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

@jpmtja123 Wow, you've had a lot of different cancer issues to deal with. The more stories I hear about multiple cancers for people with CHEK2 mutation, the more concerning it gets. My oncologists just seemed to focus on my BRCA2 mutation and I didn't get much of a reaction when I showed them new test results showing the CHEK2 mutation. In fact, a lot of doctors are unfamiliar with it even though I've read it's more common than BRCA2. BRCA mutations seem to get all the attention. Prayers from me too.

I'm so sorry you've been through so much. I understand. I'm blessed to have this group myself. I'll be praying for you. Good luck with everything.

I was Diagnosed with my 1st BC at age 31, second BC 39, which was a totally different type in other breast. That’s when they discovered I had Chek2 . I’ve had so many skin cancers I can’t count , all 3 types. I have to get checked every 2 Months. In 2020 had Right side of Thyroid removed cause it had 5 pre cancer nodules on it. I’ve also been diagnosed with Grover’s Disease, rare skin condition. In 1998, after the birth of my first child, a Malignant Peripheral nerve Sheath Tumor was removed from in between my breast. The only reason I’m on here I was looking it up and saw your comment about Chek 2. I’m sorry we all have this but I’m glad I found you guys. Both my sons have it but my daughter does not. Plus this week I found out my thyroid is off again but it’s my T3 . So having ultrasound on it to see what’s going on. Having said all this lol , I feel blessed , to be here and help others.

@smhaas37
Sorry to hear you've been hit with so many cancers. I find it concerning that you had multiple myeloma because my son and I have the CHEK2 mutation and my grandma and uncle (mother/son) both had multiple myeloma. I don't think anyone else has tested for CHEK2. My aunt, uncle and mother all tested for BRCA2 after I found out I had that. They didn't have it so it came from my dad who had already passed. I didn't know about CHEK2 until years later.

It seemed people in the family did not want to hear about my genetic mutations -- silence in response to my family e-mail advising others to get tested. Then my aunt and uncle didn't even tell me they tested and were negative. I found out years later. Was anyone else made to feel like the bad guy when telling others they should get checked? No good deed... Not one relative thanked me for the heads up.

So many other cancers in my family. Knock on wood, but so far no one in the family has had thyroid cancer. I'm surprised after reading how many of you with the CHEK2 mutation have had it. I had a thyroid nodule at 30, but it went away long ago. Scary stuff.

I am 53. Diagnosed with Papillary Thyroid Cancer at 44, Breast Cancer at 48- genetic screening + CKEK2. Diagnosed with multiple myeloma at 49.

Thank you for your response. It’s important to feel your best. Glad Synthroid works well for you. I guess I’m lucky the generic has been pretty stable for me.

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.

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.

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.

Thank you. When I was 20 I was a helicopter mechanic in the US Navy. Before sexual harassment was a term. The only female in a shop with 24 men. I learned to kick butt and never take crap from anyone/anything a long time ago.