My visit with the "BRCA whisperer"...
For those of you who haven’t read Part 1 of my experience with The BRCA whisperer you will definitely want to click here to learn all who she is and why you should go see her!
I shared all about why I went to see her, how she became “the BRCA whisperer,” and my thoughts regarding a revision surgery, and more!
When I first heard about the BRCA whisperer, I felt like I was let in to this secret club that all of my friends were apart of and I somehow had missed the memo.
THANKS A LOT BREASTIES…. cough Karo, Bianca, Bri, Leslie, etc cough cough
I am just kidding but seriously ALL of my friends seemed to already be patients of Dr. Julia Smith. Many of which do not have BRCA or genetic mutations at all - Dr. Julia Smith is just THAT good.
On my way to seeing her, I was NERVOUS.
I have fallen into the “best doctor ever you need to go see them ASAP” trap way too many times. My plastic surgeon was supposed to be “the best ever” and I ended up being really disappointed with my results. My gyno-oncologist was supposed to be “the best ever” and she ended up really falling short.
***I swear its not me and I swear I don’t have completely unrealistic expectations lol !!!!***
So I was nervous because I REALLY didn’t want to be disappointed again.
I got to her office and luckily only waited 10 minutes because Bri gave me the ultimate hospital hack:
CALL AHEAD AND ASK HOW FAR BEHIND YOUR DOCTOR IS RUNNING!!! Doctors typically run over and hour late so if you call ahead and get a nice receptionist, they will check you in over the phone and give you a new time to come in. BLESS.
When it was my time to go back I was legit sweating. As I changed into my hospital gown I was SO nervous awaiting her arrival. I felt like I was meeting a celeb!! L O L
When she walked in, all of my worries washed away. She has SUCH amazing energy. She made me feel so validated. and heard. She is sooo calm but also direct and efficient.
We started by going over my risk, the procedures I had done, what my current worries are and then she did a quick assessment of my Foobs and Tubes. (well not really my tubes but she felt around my lower abdominal area to make sure everything felt alright.)
The list of my current concerns:
Hormones - my hormones have been completely unbalanced ever since my surgery. From weight gain, to unwanted hair growth, hormonal breakouts, anxiety and mood swings - it has been a whirlwind! Dr. Julia Smith was astonished that I have been living like this for over a year. She told me that these concerns were VERY valid and needed to be fixed IMMEDIATELY. Every doctor (up until Dr. Julia Smith) has completely written me off, told me these symptoms are unrelated, or told me “they will get better with time.” Ugh. I am SO glad to finally have the validation from a doctor and have someone on my team who is actively helping me improve my health and life. It feel so good to finally be heard.
Reconstruction - after taking a look at my reconstruction results she made it clear that my desire to have a revision surgery is completely warranted. She agreed that the indents, placement, and concave areas should definitely be fixed and that my discomfort made sense! She referred me to Dr. Rachel Bluebond- Langner.
Back Pain - speaking of discomfort! Due to how my implants are placed and them being under the muscle has led to major back pain. I am completely hunched over, tight, and my back is constantly hurting. Another issue she said should be fixed immediately.
Lower abdomen pain - I have been having intense pain in my lower abdomen for over six months. I have been feeling bloated and uncomfortable. My hormones are all over the place. Cystic acne, low energy, and I can just TELL something is off in my body. My Gynecologic Oncologist suggested that I take out my IUD to see if that would help. It didn’t help with my acne, I gained MORE weight, and the pain switched from the left side to the right. WEIRD. Dr. Julie Smith was NOT happy so she gave me a new Gynecologic Oncologist to see and an Endocrinologist … YAY.
Nutritionist - as we figure what is going on with my body, I told Dr. Smith that I would like to see a nutritionist. With my hormones and acne all out of whack, I would like a professional to be able to tell me what to eat and how to manage these symptoms through diet. I just want to feel happy, comfortable and confident in my skin!! She said an endocrinologist would have a great recommendation for me and I think this will give me a sense of control over what is going on. I don’t know if it will help, but it definitely can’t hurt…
After going through everything together, she sat me down and gave me a long list of doctors I need to start seeing regularly and some doctors that can help with the above symptoms.
The list of doctors she recommended I see:
this will help with: lower abdominal pain, hormones, etc.
this will help with: lower abdominal pain, hormones, etc.
this will help with: Dr. Smith also explained that those of us with BRCA mutations are also at higher risk for pancreatic cancer so she suggested seeing a Gastroenterologist.
this will help with: cystic and hormonal acne. Dr. Smith also explained that those of us with BRCA mutations are also at higher risk for melanoma, so we should be seeing a dermatologist regularly.
this will help with: Dr. Smith explained that those of us with BRCA mutations are also at higher risk for eye cancer. WTF. So seeing an Ophthalmologist early on can help stay on top of that.
this will help with: reconstruction results, back pain, food placement, etc
this will help with: hormone imbalance
I have never felt more validated in my life 🙌🏻✨ Not to be dramatic, but this one visit with Dr. Smith changed my life. For the past year I’ve brushed everything off. From hormonal imbalance and breakouts, lower abdominal and back pain to fucked up reconstruction for a combination of reasons. I felt like it could always be worse and I had a lot of Previvor’s guilt. Also, my old team of doctors just kept brushing me off - so I’ve lived unhappy and uncomfortable for over a year. In just one appointment, Dr. Smith made me more validation than I ever have. She told me that my feelings and concerns are completely valid, told me what I am experiencing isn’t normal and needs to be fixed immediately and gave me a list of SEVEN doctors to go see to fix it all. It’s a long road ahead (as it is for sooo many of us in this community) but I’m really grateful to finally feel heard and have someone pushing for me and who I know has my back (and front!) It just feels so good to have an action plan.
To anyone navigating their own health issues:
Your feelings are valid.
You are not crazy.
You deserve to be comfortable.
You have the right to be happy.
If something isn’t working, fix it.
If one doctor doesn’t give you the validation or care that you need, IT IS MORE THAN OK to find a new doctor.
Just because someone else might have a later stage diagnosis or is struggling with something you think is heavier than what you currently are carrying - that doesn’t mean YOUR struggles aren’t real or that YOUR pain isn’t also valid.
This is not a comparison.
Our journeys are each our own.
Life if short, and we ALL deserve to live our best lives NOW!
I posted about this on my Instagram if you want to check it out.
I left and immediately ran home to call these doctors to make appointments ASAP. I have my first two appointments NEXT WEEK. I have an appointment with a new plastic surgeon (to discuss a revision surgery!) and with an endocrinologist to discuss my hormones etc!
As always, I promise to keep you posted!!