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

Posted by colorado73 @colorado73, Jun 1, 2023

I've had skin cancer, double mastectomy due to breast cancer & reconstruction, and now thyroid cancer & had to have thyroid removed. I'm scared & frustrated & I'm not getting a lot of answers from my Drs bedside blood tests for cancer markers. I'm tired & frustrated & am needing advice from others like me in this situation.

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@iavikingfan

I know your feelings, I am on my 5th round of cancer
I have three different types, this time I have chronometer which 1 in a million people have. I have had 2 brain surgeries and am fighting it again. There is no cure for it after I had radiation on my head twice. Cancer sucks.

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Sorry to hear about your multi-cancer battle. That ‘s rough. Do you have the CHEK2 mutation? Can you give more detail of your 3 primary cancers? I want to look up your rare cancer. Thank you.

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I know your feelings, I am on my 5th round of cancer
I have three different types, this time I have chronometer which 1 in a million people have. I have had 2 brain surgeries and am fighting it again. There is no cure for it after I had radiation on my head twice. Cancer sucks.

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@kmitch75

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.

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I'm truly sorry to hear this. You're in my prayers 🙏. God bless you

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I'm very sorry to hear your story. Definitely sounds familiar, unfortunately. My father had prostate cancer but beat it, then 25 yrs later was diagnosed with stage 3 brain cancer. Lived 3 1/2 years afterwards. But my mother's side has all kinds of cancer & have lost everyone on that side except a few cousins. So I guess I'm the mix between the two lol.
I just had a CT scan done this week, Dr was looking for masses due to a tumor marker coming back positive. But nothing was found except a cyst on my ovary. It's not grown since the last time. Anyway, keep your head up. I know it's hard. This too shall pass.
God bless & best wishes for you on your journey.

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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

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@kmitch75

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.

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

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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.

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@colorado73

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!💕🙏

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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.

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@gigi2016

@colorado77 and @californiazebra
I am 53 and I have CHEK2 mutation and was diagnosed with stage 1 ILBC and today I had my 4 colonoscopy and a 10mm sessile polyp was removed. My father died at the age of 48 from stomach cancer. Based on my CHEK2 mutation results, I am a high risk for BC, colon, cervical, endometrial, ovarian, thyroid, kidney cancer. I had a hysterectomy last year but my ovaries were left. So far I have experienced 1 of the many listed and I pray that my biopsy results is negative. Although I do wonder about what I should do if my biopsy is positive. My middle sister had anal cancer and completed chemo and radiation in 2023. My oldest son has tested for CHEK2 and was negative but I am waiting on my youngest son to test. I pray that God takes care of everyone on this forum and brings peace upon your souls as well as your loved ones🥰

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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💕🙏

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@dick61

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!!

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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!💕🙏

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