Preventive Mastectomy: 10 Things You Haven’t Read About But Should Have
Posted February 10, 2016 by Prairie Wife - 18 comments
In the course of making my decision to have a preventive mastectomy to reduce my risk of developing breast cancer, I was shocked at how little I found to prepare me for the decision making process, as well as the surgery and recovery. As a way to offer support to other women (and their friends and families) I am sharing my journey on my blog.
1: Genetic Counseling vs. Genetic Testing
When I informed my doctor last Spring that my mother had breast cancer (in addition to my older sister), she recommended that I go see a Genetic Counselor. For this appointment you have to come prepared with as much knowledge about your family’s medical history as possible. We spent an hour and a half going over everything I knew while she made a chart and asked questions. She also factored in my overall personal health and the fact that I had nursed all 5 Cowkids for a year each (this helped to reduce my risk). Several weeks later she sent me a paper that gave me a bunch of information including my risk factor of developing breast cancer based ONLY on my family history.
My mother and sister both had Genetic Testing. This is when they draw your blood and check for chromosomal abnormities. Some of the abnormalities that can be found have known impacts. For example if you test positive for BRCA your risk of developing breast cancer could be as high as 80%. Some of the mutations they may find still have unknown impacts. It was not recommended that I undergo genetic testing since my mother and sister didn’t test positive for BRCA or any other known genes that would put me at a higher risk for breast cancer.
2. Prepare for a TON of Doctor’s Appointments
Not only will you meet with your doctor and a Genetic Counselor but, if your risk is worryingly high it may be recommended that you see an Oncologist. You can read more about my visit here. If you choose to get a prophylactic mastectomy you will need to then make appointments with a Breast Surgeon (they remove the tissue) and a Plastic Surgeon (they put you back together). You will also most likely need to go for an MRI pre-surgery to make sure that you don’t already have cancer. Plan on each appointment taking at least an hour. Then you also have the pre-op meetings with the Breast Surgeon and Plastic Surgeon…
3. The Decision Making Process is Going to Take a Lot of Time
When this ball started rolling last June I didn’t realize how loooong of a process this would be. To get appointments takes weeks of waiting and to receive results takes even MORE weeks of waiting. To get the results of your genetic testing alone takes 6 weeks! With most oncologists and surgeons you can expect to wait at least a month to get in. Also, you might not like the first doctor you meet with, which will of course result in more time and appointments until you find a good fit. Which leads me to the next piece of advice…
4. Buy a Notebook
When I truly began to realize how serious this all was, I bought a notebook and started to jot down any questions or concerns I had. I also used it to keep track of important names and numbers, appointment times and dates. When I chatted with my friends and family members they often asked good questions that I hadn’t thought to ask…as soon as they left I pulled out my notebook and jotted them down. Before I walked into my appointments I would skim my notes and then throw my notebook in my purse. I have a pretty high level of retention (and the doctors all had handouts for me) so I didn’t jot notes down as we met but, it might be a good idea for some of you!
5. Take Your Partner With You to Your Appointments
Whether it’s your mom, husband, girlfriend or sister…bring someone with you that can offer quiet support. The Cowboy didn’t really say a word during any of these appointments but, knowing that he was right there next to me, and having him there after we left to talk to, was vital to my decision making process. Your partner will be the one taking care of you after your surgeries and it’s important that the doctors and them have a relationship too. After all, they’ll probably be the one calling with questions and concerns for the first few weeks!
6. This Is NOT a Boob Job
Not gonna lie…when I first made this decision I thought it was just going to be a painful boob job. I knew that removing my breast tissue would hurt but I thought this whole process would be take out tissue, put in implants, send me home to recover…WRONG! For the average person getting a prophylactic mastectomy with reconstructive surgery is actually anywhere from 3-5 surgeries (assuming there is no infection or other complications). Below is the process if you choose to get implants rather than use your own body fat (this wasn’t a choice for me) to reconstruct your breasts.
In the first surgery the Breast Surgeon will remove all the breast tissue they can. Breast tissue can be as high up as your collar bone and all the way into your armpits. Then the Plastic Surgeon will place an expander under your pectoral muscle. They will also use cadaver skin (yup that’s right, I will have part of a dead person in me) to act as a sling to hold in the expanders. Remember, all that’s left of your breasts is skin and that’s not strong enough to hold the new weight that will be in there. There will be two drains hanging from your armpits afterwards for 10 days or longer. The recovery is around 6 weeks (I’ll let you know how it goes).
In the second surgery the Plastic Surgeon will replace your expanders (which they have been slowly filling with saline for the last three months) with implants. While a little less invasive then the first surgery, this one will also have a 6 week recovery time.
In the third surgery the Plastic Surgeon will take fat from other areas of your body to try and make your breasts look more natural. Remember there is no breast tissue to help camouflage the implants, so this can really help make your breasts look more like you may be used to.
Surgeries four and five are if you choose to remove your nipples and involve skin grafts and then tattooing to give you a more realistic looking breast.
7. You Don’t Get to Choose Your Final Look
Everyone wants to know what size I’m going to pick. And as I sit here with AA longs after nursing 5 children, I can see why it’s one of the first things people ask. I would only go with a B (what God originally gave me pre Cowkids)…IF I got to pick. Truth is, the Plastic Surgeon will pick what size I end up with, based on what he feels looks best with my body and what he has to work with. This is where trust really comes into play, and I recommend taking a look at before and after pictures of your doctor’s work. The same goes for keeping your nipples. I would like to keep mine but, in the end it’s up to the Breast Surgeon and the Plastic Surgeon. If there are issues with the blood flow or problems when they remove the tissue, keeping them may not be a choice. It’s also an aesthetic thing as well. They may look at where things are after the tissue is removed and feel like I wouldn’t be happy with the end result. I’m going to emphasize yet again, pick doctors that you feel comfortable with and trust!
8. The Cost
The Cowboy and I felt that this surgery was a must for me. I’m 33, my sister was diagnosed with breast cancer at 38, I have five children under the age of 10. Taking my risk of developing breast cancer from 40% to 2% was something we knew I needed to do. We talked about what we would do if insurance wouldn’t cover my prophylactic mastectomy and decided we would find a way to pay for it out of pocket. I figured a regular breast augmentation was around $15,000 so this would be around $30,000. Then the Cowboy asked our Breast Surgeon what the cost was. She knew what we were thinking and assured us that my risk was high enough (and our concerns valid enough) that insurance would cover the surgery. The Cowboy pushed her until she told us an average number of what the cost was. Are you ready for it? Half a million dollars! Yup she said it would be around $500,000 for this procedure. When we heard that, first I thanked God for my husband’s job and insurance and then…my heart broke for all the women out there that don’t have the option to make a choice that could save their lives.
9. Ohhh the Recovery
The best way I found to get a good picture of what my recovery would look like was to first talk to my doctors and second to read over the post-op care instructions. While researching my choice I came across the same statement “recovery will take on average 6 weeks”…which wasn’t really helpful. Did that mean I could start to pick up the baby then, or that I would be able to take care of my family of 7 and workout just like I had before? Turns out it’s a bit of a mixture of the two. For the first week I’ll have the mobility of a T-Rex and it will slowly improve each week. As for picking up LittleMissH…hopefully by week 5 I can hoist up her 25lb sweet chubbiness. The Cowboy will be proving that he truly means to follow through on our marriage vows. I won’t be able to wash my own hair for several weeks or even wipe my own butt (sorry but it needed to be said to prepare you) for the first week. Also, no strenuous activity means NO activity in the bedroom either for that time. Let’s not forget too that this all applies to each surgery in varying degrees.
10. “Prepare” For the Unknown
When I hit the internet after making my decision I was shocked by the lack of information I could find on prophylactic mastectomies. The few articles and blog posts I did find, varied widely from each other. I’ve decided that preparing for this surgery is like giving birth. You can read all the books, have the best doctors in the world, and make your birth plan but, in the end until you’ve been through it you have no idea what it’s going to be like. I’m taking control of what I can (my attitude, my doctors, my plan for taking care of the Cowkids during my recovery) and giving the rest to God.
Feel free to ask me any questions in the comments (or those that have had been through this, please share with me anything you think I should know) and keep stopping back as I share more of my journey with the hope of supporting other women (and their friends and family members) that have made this choice.
Note: We at PrairieWifeInHeels.com are not doctors. As always, check with a medical professionals when making any health decisions.
Read more here Preventive Mastectomy: Telling the Cowkids
Preventive Mastectomy: Pre Op Appointment
Preventive Mastectomy: The First Week
Preventive Mastectomy: Packing Your Hospital Bag and Preparing for Your First Weeks at Home
Copyright: sjenner13 / 123RF Stock Photo
Copyright: wavebreakmediamicro / 123RF Stock Photo
Categories: Mastectomy Surgery, Preventive Mastectomy, Support
Tags: , breast cancer, breast cancer prevention, cancer support, genetic testing, mastectomy, prophylactic mastectomy, support, tips and tricks
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18 thoughts on "Preventive Mastectomy: 10 Things You Haven’t Read About But Should Have"
Thank you for sharing your journey and for helping to share information about prophylactic mastectomies! This information is invaluable.
Thanks for stopping by Shannon, I hope my story can help give others strength and the information they need to make the best choice for their health.
Let me just say that you are one freaking awesome woman! This is a major thing and you are selflessly doing this to provide more time to love and care for your family. I have always had major respect for you but this just raises the bar!! Know that we are praying for you already for all that is ahead and will keep praying until this whole process is complete. We are here to help however we can! Love you guys!
Thanks mama, that means SO much 🙂
I am going through this process, starting in April. My risk is also about 40%. Perhaps you are a member of the Facebook group Prophylactic Mastectomy? If not I recommend it, although complications are over-represented there since people are more likely to post if they have an issue, But, it helps to see pics and the amazing results that are possible.
Sounds like your story is similar to mine (I too start my process in April). I’ll have to check out that FB page thanks for the info (and the heads up).I hope you keep stopping by and sharing your journey 🙂
Omgoodness! To so many things here! $500000! Wipe your own butt!
Right…it’s been a learning experience for sure!
Great list! My best tip is to connect with other women who are high risk and have already had the surgeries. They’ll understand you on a level that no one else will. They’ll get all your feelings and will remind you of the relief you’ll feel once you’re surgery is over and your risk is so greatly reduced. Plus, no question is crazy or off-limits between us BRCA sisters!
I also wanted to share with you the link to one of my blog posts with an extensive pre-op prep list. It’s got items that helped make my recoveries smoother, the reason they help, and where you can get things. Thought it might be handy as you fear up for your surgery. Xox, Robyn https://thanksforthemammarys.wordpress.com/2015/06/14/pre-op-list/
So true, I would encourage women to check out some of the online support groups (there is a great one on FB)! And thanks…I’m off to check out your list right now!
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What a great and truthful list! Thank you so much for sharing! It seems everyone has different recovery times, though. I was back to teaching after 4 1/2 weeks, but should have went back half days. My exchange recovery was about 2-3 weeks, though I was back at work 1 week after. Some gals said only 3-5 days after exchange and they were back to work, bit i suppose it mighr depend on occupations too. Again, everyone is slightly different.
Thanks again for taking the time to write this for the benefit of others.
Leann thanks for stopping by. I agree the time line is different for everyone and having been a teacher I agree that it’s a bit more strenuous than a desk job!
Thank you for sharing your story. My great grandmother, grandmother and mother all have had breast cancer. I also went for genetic testing and the BRAC came back negative but based on family history i have a 1 in 3 chance of getting it. Im 33 years old and have an appointment on Friday with the plastic surgeon to discuss removing both beasts. This is something that has been weighing on my mind and lose sleep over, i know its the right thing to do. Your blog has helped alot.
There are so many decisions to make, and a lot of unknowns. Glad that this was a place where you could find answers to some of your questions.
Thank you so much for your story. It really helped put things in line for me. I’m choosing a prophylactic mastectomy and I am 68 years old with a positive BRCA 2. I’m not having implants and one doctor hardly even spoke to me about the entire procedure he explained it in about a minute and a half took pictures and left the room. He has a very good reputation and I’m afraid I might be passing up a good doctor because of my consultation with him. I’m going to a second doctor today and hopefully this consultation will be more informative. Thank you again for sharing your experience was very helpful.
I say trust your gut, feeling comfortable talking to your doctor is key. Chances are you will have questions and concerns later on and if you don’t feel like you can call and ask the result could be terrible! So happy this was helpful, here if you need anything at all.