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

Thank you for sharing. I'm so sorry! My mother's side is where this came from. There's generational breast cancer, Colon cancer & thyroid cancer that runs rapid in that side of family. But my dad's mom had bc at age 90 & had breast removed with no treatment & lived to be 106! And my dad had prostate cancer in '92 & beat it but in 2014 was diagnosed with stage 3 brain cancer & died in '2017.
I've lost many people in my family to bc & thyroid & colon cancer. Not many left to ask questions to. But al of us cousins have been tested & out of 8 cousins, 4 have the chek2 gene.
Good luck to you. I pray we can all find the right Dr's to help us make the best decision for our health!! It's frustrating when my Drs say - We don't know or have that much information on it cause it's so rare!! So they just tell me to do surgery after surgery taking out organs. I'm definitely tired!!
And I have hysterectomy coming up in October to look forward to with out estrogen replacement! Ugh. I will be soon doing the Radioiodine treatment from my thyroid cancer & NOT looking forward to it. My Oncologist suggested I do it but my Endocrinologist doesn't want to due to the risk of others cancer popping up from it. Ugh... Frustrating!! I can't go to Mayo due to my insurance, so my oncologist is sending my medical records up there to them to get advice on what to do. I see him next month for those results. Crossing fingers I get some news back!!
Thank you again for sharing. Blessings to you and your family.

My Primary sent me to Mayo
In January of 2015 to get some relief after I was rear ended at a stop light. I had a bad accident in 1982 and had 4 surgeries on my neck. The first test was an MRI of my neck, and they saw thyroid cancer. After biopsy they confirmed it was Papillary cancer and set up surgery.
In a consult I told them that my sister was on her second BC at ages 40 and 68 and she test positive for the CHEK2 gene. They then test me right away, I was positive. At that time they said that they only had 8 patients in all of Mayo with CHEK2 and that it was rare. Well guess what it wasn’t rare because 8 out of 10 families members tested positive for CHEK2. Myself my 3 sisters , My 2 sons and nephew and a niece. I’m sure there are many more that have it but choose not to get tested. It carries so many cancers. After my Thyroidectomy at Mayo I saw
Drs for BC, and Colon Cancer. My family’s history
Show it must have come from my fathers side with 3 sisters that had BC. In 2016 I opted to get a Prophylactic Bilateral
Mastectomy with Deep Flap Reconstruction at Mayo with
3 Drs and 9 1/2 hours. After that my Sister with the 2 BC
got Thyroid Cancer. So now CHEK2 is not so rare as we were told.

Thank you so much! I appreciate the support, really I do. It's been a breath of fresh air getting in touch with other people who have issues like me.
I will definitely keep everyone updated when I see my Dr again & the results of the ultrasound as well. I actually see my plastic surgeon on Monday. It's my 6 month follow-up.
Thank you again for support & well wishes!💕

@colorado73
You've been through a lot in a short time. In 2013, I had my ovaries/tubes removed due to the BRCA2 mutation. We didn't know about the CHEK2 mutation until 2018. I asked my GYN at the time if he could just take the uterus too so I would never need another surgery and he wouldn't do it at my request because it increased risk. Now that I'm hearing more about CHEK2 and your plan, I really wish he would have! I don't do well with abdominal surgery at all so I will never have my uterus removed proactively.

Good luck with your armpit ultrasound. I'm really hoping it's just hurting because of lymphedema cording. I get pain from that. I also have so much pain and tenderness down my sides from my double mastectomy 10 years ago and especially from the chest tumor I had removed 3 years ago. Nerves can be very unforgiving after surgery. Let us know how it turns out. Blessings and hugs, Zebra

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.

I have the CHEK2 gene and was treated with proton radiation for prostate cancer at age 78. Did well. Then had a mastectomy and 16 proton radiation treatments for 3 positive nodes at age 81. On tamoxifen and doing ok. No other cancers so far. Terrible gene that requires regular follow ups! Good luck. Now age 83+. I am a male and 2 of my adult children inherited this awful gene.

My daughter- age 40- has the CHEK2 mutation.
She is getting breast Mammogram and MRI twice a year- alternating.
I have had BC, but I don’t have that or any other mutation.
CHEK 2 mutation also increases the risk of male BC.
Hoping to have my son and other daughter get tested too.

Hi @colorado73

Thanks for sharing more of your story. I am really interested now to know the name of that rare skin cancer you had. Don't you just love when you hear you have something rare? Ruh-roh! You definitely want to be boring medically speaking. I've had to stay out of the sun my whole life since it makes me break out with psoriasis so you'd think I'm safe, but now I have two genetic mutations putting me at risk for various skin cancers?

I'm curious about you having yearly thyroid ultrasounds. Is that because they had already seen a nodule on your thyroid they were monitoring or was that purely for screening due to CHEK2? Did you have any symptoms for thyroid cancer other than a tumor? I remember I had a thyroid nodule about 35 years ago that they did scans and ultrasounds on, but decided it was benign. Guess it was since I'm still here. I think it went away eventually, but I haven't had a ultrasound since then. I guess I've had PET scans since then though. Endocrinologist can't feel a nodule. This new CHEK2 info has added new concerns.

Lymphedema PT is the best - you're right! Part of it is relaxing and the other part getting the cords out is so effective for improving range of motion. I've had PT for that 3 times in the past 10 years.

No one told me anything about radiation and CHEK2. Hmmm.

Synthroid - I've been taking Synthroid for 34 years for hypothyroidism. Once on the right dose, I didn't have issues with the med. Too high and you will have hyperthyroidism symptoms. Too low and you will be dragging with hypothyroidism symptoms. When I was first diagnosed, I was soooo fatigued I could hardly drag myself out of bed to the living room sofa on weekends to be available for my young son. On so struggled on workdays. I would go out to my car for lunch and breaks and crash fast and hard I was so tired. I was also freezing all the time. Even if 85 degrees in my home, I was freezing. Those were the two worst hypothyroidism symptoms for me. It does take about 6 weeks for each dose change to take full effect. I hope they get you to right dose soon!

Hi Rita @ritabtripp

@colely recently mentioned that $950 test -- Galleri. Amazing that you took it and it revealed nothing. Good for you for staying on top of things with the CHEK2 mutation and all the family cancer history. My family is like blackout bingo with cancer. Everyone seems to get something different so I'm thinking there may be more than two cancer mutations in our family and they just haven't been identified yet or else they haven't linked all the cancers in our family to my two mutations yet. Like my brother being diagnosed with stage 4 lung cancer at 45 when he never smoked a day in his life. Sounds like a predisposition to me.

Thank you for sharing!
Yes I agree, early screening is best!! I had a colonoscopy done 2 yrs ago & everything came out fine. But thanks to my annual mammogram, they found my cancer early & yearly ultrasound on my thyroid found the cancer. This journey for started when I was 47 with skin cancer & it's been 3 years now. One cancer a year it seems like. Lol. But praying that's all the body parts I'm giving away! No more!😜
Hang in there. God Bless!