Quick Tips + Resources
My Status: BRCA 2+, no cancer
Breast size: Large A
Age: 35 (time of procedure)
Procedure: Prophylactic double mastectomy, nipple sparing with Surgical da Vinci Single Port Robotic Surgical System. Breast reconstruction with tissue expanders (filled to 300 cc’s of saline) and implants to follow approximately 2.5 months post-op.
Hospital: UT Southwestern; Dallas, Texas
Surgery Date: 2/1/2020
Surgery Duration: 5-6 hours
Hospital Stay: 1 night
Procedure(s): Breast reconstruction with exchange of tissue expanders, previously filled with 420 cc’s of saline, to silicone breast implants at approximately 450 cc's. Fat grafting on breasts through liposuction of abdomen.
Doctors: Dr. Haddock (plastic surgeon)
Hospital: UT Southwestern; Dallas, Texas
Surgery Date: 5/14/2020
Surgery Duration: 2 hours
Hospital Stay: n/a; outpatient
Resources for Research (pre/post surgery)
I spent quite a bit of time on forums and researching other women's experiences. It was so extremely helpful. For me, the more I knew, the more I felt in control of my destiny. Below are a few links to some sources that I used and context:
Facing Our Risk of Cancer Empowered or FORCE: This was my primary resource and it's fantastic. This particular organization focuses on hereditary cancer. There are so many resources available and they can help you get started if you don't even know where to begin. They offer information on what to expect with a mastectomy. There are pictures available of results (where I will also add my photos). They offer Peer Navigators, matching you to a person that has a similar situation to your own so you can talk through expectations. One of the best resources for me was their online forum. And so many more things to help you get adjusted. I'll include some links below:
FORCE Forum - you need to create an account through FORCE to access.
XRAY Program - Examining the relevance of articles for you. This program looks behind the headlines of cancer news to help you understand what the research means for you.
Recommend joining their enewsletter to stay up to date with latest hereditary cancer news. This form can be found at the bottom of nearly every page of the website.
BLOGS: Just like I hope this becomes, I found a few people that were helpful in my own surgery preparation. Here are their links:
What to pack for the Hospital
1 set Pajamas (button down top) and pants. You probably won’t change into these until the next day. I left my hospital gown on until the next morning because I didn’t feel like moving much.
Robe. Same as pajamas, not really needed until the next day but it was nice to have to get up and walk around the hospital the next day and get out of the room.
Washcloth/face wipes. I personally used face wipes but some people may prefer a washcloth… if so, you may want to pack your own soap?
protein bars (this was recommended to me pre/post surgery to assist in healing)
Vitamin water/electrolytes (also recommended to me for healing)
Anything else your support team may also like. You never know where vending machines may be. I didn’t feel like eating too much and ate the hospital food fine but glad I had some snacks on hand.
Water bottle with long straw (I got one of these during pregnancies at the hospital that I brought; if not, just bring straws. Much easier to drink this way).
Body pillow. I didn’t need it, but my husband ended up using it to help with his own comfort on those crazy couch beds.
Cozy blanket from home. You may want one for you and one for your possible significant other? I preferred my blanket over the hospital’s.
Travel pillow. I also didn’t use it, but you never know. Could be of help to your support team too?
Family picture and cards received thus far. I brought these to put up in my room to help with moral support.
Items for Recovery
Mastectomy-marketed attire: We purchased various shirts that had pockets built in, but I didn't find it necessary (and they were really expensive). I used the Velcro belt throughout my entire recovery. It kept everything closer and more put together so you could wear most clothes over it (see drains section).
Velcro drain belt: make sure the hospital gives you two of these, so you can shower with one and change to the dry/clean one afterwards.
Multiple pairs of button down pajamas with all types of combos: short and long-sleeved, pants and shorts. You will prefer to be in pajamas the majority of the first week.
Larger than usual button down shirts. The bulk and length helped to hide the bulk from the drain belt.
Large sweaters. I was able to get my arms into a really large sweater after the first few days. This actually hid things the best. Again, this is dependent on region and time of year. My surgery was in February.
I was able to shower after the first 48 hours and did so! You will likely have wateproof tape/bandages on all your incisions. I needed help showering (my back and hair) for almost the first week. It was helpful to have dry shampoo and I used this a lot. It’s also handy to have face wipes and chapstick.
Nutrition: Per my doctor's recommendations, increase protein intake as well as electrolytes. I purchased protein bars and Gatorade and ate/drank these a week prior to surgery and a few weeks after. This is supposed to be helpful for healing and recovery.
Compression garments: I purchased a total of 3 to help with keeping one clean at all times.
Scar treatment. My surgeon's office recommended NewGel scar gel strips. I also use the gel when I'm not wearing the strips.
What to expect from drains
What to expect:
The drains come out from the sides of your torso and are stitched into your sides. The first week they are also covered with massive amounts of waterproof tape. From there, there’s about 2’ of tubing with a bulb attached at the end. The bulb collects your excess fluid and needs to be emptied and measured daily. You essentially just pop the top of the bulb and pour into a measuring cup, then record the results daily. This may be gruesome, but you can also see the drains snaking up into your body and in your chest a bit.
How to wear:
The hospital should provide you with a velcro belt that’s worn around the waist. The belt has velcro loops that attach to the bulbs of the drains (also via velcro). There are many ways you can wear the drains; this was what worked best for me, just using the belt. I found this to be the best solution to hide under clothing. I’d read people purchased special clothing (which I did and returned) to hide drains in interior pockets or in pants pockets, but the belt was fine and really just easier once everything is attached. They also give a lanyard to attach your drains to while showering; I personally felt it easier to just leave the belt on. We had even purchased a special lanyard that came with drain holders (like can koozies) and that wasn’t helpful at all because the bulbs didn’t even fit in them (returned this as well.) Make sure you get 2 belts, so you can switch to another dry one, after showering.
Length to wear:
Everyone is different. I had 2 in for a week and 2 days and the other 2 in for 3 weeks and 2 days.
How to talk to your children
My kids are quite young, 4 and 2. So it was important to be high-level but informative. I wanted them to know and understand that I was having surgery, but that I wasn't sick and everything was going to be OK. I was doing this so that I could be healthier for our family. I tried to keep the message simple and will give them more information as they are older and able to digest.
I didn't want them confused as to why I would be in bed for I didn't know how long. Or be upset if I wasn't able to play with them as usual. My 4 year old, Cora, seemed to somewhat understand. My 2 year old did not, ha! A good intro to the topic and guide to the discussion was reading a book I had seen recommended called Mom's Genes. I ordered it through Amazon and began reading to the girls about a month before surgery. I have an email address for both girls and write emails to them from time-time, for when they are older. I wrote them an email a few weeks before the surgery to help explain things in more detail, in order to document for both informative purposes and to emotionally capture the moment. I think they'll appreciate this archive when they are older.
Cora was never afraid and was actually quite empathetic. My 2 year old, Monroe, didn't understand why I couldn't hold her for quite some time. She finally started saying mommy has a boo-boo and seemed to realize I could not hold her. It was both heart-breaking and so sweet at the same time. Both girls adjusted - and now, I'm recovered and it was all just a blip on our radar!
A great book to help start the conversation with your children.