10 Things We Wish We Knew Before Our Preventative Double Mastectomies

10 Things We Wish We Knew Before Our Preventative Double Mastectomies

1. Check with your doctor before purchasing post-surgery bras. 

   We were not allowed to wear compression bras or anything fitted around the chest area for several weeks after surgery. Because of this and post-surgery swelling, the bras we purchased were too small for our initial recovery. Our hospital provided us with Masthead Pink Surgical Bras. For reference, Ivy typically wore a size Medium sports bra pre-surgery and was given an XL, and Eve wore a size large and was given a 2XL for recovery. Some people may be allowed or required to wear compression bras, so just check with your doctor before purchasing yours!

2. You can change into your own clothes while you’re in the hospital.

   We ended up staying in the hospital for 3 nights, and by day 2, we were really, really sick of our bare butts hanging out of our hospital gowns every time we got up to go to the bathroom. Plus, those gowns are scratchy! Eve finally asked her nurse if she could change into her own sweats, and they said, "Of course." We don't know why they never tell you that you can do this, but it was such a relief to change into our comfy clothes and wear UNDERWEAR again! Lol

3. The little things you can't do right after surgery. 

   Putting your hair in a ponytail/bun by yourself is almost impossible for the first month. 

4. Bloating after surgery is normal. 

   Stay hydrated, but don't be hard on yourself. Your body is healing and working hard for you! Bloating can last up to 12 weeks. If you're concerned with specific areas of swelling, talk to your doctor. Lymphedema is a risk with this surgery, even if you do not have lymph nodes removed or biopsied. 

5. The timeline for expander fills is different for everyone. 

   We thought that once we got your drains out, we would get fills every week until our expanders were filled to capacity. This isn't the case. At first we got fills every week, then every other week. As our expanders get fuller, the discomfort after each fill was more noticeable, so the fills were smaller each time to give our skin more time to stretch. This may not be for everyone, and we hope growing new foobs is pain-free for you!

6. Exercise/weight restrictions aren't always lifted after the standard 6 weeks. 

   Some doctors will allow sooner, but some will also require longer than 6 weeks depending on your fill schedule and the general healing of the area. 

7. You may NOT be able to fill up the entire amount of your expanders.

   It all depends on many factors: how much skin was removed, how tight your skin is, your pain tolerance, and how well/fast your stitches and skin heal. 

8. Your body may have a hard time regulating temperature. 

   We both get hot easily after our surgeries. We ran cold pre-surgery, but we frequently get sweaty or overheated post-surgery.

9. Your armpits can become harder to shave.

   The shape of your armpit can change and gain creases, dips, or swelling making it hard to shave completely.

10. Healing isn't linear.

    We have both had ups and downs since our surgery. Some weeks, we feel great, and others, one of us is having a hard time. Mentally and physically, this surgery is a BIG DEAL. Try to remind yourself that you are awesome, brave, and strong. Give yourself some grace.

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BRCA+ and Mastectomy Must-Haves

Hey Family, Friends, and Fellow Breasties!

With our first two surgeries (preventative double mastectomy and exchange surgery) behind us, we have put together a list of items we recommend purchasing before you undergo a mastectomy. The items listed under post-surgery are things doctors and fellow Breasties have recommended for post-op healing along with things we found necessary for recovery. 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 bottom half of this post is dedicated to friends and family members of Breasties who want to show support for their loved one going through this big life change. This list was created from things we were grateful to have received (thanks everyone!!) and some other other ideas we think would be nice to show your loved one you care and support them .

We hope this is helpful!

xxx Ivy & Eve

Please note if you use our Amazon affiliate links, we will donate the proceeds to one of our favorite breastie Non-Profits, BRCAStrong.

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 - Talk to your doctors beforehand to see if they provide any. Ours gave us two, one we wore out of the hospital, and an extra to take home. If you need to buy your own, SIZE UP if your doctor doesn’t want you to wear compression.

• 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

• Soft washable blanket (having a nice non-hospital blanket made our 4 days in the hospital feel less sterile and more cozy)

• Toiletries

• Books and/or magazines 

• Charging cords

• Headphones/Book

Have ready at home:

• Body wipes 

• Dry Shampoo

• Wedge or U-shaped pregnancy 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

• Zip up hoodies

• Button-up shirts

• Phone charger- the longer the cord the better!

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

• Sleep eye mask (this was very nice to have)

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

Care package gift ideas & ways to support from near and far:

• 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 or after surgery (they may not be allowed to get nail polish before surgery but a nice nail buff/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 or be able to style their own hair

• 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

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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 spent 8 years coming to this decision. We 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 was 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 OUR 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 hers looked like to us as kids). 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 on 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, 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. Aunt Maria had breast cancer, and Aunt Rahnee had cancer in her knee. Our Aunt Maria is thankfully cancer-free (YAY!), but we devastatingly lost Aunt Rahnee to cancer this spring.

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 percentage 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 Aunt and 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 was up to 97%...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 recommended we get routine ultrasounds until we were 30 and then start getting routine mammograms and MRIs. She recommended we 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?

Since 2016, eight years ago, we have been trying (and mostly failing) at doing our preventative screenings. We initially were recommended to have mammograms and MRIs once a year. Now, it is recommended that you alternate these every 6 months for preventative screenings! If you have yet to have a mammogram or MRI, know both can be 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, and 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 our decision because our mastectomies decreased our risk from up to 97% to 1-2% (WAY lower than even the average person without BRCA+'s risk of getting Breast Cancer) but we know this was 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.

PREPARING FOR OUR SURGERIES…

Once we decided we wanted to go through with our preventative double mastectomies, we had several appointments. We both met with our Surgical Oncologist, who performed 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 didn’t want to risk leaving them and later finding cancer on them, so we went for the "Barbie" look (skin-sparing mastectomy). With this, we don't have to worry about “nipping out” and can wear see-through shirts! Woohoo, what a plus! 

Next, we met 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 had our breast tissue removed and two to four drains put in by our Surgical Oncologist, then our Plastic Surgeon came in and filled the breast area with a deflated balloon-like expander and stitched us back up. After surgery, the plastic surgeon slowly inflates the expanders with a saline solution to fill the space to the size we want for implants. This takes several weeks, and the exchange surgery (where we got our more permanent implants) cannot happen before 3 months post mastectomy in order to have time to heal and the skin to stretch.

We also met with an Occupational Therapist. At this appointment, the OT went over exercises to prepare for surgery, along with stretches and exercises to do after surgery, when our doctors gave us the okay. Stretching and exercise leading up to surgery were important since you have limited mobility in your arms and upper body for a while afterward. Making sure we did our stretches and got moving again was important afterward because, with limited mobility and discomfort, many people get super tight and hunched inward from not moving. We both already struggled with our posture so we DEFINITELY didn't want to look any more like Quasimodo!

The final appointments were bloodwork a few days before surgery, a phone call with the anesthesiologist department, a follow-up with our Oncology team, and pre-op appointments with our Plastic Surgeon to go over our plan of action and sign papers before the big day. We would make decisions on our implants (there are lots of shapes and sizes) after the surgery and once we started to have our expanders filled. Choosing to go the route of reconstruction was a big part of us healing emotionally and feeling like ourselves again. A double mastectomy is not to be confused with a boob job. 

As our surgery approached, we made an effort to go 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. 

Besides appointments and strength training, we gathered supplies for the surgery and recovery. Things like button-up shirts (we won't be able to lift our arms to pull clothing on), seatbelt pillows for the car rides, dry shampoo, body wipes (we weren’t allowed to shower for several days after surgery), sleeping eye masks, etc. We were so lucky to have received electric recliners from the local nonprofit, Pink Chair Project RVA, a beautiful quilt, and a bag of goodies to help us feel loved and supported during our recoveries. You can find all of this on our BRCA+ and Masectomy Must-Haves page. We have also put together a list of our Top Non-alcoholic Wines that we enjoyed during recovery when we needed a “restorative”.

SHOULD YOU GET TESTED FOR BRCA1/2 OR OTHER CANCER-RELATED GENE MUTATIONS?

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.

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. BRCA1 and BRCA2 are only two of several gene mutations that increase your risk of cancer(s), so talk to your doctor about getting a full panel tested. 

If you know your genetic mutation and your family history of 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 feel so lucky to 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 before any cancer diagnosis. So many people are not as fortunate. Eventually, we will focus on other preventative measures for our other cancer risks. Still, for now, we are allowing ourselves to focus on healing from our mastectomies and reconstruction. 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 put together a list of websites and resources that may help you if you're also diagnosed with a cancer-related gene mutation or planning to undergo a mastectomy. 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 diagnosed with a cancer-related gene mutation or going through a mastectomy. They sure helped us! This list includes everything from books to Instagram accounts that helped empower and inform us to make the right decisions for us. 

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

• Sisterhood of Traveling Mastectomy Products - STOMP

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

• @kristinacoccoluto

• @theebooblessbabe

• @forthebreastofus

• @gabbin_thru_brca2

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

• October Never Ends 25 Years Young With Breast Cancer by Brittania Bryant

• Ripped Genes: A Practical Guide to Understanding & Navigating Hereditary Breast Cancer Risk by Jennifer Ervin

• The Complete Guide to Breast Reconstruction by Kathy Steligo

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 - You can request a care package that includes things like a post-surgery bra, robe with drain pockets, shirt with drain pockets, and other goodies.

• https://www.pocketsofhope.com/request-a-hoodie.html You can request a cozy zip hoodie with hand sewn drain pockets in fun fabrics. 

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

RVA LOCAL RESOURCES

• Pink Chair Project - Provides electric recliner chairs for recovery from your mastectomy.

• Pink Ribbon Boutique - A beautiful lingerie boutique specializing in bras for every step of your breast care journey. They have a huge selection of pretty wireless bras, cute clothes, and accessories, along with breast and nipple prostheses. They will work with insurance to get your purchases covered.

• Virginia Breast Cancer Foundation - Provides many resources along with an informational care package for anyone going through a mastectomy.

• VCU High-Risk Breast Cancer Program - Specialized care team for people with an elevated risk of developing breast cancer through their family history or genetics.

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