First Steps

Hi, @tonit! I am sorry to hear that you have to worry about this but so happy that you are ON IT! Yes, I think the next thing to do is call your primary care doc to begin the conversation. There are high risk programs at the hospitals that can better assess your risk and help you make a plan involving anything from regular screenings to medications to prophylactic mastectomy. There are members on here who have made these choices. Thinking of you as you process this stressful information. Really proud of you for not sticking your head in the sand. ❤️ 

Knowing you have the gene is an important first step in taking control of your health! I am also considered very high risk, with dense breast tissue and a strong family history of breast cancer survivors, including my mom and four aunts. It’s essential to start by consulting your primary care physician to develop a screening plan that works for you. Regular self-breast exams are key to early detection. I personally alternate between a breast MRI and a mammogram with an ultrasound every six months. While some insurance companies may not cover this, it’s an excellent way to get different imaging perspectives twice a year.

Stay proactive and know that you are not alone—there is a strong community here to support you every step of the way! 💕

I was first seen at the high risk clinic at St Luke’s, they took great care of me. Once I knew I wanted to do a double mastectomy I moved to KU. Your OB or PCP can get you a referral. KU has a great high risk program too. 
I did a DIEP flap reconstruction. They used my belly fat to reconstruct. Science is really cool! I’d be happy to chat more and answer any specific questions. 

Knowledge is power so that is great that you have already done the genetic testing and know your family history. I ditto what has been suggested above. It is important to be seen at a high risk breast clinic by the same provider so that they can get to know you and monitor changes in your breast. I was seen at the high risk breast clinic at St. Luke's beginning in 2012 after a suspicious lump was self detected. I had very dense breast as well and was about A cup so small as well. Never thought I would find a lump with my own self exams but I did so it is also important to do your own monthly self exams and get to really know your breasts. Put it on the calendar with a reminder until you get in the habit. My routine was a yearly mammogram, usually with an ultrasound and then an MRI. I continued this routine for about 6 years with biopsies after most of my MRIs. In 2018 after my MRI and biopsy that followed it was suggested that I have MRI's every 6 months. At that point I was done with all the imaging and while there have not been any breast cancer related genes in my family, an older sister of mine had breast cancer in 2009. I decided to have a double mastectomy with silicon breast implant reconstruction. I was not a candidate for flap surgery. My nurse practitioner at St. Luke's was very supportive of all of my decisions and never pushed one way or another. Unfortunately, she is no longer at St. Luke's or I would recommend seeing her. Having a mastectomy without a cancer diagnosis is not an easy decision nor one that should be made quickly.  I think it's just one of those things that you'll have a fairly certain idea that it is the right decision when it is the right time. But that is why it is so important to have a good team of health professionals helping you navigate. Side note is that another sister of mine was just diagnosed with breast cancer a couple months ago. She had a lumpectomy and then chose a mastectomy vs radiation. I happy to talk to you as well.