High risk and not getting taken seriously

iza1989
iza1989 Posts: 1

Hi everyone

I’m new here.. happy to find a group that I can discuss my concerns with cause Reddit has some mean girls on there haha.

Long story short I’m 35F with family history of breast cancer.25% risk score.

My mom passed away from TNBC she was diagnosed at 47. My mom’s aunt as well & my moms grandma POSSIBLY. I did genetic testing- negative but it still doesn’t mean theres no harmful gene there it’s simply just not tested yet.

I had my second mammo & ultrasound since I have dense & cystic breasts and I read there was a complex cyst in the findings but a birads score 2. And I was told to not worry?

The whole time the breast specialist just told me to do self exams and to do come back in a year if I want but she suggests 40?!. She wouldn’t even consider medication for me, or MRI.

I actually really want to do a mastectomy but I’ve been told no 3x already by other surgeons


I feel like im a ticking time bomb to get BC - I only have anxiety about this but it’s consuming me!


Thanks in advance for anyone that took the time to listen to my rant lol! Would love to make some friends on here taht understand

Comments

  • maggie15
    maggie15 Posts: 1,563

    Hi @iza1989, If you are not satisfied with the explanation you received from the radiologist and doctor you could send CDs of your imaging elsewhere for a second opinion radiology read from a fellowship trained breast imaging radiologist. I don’t know whether your insurance would cover it but it may give you peace of mind. A specialist has more experience in a specific area than a general radiologist who reads scans for a variety of body parts. Also, occasionally imaging is misread (that happened to me.)

    As far as a mastectomy goes doctors won’t perform one and insurance won’t pay unless there is a genetic finding or biopsy proven reason for the surgery. Only 10 to 15% of people who are diagnosed with breast cancer have a family history of it. Most cases occur by chance. If anxiety about this is affecting your life you can speak to your PCP about meds for it. All the best.

  • exbrnxgrl
    exbrnxgrl Posts: 5,375
    edited January 24

    iza1989,

    I concur with Maggie’s post. To be blunt, doctors are not in the business of removing healthy body parts on the chance that disease may develop someday, insurance coverage not withstanding. I know this is worrisome and anxiety inducing for you as my own daughters are pretty much in the same boat (maternal and paternal sides). I have been genetically tested and belong to an ethnic group that has a high rate of BRCA genes yet all testing has come up negative. Does our family history point to a genetic connection or is it just plain bad luck? No one can answer this question yet .
    You are being taken seriously but you need to understand that performing major surgery is a risk in itself when no evidence of risk for bc actually exists. I realize that many people associate bc with genetic mutations but the reality is that those are the minority. The vast majority of bc cases arise with no genetic connection.
    Please speak to your doctor if anxiety is getting the best of you. Take care