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

Thank you for sharing your story. I'm so sorry you had to go through all of that. Yes sir it IS a terrible gene for sure! My oncologist I saw 2 days ago flat out said- We just don't know much about this gene because it's so rare! Ugh...not what a patient wants to hear. He recommended I go ahead & do the Radioiodine treatment, unfortunately & definitely get a hysterectomy this year to prevent the uterine cancer side of it. But without estrogen replacement therapy due to the gene mutation thriving on estrogen. And he's ordering an ultrasound of my armpit because of pain I'm having since double mastectomy surgery last year. Ugh...just so much still going on & my endocrinologist called me back yesterday about my Synthroid medicine. She's changing the dose again because of the awful side effects im having on the 200mg dose. Ugh...roller coaster, gotta love it.
Blessings to you.
By the way, I'm 50 now. I was diagnosed with BC at 47, skin cancer at 48 & thyroid cancer at 50.

Thank you for sharing your story. I'm so sorry you had to go through all of that. Yes sir it IS a terrible gene for sure! My oncologist I saw 2 days ago flat out said- We just don't know much about this gene because it's so rare! Ugh...not what a patient wants to hear. He recommended I go ahead & do the Radioiodine treatment, unfortunately & definitely get a hysterectomy this year to prevent the uterine cancer side of it. But without estrogen replacement therapy due to the gene mutation thriving on estrogen. And he's ordering an ultrasound of my armpit because of pain I'm having since double mastectomy surgery last year. Ugh...just so much still going on & my endocrinologist called me back yesterday about my Synthroid medicine. She's changing the dose again because of the awful side effects im having on the 200mg dose. Ugh...roller coaster, gotta love it.
Blessings to you.
By the way, I'm 50 now. I was diagnosed with BC at 47, skin cancer at 48 & thyroid cancer at 50.

In 2008 at age 38 I was diagnosed with Pap Thyroid cancer that had spread into surrounding muscles, I found it myself. My greatest fear was leaving my 3 kids. In 2020 at the age of 50 I was diagnosed with Clear cell Renal cancer after getting a CT scan for an umbilical hernia. The Doctors freaked out I wasn't afraid. They didnt think I took it seriously. I have had multiple benign lumps. Breast, skin, stomach, and including a hysterectomy in 2011 due to multiple fibroid tumors. 4 of my mothers sisters have died from cancer (brain, lung, pancreatic). My mother survived her breast cancer. Both my Grandmother's had cancer and 1 of my Grandfathers.
My Dermatologist not my Oncologist sent me for testing after both cancers and it came back for Chek2 Gene Mutation on myself. Both my daughters tested positive. My son, half brother, and father were negative.
15 years now without a Thyroid or any problems. I got the RAI (Radio Active Iodine) pills treatment and body scan. Then a year later the RAI body scan. Then another RAI body scan. After 5 years remission a yearly ultrasound. I'm followed by an Endocrinologist every 3 months because my generic synthroid would never stabilize. They finally got it stabilized last year using true synthroid. Now I go every 6 months.
They removed half my kidney in 2021. No treatment since it was caught very early at Stage 1. I got a MRI at 6 months and now I get a yearly MRI to check. My kidney blood labs are all good.
They wanted to do a double mastectomy this month but, I denied it because my last surgical biopsy (my 2nd lump) at the beginning of the year gave me horrible pain (mastectomy syndrome). I get a Mammogram yearly since 40 and now a Breast MRI 6 months later. Colonoscopy every 5 years as recommended by American Cancer Society guidelines for Chek2.
So far neither cancer has slowed me down. I never miss a scan or check up. They do extra scans on me because of the Chek2 a normal kidney cancer would have finished scans by now. I have a Endocrinologist I see every 6 months and an Oncologist I see every 6 months for follow ups.
I'm not one to live in fear of much. I am doing all I can to keep cancer at bay. I figure if I'm doing all I can do then it's either going to happen or not. I've already done better than anyone else in my family beating cancers butt. The only way I can truely beat cancer is to not let it control my life. I know it can happen at any time so I live my life without regret and I'm ready if/when it finally catches up to me. Nobody in my Mother's family lived past 74. My mother passed away from a heart attack 8 months after she beat breast cancer. I was notified after I got out of surgery for my kidney cancer. To me fear doesn't help anyone/anything, cancer wins. Spending my time having a good quality life is how I win. Making sure my daughters get their check ups and enjoing my life is winning no matter how I go in the end.

@mebanbury

You've certainly had more than your share of stuff. Love your attitude and outlook. Keep kicking cancer's butt and enjoying life. 🙂

I have the CHEK2 gene mutation. I only learned of CHEK2 when I was diagnosed with BC in January 2023. I am currently in treatment for the BC. Interestingly, I had my thyroid removed in 1994 when I noticed it was enlarged. Went to the doctor and found out I had hyperthyroid. They told me it was pre cancer and a simple fix was to remove it. I have been on Synthroid since then. I haven't had any problems with it once they found the right dosage. My dosage only changed when I was pregnant and then after the pregnancies it would reset back to my current level. I only take the name brand Synthroid which is more expensive but seems to work best for me.
The recommendation I received on the gene mutation was to have a colonoscopy every 5 years rather than 10.

Wishing you only the best.

Hi @journey99

You are the second person to say they only take Synthroid brand, not the generic because Synthroid worked better for them. Both of you had your thyroid removed so I'm guessing on a much higher dose than me with hypothyroidism for 35 years. I took Synthroid in the beginning, but I've been taking the generic for 30 years since that is what insurance covers. I was just told to stick with the same manufacturer when using generic as they may all dose slightly differently. I'm wondering if you could tell me exactly what difference you noticed between the name brand and generic. Thanks.

The difference we found was we couldn't get my levels to stabilize with the generic brands. My levels aren't the same each time I do bloodwork, but they are pretty consistent within a range. Insurance only covers a small portion of the Synthroid brand, and it is costly. I have thought about trying generic again for insurance purposes but not sure I want to take the risk at this time.