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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Profile picture for Chris, Volunteer Mentor @auntieoakley

It feels like you with other folks like @colorado73 have a support group started right here. 💕
I have a few gene mutation coming from both sides of my family. Including cowden syndrome.
I have breast cancer starting in my 30’s, and skin cancer some years back. I always scheduled all my screenings right on time until I just got exhausted from it all last year. Still scheduling but maybe on my own terms.
Are you comfortable inviting the people with multiple cancers to connect?

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Yes!!!
I'd LOVE to start a support group!
I could sure use some encouragement through this journey.
I just had breast reconstructive surgery AGAIN. Smaller implants due to the incompetent Surgeon I had to begin with. He OVERFILLED my 1st implants on purpose for HIS idea of what I should look like!
But thank God I found a new Dr that listened to me & has compassion & love for his patients! I'm so blessed! I've struggled with pain for 3 years due to the other implants. Nerve damage & pain. And I'm still in physical therapy, 3 years now. The woman I see is FANTASTIC & has to s of compassion for her patients too & has worked with me since day one! And continues to work with me.
Like having breast cancer isn't stressful enough, I had a surgeon that didn't care about what I wanted or how I felt. So suffering through that for 3 years was extremely hard! So stressful.
But I'm grateful for my new care team & I Thank God every day.
But yes, I'd love to hear from other out there that are struggling too with this gene mutation. Dr's are watching a cyst on my ovaries, a spot on my lung & my colon. Ugh ..

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Profile picture for rockstar22 @rockstar22

I don’t know of many people with multiple single site cancers and would like to find or start a support group.

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It feels like you with other folks like @colorado73 have a support group started right here. 💕
I have a few gene mutation coming from both sides of my family. Including cowden syndrome.
I have breast cancer starting in my 30’s, and skin cancer some years back. I always scheduled all my screenings right on time until I just got exhausted from it all last year. Still scheduling but maybe on my own terms.
Are you comfortable inviting the people with multiple cancers to connect?

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Profile picture for rockstar22 @rockstar22

I don’t know of many people with multiple single site cancers and would like to find or start a support group.

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Thank you. Me too!

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Profile picture for rockstar22 @rockstar22

Hi

I’m sorry to hear about your cancers. I have had three single site cancers, breast, endometrial and lung. I am currently in a study to see if there is a gene mutation

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I don’t know of many people with multiple single site cancers and would like to find or start a support group.

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Profile picture for rockstar22 @rockstar22

Hi

I’m sorry to hear about your cancers. I have had three single site cancers, breast, endometrial and lung. I am currently in a study to see if there is a gene mutation

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Thank you.
I'm sorry to hear about your situation. I hope you can find out more information through the study.
I'm hoping to find a CHEK2 study. Since there's not much information about the mutation.

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Hi

I’m sorry to hear about your cancers. I have had three single site cancers, breast, endometrial and lung. I am currently in a study to see if there is a gene mutation

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Profile picture for colorado73 @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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Profile picture for Zebra @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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Profile picture for Zebra @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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Profile picture for iavikingfan @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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