By: Tracy Milgram-Posner
Information is very critical “not everything in life comes with instructions.” They say that in life 70% of what we learn is by what we watch and the other 30% is by what we are taught. Since July 2020, I wish those numbers were switched around. In 2019 I had 2 breast reconstruction surgeries that added to a total of 8 surgeries. None of those surgeries took away the pain that I have been dealing with. Fast forward to July 2020 I hosted a zoom call with a doctor from New Orleans, while he was educating us, on DIEP Flap he mentioned some key things that can be causing the pain from my implants. I felt as though I could related to all he was explaining. I decided to reach out and send pictures of my breasts with which he discovered I had extrusion where my implant was pushing through the skin. Since my diagnosis in July and throughout this pandemic I have been battling my health insurance. The biggest battle has been dealing with my health insurance. I have no out of network benefits so they won’t cover the procedure that I want done.
To elevate my pain I had to have 1 implant removed until I can get DIEP Flap. After hours of being on the phone with insurance representatives and even reaching out to the CEO, I still have no resolution. Due to frustration and discomfort with my body I started to lose my mind and isolate from friends and family. I hated myself. My internal dialogue became very negative.
I have spoken to several women and physicians in attempt to get more information I realized there was no standard of care. Now I am at a loss! Not that the information was great but, why can’t we get all of this information upfront. Why are we not told the dues and don’t up front, and the must haves all at once so we can have awareness of what to do? Women would encounter less problems if we were educated better.
This has been eye opener for me! Yes, I have isolated myself but, I haven’t stopped fighting. I use my pain and anger to move forward and not take no for an answer. No health insurance should turn down anyone from feeling whole again yet choose a doctor for you to have surgery with. Your surgeon should be chosen by you and you should be able to go where your feel confident in the physician and trust to do your surgery and not be played like a monopoly wherever you land that’s where you go.
November 13, 2020, I had to remove my right implant due to pain, swelling and extrusion of the skin. Extrusion is thinning of the skin. Before surgery I had an ultrasound, which showed the implant was 2mm and about to push through the skin. Facing this emergency surgery killed me totally and has me feeling like I have lost my women hood, completely! My isolation became worse it was hurting me and my family. No one should have to face these kinds of things. My better half pulled me to the side one night and told me things happen for a reason and what I am facing is only temporary.
Some people face life journeys that the final out comes are permanent and to stop being so hard on myself. What I need to tell myself is “this is temporary.” I wouldn’t know what to do without him and my mom’s support. They have been there with me through my surgeries, recoveries and depression. Since day one my better half has been taking care of me emotionally, mentally, spiritually and physically. I couldn’t ask for more. After 6 weeks I had to step up my game and start to deal with my inner emotions and tell myself it is temporary.
RIGHT now, I have put my focus on BRCAStrong and will continue to heal as best as I possibly can. As an advocate I know the value of finding a physician that each individual women is comfortable with. In my experience as a leader in the breast cancer survivor community I know I am not alone. We need to fight insurance, speak our voices and find a standard of care so we face less complications.
BRCAStrong is getting ready to launch a rebrand and new website to continue to inspire, educate, advocate and support previvors, survivors and thrivers. No one should have to face this alone, it’s not an easy battle. I talk to woman on a daily basis who are feeling alone or isolated because at times our close family or friends don’t understand what we are facing day in and day out. I will continue to fight for them. I have my own struggles; I am part of that struggle and totally understand. It’s more than just a surgery, it’s a lifestyle we will live for the rest of our lives.
Knowing our options is the only things that helps us prepare for the journey. Understanding personally how imperative it is to create a standard of care to have physician options and a community that supports you has inspired me to go on.