I am not sure about the CHEK2, but a BREAST MRI will catch cancer that a mamogram misses. I was diagnosed with Invasive Lobular Carcinoma (ILC) in my left breast in July 2023 by a MRI with contrast. It was found "accidently". They were looking for a suspicious area which was seen on mamogram in my right breast (it ended up being calcifications). ILC is hard to find in the early stages with a mamogram because it grows in a line, not a clump. It is usually fould at later stages by mamogram. A contrast enhanced mamogram was ordered and it basically confirmed that I had cancer in my left breast. A biopsy was orderd- cancer was confirmed. I had a lumpectomy and 5 years of medication was ordered and 16 radiation sessions. I also wanted to have a double masectomy (DMX) but was told by my surgeon and nurse the chances of recurrence are the same. I can't get it through there heads that I'm not concerned about a recurrence, I'm worried about a completely different cancer showing up in the future. My husband was with me so he basically agreed with them I than agreed to have the lumpectomy. I had a small slow-growing tumor. Three months later I have just had a 6 month followup for the original right breast MRI distortions they saw 6 months ago. They are now saying there is something else in my Rt breast--an enhanced IMLN (intrammary lymph node) that needs looked at by MRI in another 6 months. It's in their words "probably" nothing. Like you, I am tired of worrying about my dense/fiberous breasts that have at least a 20% chance of developing cancer. My mother had a lumpectomy in 2007, a masectomy in 2010 and another in 2014. I read from other women they have gone through the same thing. Go with your heart and get your DMX. I hope I haven't confused you further. I'm confused myself. My only concern for you is that they may pay for a DMX until cancer is actually confirmed. But because you had it once, they may. Sending big hugs to you.

Hi @deborahmontana
I'm very sorry to hear about your medical journey and frustration. I'll try to address some concerns/questions based on my experience.

As for conflicting test results 7 months apart, that could go either way. I had annual ultrasounds after my mastectomy and year 6 was still clear then just before my year 7 annual ultrasound I found a lump on my chest wall myself. I would like to think they would have found that two days later in my next ultrasound, but I'll never know. They did see it when I pointed it out. Did they miss anything the year before? Who knows? Lumps have to pop up and become visible at some point when they weren't before. I'm not a litigious person so rather than focusing too much on a possible past error, I just want to move forward and fix it now. I've experienced a lot of medical errors in my life and I just try to learn from them so I know what to watch for in the future or warn others about. I always hope if I can't benefit from my experience, maybe someone else can. Also, remember than an MRI can pick up things a mammogram can't. If you don't have confidence in your medical team, keep searching.

Like you, I didn't want more new breast cancer again and again since I am BRCA2+ and CHEK2+ so when I had stage 1, 7 mm breast cancer, I opted for the double mastectomy. That was good for 7 years. Like you, I wonder if the surgeon spread the cancer with the scalpel especially since she was defensive when discussing the recurrence, but again, the reason it spread doesn't change anything for me today. The recurrence popped up 3 years ago. Had surgery, radiation and am now on targeted meds forever to hold the cancer at bay for as long as possible. So far so good. I have chest, abdomen and pelvic CT scans every 6 months looking for changes. Other scans, brain, bone, PET were done initially and are repeated as needed based on any suspicious symptoms.

As for genetic testing for your daughter, check out color.com as that is where my surgeon told me to test my son when he turned 35. It was only $150 for a boatload of tests to determine cancer mutations, enzyme issues for metabolizing meds and cardiac mutations. I think it's $250 now. Their own doctors on staff can order the testing or you can use your positive test results to show why it is needed. My son has both the BRCA2 and CHEK2 mutations as well.

CHEK2 - my mutation was identified when I did additional testing 5 years ago when my son did his testing. My doctors didn't show much concern, but that may be because they had already known about the BRCA2 mutation for years and maybe they thought CHEK2 didn't add much more concern. Although if you read some of the CHEK2 threads on these boards, I've learned a lot about thyroid cancer risk and other stuff never mentioned to me. I believe the medical community is still trying to connect the dots on all the mutations and associated risks. The collective data will provide more insight with each passing year.

I can relate to all your pains, concerns, challenges and frustrations, but I'm still able to enjoy life despite the medical challenges. I believe you will too. Prayers for you in this battle to beat any cancer, have this all behind you soon and enjoy many more happy times in life.