BRCA+ and Mastectomy Must-Haves

Hey Family, Friends, and Fellow Breasties!

With our surgery approaching we have been putting together a list of items we need to purchase before we go under. The items listed under post-surgery are things doctors and fellow breasties have recommended for post-op healing. Once we are on the other side of our surgery we will update this section, add things we may have left off, and let you know if all of these were necessary. Everyone's healing process is different so things we may LOVE for recovery you or your loved one might end up not liking or using. The rest of this page is dedicated to friends and family members of Breasties who want to support their loved ones from afar. This list is some ideas we think would be so nice to receive and show your loved one you care and support them through this big life change.

We hope this is helpful!

xxx Ivy & Eve

Post-surgery Must-Haves:

What to bring with you to the hospital:

• Car seatbelt pillow for the ride home post-surgery

• Post-surgery pillow

• Post-surgery bra - our hospital supplies one post-surgery but just in case!

• Throat lozenges - (helps with dry or sore throat from anesthesia)

• Compression socks

• Lip balm - We suggest Aquaphor plus it can go on any dry skin after surgery

• Button up pajamas and loose drawstring bottoms for wearing in the hospital recovery

• Slippers

• Toiletries

• Books and/or magazines 

• Charging cords

• Headphones

Have ready at home:

• Body wipes 

• Dry Shampoo

• Wedge pillow - great if you are recovering in a bed

• Recliner chair - if you don’t want to sleep in a bed for recovery

• Cute water cup with straw for easy hydration!

• TV tray - to fit on your lap for meals

• Robe with drain packets 

• Zip up hoodies

• Button-up shirts

• Phone charger

• Drain pocket belt and/or Shits/Bra/Robes that come with drain pockets

• Sleep eye mask

• Extra post-surgery bras for when you need to wash one

Care package gift ideas & ways to support from afar:

• Boob everything! Boob mugs, shirts, cards, jewelry

• Comfy button-up sweaters, pajamas, and tops

• Nice smelling candles - you can never have too many!

• Flowers

• Spa day gift card - pre-surgery massage or facial!

• Mani/pedi for before surgery (they may not be allowed to get nail polish before surgery but a nice nail buffing/cleanup is always nice!)

• Self-Care Products - sheet masks, under-eye masks, lipgloss, etc.

• Dry Bar gift card - great for the week after surgery when they may not be allowed to shower with their drains

• Doordash/Grub Hub/Uber Eats etc. - So they can order meals without having to cook

• Cozy socks

• Cute slippers - easy to slide on

• Soft blankets

• Heartfelt note or card

• Frozen meal delivery - Great for those who don’t have someone home to cook meals for them. 

• Sleep eye mask

Check out our other related posts:

Our BRCA2 Journey and Why We Choose to Have Prophylactic Double Mastectomies

Hello Friend,

If you find yourself on this blog post, there are probably two reasons you are here…One, you are a friend/family member/or follower and want to know why we elected to have this surgery…Or you fall into the second group who are fellow Breasties about to go on their own surgery journey and are looking for as much information as possible.

If you fall into category one, know that we have spent the last 8 years coming to this decision. We have spent hours and hours researching, talking to many doctors, praying, soul-searching, and stressing about this surgery. After all of this, we are confident that this is the right step for us and our loved ones in the future, so if you feel differently, we respectfully ask that you keep this opinion to yourself, as these are our bodies and our choices to make. We are happy to discuss what we know with you if you want to learn more.

If you are a fellow Breastie, know you are not alone; we are here for you! Please feel free to email or DM us on Instagram. We will keep adding information as we go through this process so you can find helpful information more easily! We have a great resources page linked HERE. You are strong and so brave, and we are cheering you on! 

*****WE ARE OBVIOUSLY NOT MEDICAL PROFESSIONALS. So please take what we say as how we interpreted our research and use the links we provide on our resource page for more in-depth information written by experts. Everyone's journey is different and it’s important you make decisions based on your own research and doctors recommendations. There is no right or wrong way of handling a BRCA+ diagnosis. You have options and what you do or do not do is YOUR choice!*****

Now, get ready for story time…

BACKGROUND AND FAMILY HISTORY

So…We have had a long history with cancer...Growing up, our most fabulous Grandma Gloria wore massive glamorous wigs. She also had her "secrets," which were gel breast prosthetics (think raw chicken breasts; that's exactly what they looked like). We knew she had these things because she had breast cancer in the 1970s when she was in her early 40s. Back in those days, the only option was to cut out the cancer. So that's what she did. She recovered, went on a fabulous vacation to Hawaii, and went on with her life. We knew cancer sucked, but we were little, and Grandma was healthy and looked like she walked out of the pages of Vogue. It was just a part of her story. 

Grammy G. looking fabulous in Hawaii after her surgery!

Then, when we were in our early teens, our fabulous, fearless, jet-setting Aunt Mini was diagnosed with breast cancer. She fought it HARD, and for a glorious year, she was cancer-free…then it came back. It had spread, and though she fought for a long time, it eventually took her in 2009. When she died, we were both in our late teens. We had seen what cancer had done to our strong and infectiously vibrant Aunt and to our family. It was terrible watching our Dad and our Aunts and Uncles see their sister get thinner and weaker and her life become taken over by doctors appointments, clinical trials, alternative medicines, cleanses, etc.

In 2012, over Thanksgiving, Grandma Gloria felt ill, and when she went to the hospital, they found massive cancerous tumors in her ovaries. They removed the tumors, and we had one more year with Grandma before cancer took her too. 

In 2014, Eve found a lump in her breast, and at the same time, her doctor found a tumor on her uterus. One fearful week of lots of testing later, a surgery to remove the uterine tumor, and she was in recovery. Through ultrasounds and an MRI, the lump in her breast was deemed not cancerous, and the uterine tumor that was removed was also found to be not cancerous. YAY!

Recently, our other two amazing Aunts on our Dad's side have gotten cancer. One with breast cancer and the other with cancer in her knee. Luckily, both are healing and cancer-free again.

Like we said, we have a long history of cancer in our family….

WHAT IS BRCA2?

Everyone carries the BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2). These genes help repair damaged DNA and suppress cancer. BRCA1 and BRCA2 are gene mutations that some "lucky" people carry, where the gene doesn't do its job. Therefore, you have a higher risk of getting cancer. Even though the gene mutations are named after BReast CAncer, it raises your chances of also getting ovarian cancer, skin cancer, and several others. This does not only affect women; it also increases men's chances of getting a variety of cancers, including breast, prostate, and pancreatic. 

If you are a carrier of BRCA1 or 2, you have a 36-85% lifetime risk of breast cancer. This % excludes if you have a family history of breast cancer, which can increase it further.

HOW AND WHY WE GOT TESTED?

Because of our extensive family history with cancer, we decided the more information we knew, the better. After Eve’s scare in 2014 her doctor (who had also been our Grandma's doctor) suggested that with our family history, we get tested for the BRCA gene mutations. 

This was still relatively new, hard to get, and even harder to get your insurance to cover. We were told our Dad had to get tested first in order to get this done ourselves. If his test results came back positive, we would qualify to have the testing covered by insurance. So…we marched our Dad into the OBGYN (it was pretty funny, tbh, to see our Dad sitting in the waiting room with a bunch of women), and a few weeks later, his test came back positive for BRCA2. Because this is genetically passed down, we would each have a 50/50 chance of also carrying the BRCA2 gene mutation. We took the tests, and a few weeks later, we got the news that we were both positive for BRCA2. Combining our BRCA2 and our family history, our lifetime risk of getting breast cancer is up to 95%...not super great.

THEN WHAT?

For whatever reason, we weren't at all surprised when our test results came back positive. With our family history and just the way things seem to go with our family, we just prepared for the worst and got on with our lives. Our doctor told us that we were both still young (Ivy-24 and Eve-26), and other than getting ultrasounds until we were 30 and then MRIs and mammograms, we only needed to think about taking more invasive preventative measures once we were in our 30s. 

Fast forward- We are now in our 30s….and the enormity of our diagnosis finally set in.

WHY DID WE DECIDE TO HAVE SURGERY NOW?

Since 2016, eight years ago, we have been trying (and mostly failing) at doing our preventative screenings. We initially were recommended to have mammograms once a year and MRIs once a year. Now, it is suggested for preventative screenings, you alternate these every 6 months! If you have yet to have a mammogram or MRI, know both are uncomfortable in their own way, expensive, and stressful. After 8 years of pretending BRCA2 wasn’t a big deal we knew burying our heads in the sand any longer was not the smartest option for our health. We realized there were simply two options…do something or do nothing…we decided to take control of our situation, get educated, and start this journey officially.

If you know us or have been following us over the years, you know we are best friends, but like all sisters, we have had our fights and arguments. But in the end, we have always been each other's ride-or-die (see dinosaur photo as proof, haha). Eve was the one to take the initial steps to see what the process for the preventative double mastectomy would be. Once she got the information we needed, we decided it was time we both got the ball rolling. Not only do we feel confident in this decision because this procedure will decrease our risk from up to 95% to 1-2% (WAY lower than even the average woman without BRCA+'s risk of getting Breast Cancer) but we also think this is the best way forward for our mental health (no more scan-ziety every 6 months or panicking every time you *think* you feel a lump), and to ensure we will be here for each other, our friends, and our family for MANY years to come.

WHERE WE ARE NOW…

Since deciding we wanted to do this procedure, we have had several appointments. We both had to meet with our Surgical Oncologist, who will be performing the removal of all the breast tissue along with our nipples. Not everyone has to have their nipples removed; there are pluses and minuses to both. We decided to remove them as one of our Aunts had a small tumor found in the back of her nipple. We don't want to risk leaving them and later finding cancer on them, so we're going for the "Barbie" look. With this, we won't have to wear bras and can wear see-through shirts! Woohoo, what a plus! 

Next, we had to meet with our Plastic Surgeon. Here, we learned about our options; there are so many that we will explore in another post soon. We decided, based on our doctor's recommendations, to do a complete double mastectomy with expanders over the muscle, not direct to implant. With this option, we will have our breast tissue removed and two to four drains put in by our Surgical Oncologist, then our Plastic Surgeon will come in and fill the breast area with a deflated balloon-like expander and stitch us back up. How this works is the Plastic Surgeon will slowly inflate the expanders with a saline solution to slowly fill the space to the size of breasts we want for the implants. This will take several weeks, and the exchange surgery (where we get the more permanent implants) cannot happen before 3 months, so we have time to heal and stretch.

We also had to meet with an Occupational Therapist. This appointment went over exercises we should be doing before our surgery, along with what we can do after surgery when we have been given the okay by our doctors. Stretching and exercise leading up to surgery is important since we will have limited mobility in our arms and upper body for a while afterward. And making sure we do our stretches and get moving again is important afterward because with limited mobility and discomfort, many people get super tight and hunched inward from not moving. We both already struggle with our posture so, we DEFINITELY don't want to look any more like Quasimodo!

The final appointments will be bloodwork a few days prior to surgery, a meeting with our anesthesiologist, and another follow-up with someone from our Oncology team before the big day. We also still have another pre-op appointment scheduled with our Plastic Surgeon to go over our plan of action and sign papers. We will pick out our implants, (there are lots of shapes and sizes), after the surgery and once we start to have our expanders filled. Although this part is cosmetic, a double mastectomy is not to be confused with a boob job. 

As our surgery approaches, we have been trying to get to the gym a few times a week to strengthen our chest, arms, and core. The more fit you are, the easier the recovery is, they say. 

Besides appointments and strength training, we have been gathering supplies for the surgery, things like button-up shirts (we won't be able to lift our arms to pull clothing on), seatbelt pillows for the car rides, recliners (we were so lucky that we were given recliners from a local nonprofit Pink Chair Project RVA), dry shampoo, body wipes (we can’t shower until our drains are removed), sleeping eye masks, etc. You can find all of this on our BRCA+ and Masectomy Must-Haves page. We also have been trying some alcohol-free wines that we can enjoy leading up to and post-surgery for when we need a “restorative” (we will share these with you soon).

SHOULD YOU GET TESTED FOR BRCA1/2?

This is really up to you. Getting tested gives you the knowledge but can also be a scary diagnosis. Only take these tests when you feel ready and have a sound support system.

If you have a strong family history of cancer, we recommend talking to your doctors and genetic counselors to see if you should get tested. Nowadays, it's much easier to get tested; even 23andMe has an option to test for these, although we recommend further testing with your doctor to confirm these results. Several other gene mutations besides BRCA1/2 will increase your risk of cancer(s), so if you're worried, talk to your doctor about getting tested for a full panel. 

If you know your genetic mutation and your family history with cancer you can calculate your lifetime risk on sites like CanRisk BOADICEA.

Just remember these results should not be taken as fact, always consult with your doctor.

FINAL THOUGHTS FOR NOW…

We are so lucky that we know about our BRCA2 mutation and that we have had the time to learn about our options and choose to take preventative steps for ourselves. So many people are not as fortunate. Once we have this surgery done we can then focus on other preventative measures for the other cancer risks we have, but for now, we are allowing ourselves to focus on this upcoming surgery and healing. If you're a fellow Breastie we hope what we shared is informative, and helpful, and gives you some peace. Know you have so many options and having a preventative double mastectomy might not be the right choice for you. Friends, family, and followers thanks for all your support over the years. We hope our story spreads awareness of these genetic mutations that affect so many people across the globe. 

HELPFUL LINKS AND RESOURCES:

We have put together a list of websites and resources that may help you if you're also diagnosed with a cancer-related gene mutation. This list includes everything from books to Instagram accounts that helped empower and inform us to make this decision. 

Click here for our resource page!

Cheers to no more bad boobies in 2024!

xxx Ivy & Eve

Check out our other related posts:

Resource Page: BRCA+ & Mastectomy

Below we have put together a list of websites and resources that may help you if you're also diagnosed with a cancer-related gene mutation. This list includes everything from books to Instagram accounts that helped empower and inform us to make this decision. 

If you have any other resources, links, or accounts for us to add please leave a comment below or shoot us an email or DM us on Instagram!

xxx Ivy & Eve

BRCA+ RESOURCES TO LEARN MORE:

• https://www.nsgc.org/

• https://www.cancer.org/

• https://www.facingourrisk.org/

• https://www.masseycancercenter.org/patients-and-families/patient-resources-and-support-services/inherited-cancers/the-genetics-of-ovarian-cancer/hereditary-breast-and-ovarian-cancer-syndrome

• https://www.dol.gov/sites/dolgov/files/ebsa/about-ebsa/our-activities/resource-center/publications/your-rights-after-a-mastectomy.pdf

• https://brca.ucsf.edu/patients/resources

APPS:

• The Breasties

FACEBOOK GROUPS:

• FORCE Hereditary Cancer Community

• BRCA Sisterhood

YOUTUBE ACCOUNTS:

• Paige Previvor

• Samatha Nicole

• Finding inner Pearce

• Becky Excell

• Teaching in Pearls

• Screw You Cancer - by Glamour Magazine

INSTAGRAM ACCOUNTS:

• @the_breasties

• @dani_trops

• @dianagregoriades

• @paige_previvor

• @findinginnerpearce

• @lauren_syndi

• @mycancerchic

• @ohheybreastie

• @brcababeboston

• @theebooblessbabe

• @forthebreastofus

BOOKS:

• Dangerous Boobies by Caitlin Brodnick

• Probably Someday Cancer by Kim Horner

• Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew: A Memoir by Amy Byer Shainman

PODCASTS:

• Too Young for this sh*t

• Bold like Her

BLOGS:

• My Cancer Chic - https://www.mycancerchic.com/

• BRCA Support - https://brcasupport.com/

• Lauren Syndi - https://laurensyndi.com/category/health/brac1/

• North Carolina Charm - https://www.northcarolinacharm.com/search/label/double-mastectomy/

• Jennifer Garam - https://www.jennifergaram.com/cancer-blog/2021/10/25/what-you-need-for-mastectomy

• Liz Wessel - https://www.lizwessel.com/prophylactic-mastectomy-blog

• The Road Les Traveled - https://theroadlestraveled.com/13-things-to-know-before-undergoing-double-mastectomy/

FITNESS:

Always consult with your doctor before doing any workouts to make sure you are healed enough to do these safely!!

• Pre- and Post Surgery workout - https://cancer.ucsf.edu/sites/cancer.ucsf.edu/files/bcc/treatment/exercises_mastectomy.pdf

• Post-op 12wk free - https://watch.thelimitfit.com/12-week-post-mastectomy-breast-cancer-series

• Post Mastectomy Yoga - https://www.youtube.com/playlist?list=PLMTZH2lG-os2SAgjVW5zSbTgCppG_R4K1

• Breathing exercises - https://www.youtube.com/watch?v=SM9DnUhu3Lw

COMPANIES THAT CAN PROVIDE SOME ASSISTANCE, COVERED BY INSURANCE, OR DISCOUNTS:

• https://www.anaono.com/pages/insurance-coverage - Insurance coverage post-surgery bras.

• https://www.pink-perfect.com -  Insurance covered ready-made and custom prosthetic nipples.

• https://www.brcastrong.org - Free care package includes post-surgery bra, robe with drain pockets, shirt with drain pockets, and sometimes other free goodies.

• https://www.pocketsofhope.com/request-a-hoodie.html Free zip hoodie with drain pockets. 

• https://handful.com/pages/breast-friend-forever - 30% off bras.

Check out our other related posts: