My BRCA Story & Everything You Need For Mastectomy Recovery
If you’re new here, hello there! I am Elizabeth. I’m currently one month post op from my preventative double mastectomy with tissue expander reconstruction. Fair warning this is a LONG post. I opted to keep it all together instead of breaking up the content into multiple posts. A one stop shop of sorts. We’ll get into the details of my procedure and recovery and all the things that have made this process as good as it can be. First I’ll introduce myself and give you a little bit of the backstory as to how I got here.
I am 44 years old. I’ve been married for 23 years and have one son who is 19. I’m the owner of Abundant Life Collaborative and a Certified Life Coach specializing in personal growth and small business strategy. I feel so much peace now that I’m on the other side of this procedure. I am strong and healthy and I no longer have to live in fear of breast cancer. I get to live a happy and full life with the people I love and do work that I love. My hope in sharing my story and recovery journey is that you will feel empowered and encouraged in your journey too.
My story doesn’t start with me, it actually starts with my mom who is a two-time breast cancer survivor. Even though my mom wasn’t aware of any family history, years after her treatment and recovery, her doctors encouraged her to do genetic testing because she has 2 daughters, myself & my sister, so if there was a genetic component that would be good to know. Her genetic test came back positive for the BRCA2 gene mutation and shortly after that encouraged me to get tested as well. I did and I also have BRCA2. This was back in 2009 (it’s now 2023) so I’ve known for a long time, I just wasn’t ready for the prophylactic procedures that come with the diagnosis.
If you aren’t yet familiar with BRCA, in a nutshell there are two genetic markers for predisposition to breast and ovarian cancers that put you at extremely high risk. BRCA1 & BRCA2. Feel free to deep dive into the differences, but I have BRCA2 and my risk of developing breast cancer at some point in my life was about 86% and risk of ovarian cancer was about 13%. The standard of care for a BRCA diagnosis is removal of the ovaries & tubes and a double mastectomy to remove all breast tissue essentially getting rid of the risk of developing these two cancers.
As I mentioned before, I’ve known for 14 years that I carry the BRCA2 gene and that coupled with my close family history put me in the highest risk category. As scary as that diagnosis was, I wasn’t ready to go through surgeries yet. I wasn’t ready to be forced into menopause. I was afraid. The alternative was screenings every 6 months alternating breast MRI’s and mammograms with a follow up ultrasound. I did that for 14 years. Sometimes I was consistent with the every 6 months appointments and sometimes I wasn’t. Because I was afraid. The fear was there no matter what. Crippling fear. Fear of major surgeries and fear of “is this the scan they’re going to tell me I have breast cancer?” I am so grateful that every scan and screening I ever had came back clear, but there was a catalyst for this being the year I moved forward with my surgical procedures to get on the other side of that fear.
In the fall of 2022, I was seated on a jury for a month-long medical malpractice case: delayed breast cancer diagnosis, patient terminal. I have no idea how I even got on the jury. During selection, I had to disclose family history, etc… They knew my mom had had cancer and that I carried the BRCA2 gene. I should have been dismissed, but I wasn’t and for a month I listened to lawyers and medical professionals and the patient and her family and I made the decision then that as soon as the case was done, I was going to get the ball rolling on next steps. I have the ability to choose to protect myself from this horrific disease where so many don’t. I truly believe that getting seated on that jury was divine intervention.
Shortly after the case was done, at my annual GYN appointment where my doctor schedules whatever preventative screening is next, I told her I wanted to go ahead with the prophylactic procedures and that was that. Within a matter of weeks, I was scheduled to have my ovaries & tubes removed (bilateral salpingo-oophorectomy). I didn’t record much of that experience which I do regret and is the reason I’ve been keeping such detailed notes of my mastectomy procedure & recovery.
My ovary removal was on 1/23/23. It was an outpatient procedure and I was home a few hours later. Recovery went well for the most part. I was told a 2-6 week recovery period and assumed I’d be a 2 weeker. Not that lucky. I was up and moving around much more that I should have been (even though I didn't really feel like I was doing too much) so my recovery lasted beyond the 6 week period. Lots of cramping and my body yelling at me to SIT DOWN. I learned my lesson for this time around.
It’s been about 10 months in between my surgeries which I do think is longer than most, but this timing worked best for me to heal in between surgeries. Over those months there were multiple consults with my surgical team. I feel so blessed to have the best of the best working with me. My double mastectomy was on 9/14/23 and while there are several different reconstruction methods to choose from, I chose to do a nipple sparing double mastectomy & over the muscle tissue expanders that are filled with saline at weekly appointments for now and will be exchanged for silicone breast implants early next year (probably February 2024).
So now that you have some background info and the gist of the actual procedure, we’ll get into the nitty gritty of the before (prepping for surgery), during (hospital needs) & after (first month at home) and everything you’ll need to make this experience as good as it can be.
BEFORE/SURGERY PREP:
My plan the week before my surgery was to make it as easy as possible for my husband and mom to take care of me knowing I was going to be down for up to 6 weeks (everyone is different, but for me that timeline has beeb accurate). I think I nested more before this surgery than I did before my son was born! I organized the fridge and pantry, prepped a “nurses station”, got details to a friend who was setting up meal delivery for us, packed my hospital bag, and got all of my recovery items ready and accessible. My “nurses station” was set up in our dining room. To see it all set up, check out my BRCA2 highlight on my Instagram. I’ve also created an Amazon list with all of my recovery must haves linked here.
Nurses Station List:
Hair ties
Dry shampoo
Hand lotion
Chapstick
Miralax & Gatorade to mix
Dulcolax soft chews
Prescription meds
Pill organizer
Water cup with straw
Snacks: granola bars, applesauce pouches, crackers
Face wipes, hydrating mist, moisturizer
Electric Toothbrush, toothpaste
Throat lozenges
Body wipes, lotion
Kleenex
Mini fan
Small notebook & pen for tracking meds and recovery symptoms (anything to chat about at follow up appointments)
Vital measuring tools: thermometer, pulse oximeter, blood pressure cuff
DURING/Actual Surgery & Hospital Needs:
The day of my surgery I felt pretty calm and prepared and eager to wake up in recovery and start my healing journey. I had the same wonderful OR prep nurse I did with my ovary surgery and she remembered me. It was such a small thing, but made me feel really good about the prep process. Both my husband & mom got to come back before I went to OR. I held it together pretty good until the anesthesiologist came back to give me some pre-medication to relax me. Got a little teary, said my goodbyes to my husband and mom and they took me back. I remember basically nothing after that!
I woke up fairly quickly in recovery…no nausea at all which was the one thing I was really worried about. I didn’t even care about the pain, I just did not want to feel sick on top of it. I don’t remember being in pain (thanks nerve blockers!), but I was really thirsty and they fed me ice chips. I was in recovery for less than an hour then they took me up to a private room which was really nice. My husband and mom got to come right up to see me and visit for a while. I was on a clear liquid diet and I’m telling you right now, after about 24 hours of no food/drinks, that apple juice they gave me was the best thing I’ve ever tasted! As for pain that night, laying down, my pain was 2-3, but going from a reclined position to sitting or sitting to standing was standing 10/10 excruciating. The night in the hospital was rough. Every time I moved my IV monitor would go off. I definitely didn’t get much sleep, but I’m still glad I stayed.
My plastic surgeon’s PA (I love her!) came in to check on me first thing in the morning and assured me the surgery went perfectly. Nipples saved, expanders over the muscle. She was not thrilled to find out they were only giving me Tylenol and Motrin when Norco and Diladid were ordered by the plastics team. No wonder I was in so much pain that night, but I survived! My husband, mom & son came down pretty early to visit and wait with me until I got discharged. I was able to clean myself up a bit even laying in bed. It’s amazing how good a face wipe & hydrating mist and brushing your teeth feels post surgery. Once I got the official ok to be discharged, my mom helped me get dressed while and husband and son brought the car around. The car ride home was the first time I used my mastectomy pillow that has become my BFF & #1 recovery item. The car is not fun post op so having a pillow to protect from the seatbelt & cushion some of the bumpiness was so needed.
Since I stayed one night in the hospital, I needed to bring a few things with me. I read a lot about “what to pack” and used almost none of it, so below is what I packed and in bold is what I actually used.
Hospital bag:
Mastectomy pillow
Snacks (I was on a clear food only diet so didn’t need snacks)
Button up pajamas (I stayed in the hospital gown and went home in the button up and sweats I wore to the hospital)
Socks (I was wearing hospital no slip socks when I woke up!)
slides/slippers
Hand lotion
Drain belt (I was gifted a handmade one by the hospital)
Throat lozenges
phone/ipad & charger
Toiletries: toothbrush, toothpaste, face wipes, hydrating spray, moisturizer, hand lotion, chapstick
AFTER/First Month At Home:
For the most part, recovery has gone really well. I’ve had great support at home that has allowed me to really rest and heal. My husband works from home, my mom was able to stay with us for almost three weeks & our son pitched in too so all my nursing needs and home needs have been taken care of. I am not great at just sitting and resting, but if I learned anything from my prior ovary surgery, it’s that I need to let my people take care of me. Although I have healed slower than I’d like, I’m really proud of myself for really allowing myself to rest. Shoutout to the Gilmore Girls for keeping me company. My favorite cozy show. I’m convinced it has healing powers.
Next I’ll share a little recap of my recovery. Essentially this is the daily/weekly bullet point journal I’ve kept. Hopefully it gives you a good snapshot of the reality of this surgery & what to expect if you or someone you’re caring for will be going through a double mastectomy and recovery.
Day 1 (discharge day, back at home)
-Managing pain OTC & prescribed
-able to eat dinner night one
-slept well
-up to use the bathroom solo twice in night
-20 cc drain output both sides
Day 2
-pretty much the same just managing pain and resting. Only getting up from the recliner to go to the bathroom.
-bronchial irritation from breathing tube. Phlegmy cough.
Day 4
-woke up at 4am with a death grip on my back scratcher! Was not prepared for how itchy I would feel post anesthesia.
-REALLY bloated
-bout of nausea & small headache
-finally able to poop a little. Miralax and dulcolax soft chews help.
-coughing less
Day 5
-nausea, vomiting, lots of naps
-not much of an appetite
-was hoping to get drains out at one week post-op but still draining over 40cc per side in 24hr period (to be removed they have to be under 30cc for 72 hours)
Day6
-no nausea today. Pretty sure it was the antibiotic and not enough food.
-post op with breast surgeon went well. Said surgery was perfect. Pathology came back clean but there were abnormal tissue cells on both sides that very likely would have become cancer in the future. She said “you dodged a bullet here. Be so glad you did this now. This wasn’t for nothing.”
-post op with plastic surgeon went well too. Everything is healing as it should. Drains not removed.
Day 9
-rough nights sleep. Nausea & pain. Had to take leftover Norco from BSO because I ran out earlier in the day.
Day 10
-feeling pretty good today. Swelling mostly gone. Alternating Motrin and Tylenol every 2 hours. Pain is mostly at the drain sites.
Day 11 & 12
-lots of nausea, drain on the left back to red with blood (should be orangey-yellow) at this point. Likely too much activity (went to a friend’s to have her help wash my hair) & clots breaking up.
Day 13
-(afternoon) left drain line is looking better, very low output. Much less nausea today.
Day 14
-2 week post op- DRAINS ARE OUT. Right one didn’t feel anything but a little squirminess. Left side hurt SO bad. First fill 120cc (just an exchange for the air that was placed in the expander during surgery). Feels a little “sloshy”. The car is terrible. TERRIBLE.
2 weeks post op:
-I’ve been doing arm exercises a few times a day to regain my range of motion.
-I went cold turkey meds to listen to body. In all honesty, no pain meds touch this pain. Not the prescribed narcotics or OTC meds like Motrin and Tylenol. I feel the same if I take it or if I don’t.
-I have a spot on the back of my left arm that gets VERY angry when I move it the wrong way. Like sharp, stabbing nerve pain.
-Right expander, sternum pain started late Saturday morning. Hurt so bad. I didn’t want to take meds, but I was miserable. I took Motrin but it didn’t help. By 9pm the pain was mostly gone. Coming & going since.
-Left nipple is scabbing from lack of blood supply so will be keeping an eye on that.
-Both sides (under arms) indenting/rippling now that swelling has gone down. Alarming to see, but will be filled by fat grafting during exchange surgery.
-Emotions hit Sunday with my mom leaving and my birthday being this week. Going to ask about a therapy referral.
3 weeks post op:
-Finally caved & got some low dose THC gummies. GAME CHANGER. Infinitely better than the narcotics and OTC meds. Nothing has touched the pain. My husband went to a local dispensary & got me Wyld brand gummies: blood orange for day, elderberry for night. I have been shocked at how well they work. So happy to finally have something that manages my pain and helps me to sleep.
-I didn’t get a second fill this week. They want to see a little more healing to the left side first. Was sent home with antibiotic ointment & gauze for left side.
-Cleared for a few more range of motion arm exercises and short, slow neighborhood walks.
4 weeks post op:
-Left side is healing well now with the antibiotic cream. Blood supply has returned & they aren’t worried about it which makes me not worried about it.
-Went to Disneyland in the wheelchair to get out of the house for a while.
-The car is still terrible. I feel every bump in the road and the fluid in my expanders sloshes around and every nerve feels like I’m being mildly electrocuted.
-Was able to get a small fill this week of 90cc on each side. This puts me at 210cc. Goal is 500-600cc to get me to my desired size.
-Had my first therapy appointment to help process the emotions surrounding this surgery and recovery.
So that’s everything! My story, procedure, recovery, and all the things I’ve found helpful along the way. If you’ve made it to the end of my rambling brain dump, thank you for being here! I hope that by sharing my experience, I can be a source of encouragement & resource for you on your journey as well. Please don’t hesitate to reach out with any questions at all. Sending love and light your way.
-Elizabeth
