CommunitiesJust Diagnosed With Breast CancerSeeking Advice: Stage 1 Breast Cancer with CHEK2 Mutation

Seeking Advice: Stage 1 Breast Cancer with CHEK2 Mutation

PY

Community Member

a year ago

Hello. I'm newly diagnosed with Stage 1 ER/PR hormone positive, HER2 negative, and CHEK2 (1100delC) mutation breast cancer. Lymphs appear clear at this point. Going for MRI in a few days. Surgery will be booked after MRI results. I'm just post menopause (1 year no period). I'm especially concerned with the CHEK2 result. Anyone have experience, knowledge, advice with this type and treatment?

10 comments
Comment
accepted answer

Accepted Answer

Finding community members who understand your specific diagnosis and genetic factors can provide valuable insights and emotional support during this challenging time. The combination of factors you've mentioned is something other members may have navigated, and their experiences could help you feel more prepared for the journey ahead. Consider connecting with others in this community who may share similar diagnoses or genetic considerations to learn about their treatment paths and coping strategies.

3+ patients found this helpful

EM

Community Member

6 months ago

What type of cancer? I’m Chek 2 positive too. Same mutation. I had a double mastectomy because of having this mutation. I could have went the lumpectomy route but I was done with mammograms, U/S and MRI’s. My cancer was LCIS and associated ILC. No nodes, Stage 1 A. This type of of cancer is sneaky. It’s difficult to detect because it grows in lines rather than forming a definitive lump. It can be in both breasts with out showing up on the mammogram. I had a MRI first because that was my protocol which was inconclusive and then had a diagnostic mammo, U/S, another u/S with two biopsies and MRI guided biopsy. It was only on the one side for me 🙏.

2
PY

Community Member

6 months ago

Thank you, EM. It appears mine is the same breast cancer. One side for me (right) at this point and will have to see what my MRI uncovers. I am seriously contemplating my options. May I ask what post-masectomy therapy/medication were you recommended?

EM

Community Member

6 months ago

I’m 58 and was premenopausal at diagnosis so they have me on tamoxifen. I have to stay on tamoxifen until I am one to one and a half years without a menstrual cycle. My blood work now says I am menopausal. I have been on the tamoxifen since April of this year. I had no chemo or radiation.

1
PY

Community Member

6 months ago

Thank you. I appreciate your experience and insights. 🙏

2
EM

Community Member

6 months ago

You’re welcome. Keep me posted! 🙏. Best of luck to you!

3
DN

Community Member

6 months ago

Just diagnosed with the same! My breast surgeon put me on Anastrozole prior to the surgery. I’m terrified of all the side effects! I’m post menopausal as well. Starting that drug tonight.

2
DM

Community Member

6 months ago

I was prescribed Anastrozole and I’m terrified of it. My question is what happens if a person didn’t take it. I’m 72 had a mastectomy on right breast and I have to take 20 radiation treatments and no chemo

3
KL

Community Member

6 months ago

Dona N. I have been on Anastrozole for about two months. The side effects are very minimal for me. All I have is a little fatigue but can handle it very well. Don't be afraid to take it. It is well worth it. I am 77 years old and was diagnosed with early stage 1 breast cancer. The medication is well worth the risk

4
KL

Community Member

6 months ago

Yes we are all terrified of the cancer medications, but in the end it is a risk that we all have to take. I am afraid of recurrence and don't want to have to go through surgery and radiation again. We all have to hang tough. I know it is scary but we all have to do what is best

2
CA

Community Member

2 months ago

Finding community members who understand your specific diagnosis and genetic factors can provide valuable insights and emotional support during this challenging time. The combination of factors you've mentioned is something other members may have navigated, and their experiences could help you feel more prepared for the journey ahead. Consider connecting with others in this community who may share similar diagnoses or genetic considerations to learn about their treatment paths and coping strategies.

Outcomes4Me

© 2025 Outcomes4Me Inc. All rights reserved.