Learning, always learning

My mother was diagnosed with Ovarian cancer 8 years ago and they noticed commonalities in our family tree, so she got tested. She tested positivefor a BRCA-2 Mutation, so my sister and I got tested too. My sister does not have a BRCA-2 Mutation, but I do. I'm so grateful we both do not carry the general Mutation.

At the time, it was multiple layers of grief and acceptance because I was also about to get married, dealing with my mother having cancer (after a long history of women on both sides of my family having cancer) and trying to navigate this new "me"

I was scared for my mother, trying to accept the weight of the BRCA-2 diagnosis, trying to not be overwhelmed but I also knew I was not ready to have kids yet. Trying to gather all the information I could find & consider all my options given the recent diagnosis, and trying to stay calm during an already stressful time. I felt so lost.

I feel like I didn't have the guidance or answers, so to speak that is available now. I was thrust into endless doctor's appointments for all the preventive screenings, without really recieving any concrete information, so I felt very lost.

I felt like my mother and I were both left to piece together between all out doctors visits. I found the doctors I met to be a little cold and concrete at first, and some to be completely unaware of how to treat someone with my diagnosis.

I was going through the motions of doing preventive screenings and finding my baseline values. My hospital system did offer counseling with a therapist that was a breast cancer survivor and honestly I feel like she was the most real and transparent with me.

I didn't know how to feel exactly, I knew I wanted to try for kids and then do my surgeries at some point, but the whole diagnosis was initially very anxiety producing

My mother lost her battle with Ovarian Cancer after it's third recurrence, about a year after I had my first child. After my second child was born, I had an umbilical hernia that needed repair. I knew the hysterectomy was a similar surgical procedure and recovery, so I decided to do that (hysterectomy, salpingo, oophorectomy) along with the hernia repair.

I felt that the physical recovery was not that bad but I had a very hard time hormonally adjusting. I was only given estrogen patches that would not stay on all 7 days. I had many, many side effects, dramatic weight gain, couldn't sleep at night, no energy, sleeping all the time during the day, depression, hair falling out, skin changes, joint pain and inflammation. After about 3 months, I was in an OB office begging for some medical intervention.

I was put on oral estrogen for a few months to find the right dosage, and then 3 months after that initial appointment-I saw my regular OB and she started me on estradial patches and progesterone. The progesterone helped dramatically, I could sleep again, my mood, energy and stamina started to return slowly. Over the next 18 months, I started feeling better and better. I lost 50 lbs I had gained since my surgery, I was strong, happy, and felt physically great preparing for my Mastectomy.

I had my prophylactic mastectomy in March of 2026 with a DIEP Flap reconstruction. The physcial recovery from that surgery has been amazing at times and such a struggles at other. I am 7 months out from that surgery and still battle withscar tightness, which can take up to 18 months to dully heal. I felt phenomenal as far as energy and being in shape before the surgery. I have struggled since because my body stopped absorbing estradial and so basically went back into menopause again about 2-3 months after surgery, so I've been on a HRT journey since then. I am very relieved that my surgeries are behind me, but I'd be lying if I said I'm not upset that my hormones are still a massive struggle 2 years after my hysterectomy. I just started topical testosterone about 6 weeks ago and am I starting to feel physically stronger, though still having issues with sleep and energy.

I think I may have waited to take my ovaries out, but still had the hysterectomy and fallopian tubes taken out. I've heard from many women that the ovaries still start to fail after the salpingo/hysterectomy anyways... but it would have been nice to have a more gradual introduction to menopause, but being slammed into it. I made the best decision I could with the information I had at the time and I can safely say I'm done with preventive surgeries. Hopefully my surgical journey is done, and I'll be safe and healthy for a long, long time.

I am so grateful that through my journey I have found many resources, especially on the last year or so. I think many women like myself feeling that there are not enough resources for genetic mutations. I created a website while I was home on my Mastectomy recovery leave, but I haven't been able to publish it yet due to some technical issues.

I want women who are recently diagnosed with a genetic mutation to know they have options, and others that will gladly tell them their story to help them through. I want them to know it is not a death sentence, but an opportunity to feel more in control of your future, your body, and your health journey. It is a heavy load to carry, and not everyone will understand or support the decisions you make for your body or family.

I feel like when I am overwhelmed, I'd love some sort of structure or guidance. There are so many more resources than I felt I couldn't find 8 years ago, so I'm happy women are leading the charge to be more vocal and transparent. I also wish a genetic counselor would say "ok you have this diagnosis, here are the next steps you should take, the resources available to refer the patient to right away, instead of the patient having to go searching for help and guidance.