts, uncles & cousins due to cancer. I hate it! By the time I was 45, lost all of them. Yes I agree this gene is HORRIBLE! It's a robber! But I'm trying stay positive & exercise & stay busy. Thank you for sharing. God bless & take care!💕🙏

I have the nasty CHEK2 gene and have had prostate and breast cancer. Both treated at MN Mayo Clinic. Prostate with 20 proton beam radiation treatments and mastectomy and 3 positive nodes removed and 16 proton beam radiation. I have been taking tamoxifen for almost 3 years and am 84. Just had a 3-year f/u colonoscopy with 2 benign polyps removed. I play bridge, exercise and wash/wax my car while living in an active sr. living facility. No more house/yard chores! My internist checks my thyroid twice/year. This gene is frightening, but I decided that the mind over matter issue was controllable. Took awhile. Be well and decrease your anxiety by not playing "what if." We walk in each other's shoes. Educate your docs about this horrible gene!!

@gigi2016
Wow, you had the 1-2 punch with two things in a row. My son and I are both due for follow-up colonoscopies and it does make me nervous to wonder what’s happening in between scopes.

Aside from my mother and son that I asked in person, the email I sent to relatives suggesting genetic testing was met with cold silence. I was so surprised.

Thanks for the update.

@californiazebra
Thank you for your prayers and support ❤️ I had the hysterectomy in April 2023 and I found the lump in my breast in May. My gynecologist asked my oncologist should she schedule to have my ovaries removed and she told her no because of the Aromatase inhibitor I have to take for the next 5-10 years. Although they were causing more problems than helping. I started out on Anastrozole but it was causing so many joint pain and headaches, fatigue that she switched me to Tamoxifen and no change so I stopped taking it as well. I will talk to my gynecologist about getting the insurance to approve the surgery to remove my ovaries.
Unfortunately my did not know anything about CHEK2 and he was also being treated for a stomach ulcer before the VA doctors realized it was a tumor the size of a golf ball. He was diagnosed with stomach cancer in Jan 2003 and died June 2003. I was 33 when he passed and his older sister suggested that I get my colonoscopy since I was the oldest child. My first colonoscopy was normal and I my second one June 2022 and it was normal but my EGD said I mild gastritis and it was suggested I change my diet. After my last radiation treatment in August 2023, I had my fourth colonoscopy October 2023 and it had to be rescheduled because my colon was fully emptied after taking both of those Clenpiq drinks. I am glad I was able to have a clean colon for the colonoscopy I had this month because after reading about the polyp and size removed it makes me wonder how long the polyp was there to grow to the size of 10mm and seen in the first 2 colonoscopies. My sister that was diagnosed with anal cancer also has the CHECK2 unfortunately my other siblings and mother won’t get tested.

I will update once I get my results.

Thanks for listening 🥰

@gigi2016
Thank you for sharing your story and list of CHEK2 risks. I pray that your biopsy comes back negative. So stressful waiting for results. I also pray your other son is CHEK2 negative.

I am curious why they left your ovaries intact when you have an increased risk for ovarian cancer.

Interesting about your father. Did he have any genetic testing? My grandmother died from stomach cancer. She had a 12 pound tumor when diagnosed! She was petite but thought she was just gaining post-menopausal weight. I wonder if she had the CHEK2 mutation? I know my BRCA2 came from the other side of the family, but not sure where CHEK2 came from.

Please let us know how the biopsy turns out. Let’s all keep up with our screenings. Zebra