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i want to tell you a story about being navigating healthcare and advocating for myself as a young woman in the US.
after testing positive for the BRCA2 mutation, which gives me an 87% chance of breast cancer, i decided to get a preventive double mastectomy.
i& #39;d mulled over the decision for years, & after speaking with my oncologist & assessing my risk, i knew it was the right decision for me
i& #39;d mulled over the decision for years, & after speaking with my oncologist & assessing my risk, i knew it was the right decision for me
for reference, when calculating lifetime risk, a team of oncologists and geneticists went through my family history, taking into account my family& #39;s history of cancer, my age and lifestyle, and many other factors.
needless to say, it& #39;s thorough.
needless to say, it& #39;s thorough.
i weighed many factors, including my own health (really good) and age (26 at the time), and knew that i& #39;d rather be proactive with my health while i& #39;m young than have to be reactive when i& #39;m older.
i felt confident in my decision, and was supported by my oncologist.
i felt confident in my decision, and was supported by my oncologist.
then i started searching for surgeons.
i& #39;d get on the phone with schedulers and nurses and tell them that i& #39;m BRCA2+, but when i mentioned my age they almost always ended the call, saying that the surgeon wouldn& #39;t operate on or meet with me.
i& #39;d get on the phone with schedulers and nurses and tell them that i& #39;m BRCA2+, but when i mentioned my age they almost always ended the call, saying that the surgeon wouldn& #39;t operate on or meet with me.
several surgeon offices wouldn& #39;t even do a *consultation* with me.
"you& #39;re too young"
"you don& #39;t have cancer yet"
"you don& #39;t need to do this"
they said this while knowing i have an 87% chance risk of breast cancer. they refused to take me seriously.
"you& #39;re too young"
"you don& #39;t have cancer yet"
"you don& #39;t need to do this"
they said this while knowing i have an 87% chance risk of breast cancer. they refused to take me seriously.
facing a BRCA diagnosis is difficult. facing that diagnosis while having to advocate for myself to be taken seriously was...almost insurmountable. i almost gave up.
my health was on the line and I. Almost. Gave. Up.
my health was on the line and I. Almost. Gave. Up.
i finally found a surgeon who immediately took me seriously. she listened to all of my concerns & agreed that a preventive double mastectomy was a good move for me.
it was such a stark difference from my other meetings that i cried after meeting with her for the first time.
it was such a stark difference from my other meetings that i cried after meeting with her for the first time.
fast forward a year and i& #39;m finally healing from my last breast cancer prevention surgery with her.
throughout every step of the process, i felt heard. when i was in pain--more pain than i expected--she immediately listened and helped me.
throughout every step of the process, i felt heard. when i was in pain--more pain than i expected--she immediately listened and helped me.
i never felt like i had to prove anything to her, from my BRCA diagnosis to my pain levels, because i know that she is my ally and here to support me.
this is what a doctor should be to a patient.
this is what a doctor should be to a patient.
now that i& #39;m on the other side of surgeries, i& #39;m so frustrated that i had to advocate for myself to the extent that i did.
i was gaslit, ridiculed, and flat out ignored by so many surgeons.
i was gaslit, ridiculed, and flat out ignored by so many surgeons.
when telling doctors that i& #39;m in pain, my immediate thought shouldn& #39;t be "i hope they believe me" but rather "they will help me"
in a 2014 survey of over 2,400 women, 91% of women felt the healthcare system discriminates against them. 50% were told & #39;the pain is in their head& #39;.
in a 2014 survey of over 2,400 women, 91% of women felt the healthcare system discriminates against them. 50% were told & #39;the pain is in their head& #39;.
that said, i know i& #39;m privileged. it is infinitely more difficult for Black patients to be heard in the medical space due to structural discrimination and racism.
a 2012 study showed that Black patients were 22% less likely than white patients to get medication when in pain.
a 2012 study showed that Black patients were 22% less likely than white patients to get medication when in pain.
i& #39;m so lucky that i found a surgeon who listened to me. far too many people don& #39;t get that option. they live with their pain or ignore their medical concern because it is *too exhausting to work day in and day out to change the minds of those who should be taking care of you*.
oh my god a typo in the VERY FIRST TWEET GAHHHH
a couple of people have asked who my surgeon is. her name is @annepeledmd— she is my role model and one of the best oncoplastic surgeons in the world. i am so, SO grateful for her every single day. i can’t recommend her enough.
