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

The dam spell check it's chordoma cancer.

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The three cancers I have had are lymphoma, penial cancer and chordoma. They found chordoma in my spine and is growing in my brain. They have operated twice taking it from my head with radiation after first operation. I have had all the radiation my head will take. In 2021 was my first operation and radiation which held it to no growth for 3 years then in March 2024 my 2nd operation. June 2024 the cancer had grown 3 times the amount of the last 3 years. Know I am on a experimental injection drug. Time will tell.

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I have about many CHEK2 variants , with many forms of cancers. Brain cell, white matter, bone, pancreatic, esophageal, testicular, skin, perineal, cardiac. I also have gall bladder, liver, LGMDR23, FKTN, voice box, etc. Old Karl

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@oldkarl

I have about many CHEK2 variants , with many forms of cancers. Brain cell, white matter, bone, pancreatic, esophageal, testicular, skin, perineal, cardiac. I also have gall bladder, liver, LGMDR23, FKTN, voice box, etc. Old Karl

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I'm truly sorry you're going through this. God bless. Thank you for sharing.

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@iavikingfan

The three cancers I have had are lymphoma, penial cancer and chordoma. They found chordoma in my spine and is growing in my brain. They have operated twice taking it from my head with radiation after first operation. I have had all the radiation my head will take. In 2021 was my first operation and radiation which held it to no growth for 3 years then in March 2024 my 2nd operation. June 2024 the cancer had grown 3 times the amount of the last 3 years. Know I am on a experimental injection drug. Time will tell.

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I'm truly sorry you're going through this. Thank you so much for sharing. You're in my prayers.

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@californiazebra

Thanks for the update. A rare cancer can add to the frustration. Good that you were able to be properly diagnosed so you can be properly treated. Clearly you’re a strong person. Praying that you beat all three cancers.

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Thank you very much for the support. My recent CT scan on my abdomen & pelvis areas didn't show any masses thank God! But Dr is watching a cyst on an ovary & crystalized lymph nodes on my kidneys, lung & sleep. I'll keep everyone posted when I know more. Thank you again.

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@californiazebra

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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Yes I do have the CHEK2 mutation gene. The cancers I've had is skin cancer, breast cancer & thyroid cancer. Had a double mastectomy & thyroid removed. I keep up with my Dr appts & any scans or labs they want to run. Just had a lower abdomen pelvis CT done & no masses were found. Thank God! But they are watching a cyst on an ovary & crystalized lymph nodes on lung, kidney & spleen.

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@colorado73

Yes I do have the CHEK2 mutation gene. The cancers I've had is skin cancer, breast cancer & thyroid cancer. Had a double mastectomy & thyroid removed. I keep up with my Dr appts & any scans or labs they want to run. Just had a lower abdomen pelvis CT done & no masses were found. Thank God! But they are watching a cyst on an ovary & crystalized lymph nodes on lung, kidney & spleen.

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Wow, that’s a lot to handle. Funny how the BRCA mutations are all over the news but I had never even heard of the CHEK2 mutation until I found out I have it. I don’t know if my BRCA2 or CHEK2 mutation is responsible for my breast cancer but so many more cancers to watch out for. Oddly, my second cancer is neuroendocrine lung cancer not related to either mutation. Some bodies are just prone to cancer.

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