Previvor Frustration

By: Tracy Milgram-Posner

Happy PREVIVOR Day.

Ever go away to separate yourself from the world! Research a place, see what amenities they have while you are there and the research you’ve done wasn’t good enough.

That’s how I felt for the last few months, before COVID19. BRCAStrong has been educating the community for previvors, survivors and thrivers whether you carry the BRCA mutation or not.  Knowledge is Power and knowing your options should be mandatory.  I am a Previvor, an individual who has a predisposition to cancer, but have not had the disease.  I did this to reduce my risks.  As someone who is BRCA 2 positive I had an 87 percent chance for breast cancer and 80 percent for ovarian cancer. 

Seven breast operations later, after gaining knowledge through my research as an advocate, listening and learning to physicians and other women’s stories I feel lost. I can’t begin to explain how lost I feel and destroyed I am due to all this.  There should be better research and better standard of care. As one of many women who has gone from surgery to surgery. I am now facing my eighth breast surgery and even though I know more now on what I have to do. 

Why have I not known this from the beginning? This has taken away so much from my life, my time with my family. I have a very supportive family but I can’t imagine the woman who faces my situation or any situation alone, my family feels the effects of all this day in and day out.

The pain I am facing due to the extrusion of my implant pushing through my breast and now trying to find the right physician to finally give me the right surgery. Number eight needs to be the end so I can live life without pain, don’t even let me mention health insurance!

We pay so much out of pocket on a monthly basis and ridiculous copays just to get DENIED. Our health providers don’t help, I have spent numerous hours and research on the phone with them only to get nowhere with every person I speak with.  I get told a different story every time, I am on the phone with them and to make matters worse they don’t have qualifying doctors in their network.  Blue Cross Blue Shield provided me 16 pages of plastic surgeons.  Half way through the list only 4 physicians none that have done over 50 DIEP Flaps.

Research has shown me the outcomes of physicians that due DIEP Flap in Florida with minimal infections or true credentials.  I need a doctor I can trust not one that’s going to put me in a place worse from where I started. I’ve cried and pleaded on the phone with insurance to help me. I have gotten nowhere, they just don’t care. 

In the last few months I’ve just been lost. At times I regret taking preventative action with all the issues I have endured, maybe I should have rolled the dice and chanced it. But then remembered “My BRCA2 gene has started the fight but I am going to finish it.”

Now that I have found the right procedure my insurance doesn’t want to cover it nor am I getting the proper guidelines to better assist me. Every day I live in pain, I can’t do any activities with my children due to my pain and swelling and were an active family. I can’t even begin to express how disgusted I am with this health system and how many channels you have to jump though just to get this done.  No one should have to face these dilemmas. There should be more positive outcomes. Do they even know what we are facing? I am taking a very big risk of my implant rupturing. My implant is fully exposed, my breast is purple! If my implant ruptures I will be facing many challenges.  Insurance companies should have a department with knowledgeable people who deal with just breast care.   

I will continue to fight the system. I know I am not alone in this matter or circumstance. You and I should have a choice on what doctor we can see that will help us feel whole again and recoup what we have lost as a women and as an individual. I will not quit and I will keep fighting. Let’s continue to work and educate. I don’t want anyone losing their sanity, health and lives due to circumstance like mine or others. 

Together we fight. 

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