Since you are here, I’m guessing that breast cancer has touched your life in some way.
I was diagnosed with breast cancer at age 36, just a few months after having my second baby. Talk about a whirlwind of a year! My family and I experienced the highest of highs and the lowest of lows all in a short span of time.
The first few weeks after the initial diagnosis are such a difficult time. You are essentially in a daze, yet expected to make so many life changing decisions.
In this post, I will share what you can expect from a mastectomy with reconstruction surgery. I will also give tips on ways to make the recovery process easier for you.
- What is a double mastectomy?
- Preparing for Surgery
- Bilateral Mastectomy with Reconstruction
- Recovery Must Haves
- Life after a Mastectomy
(Some of the links in my posts are affiliate links. If you make a purchase through one of these links, I may receive a small compensation at no extra cost to you. As an Amazon affiliate, I earn from qualifying purchases.)
What is a double mastectomy?
Since I am not a doctor, I am going to define what a double mastecomy is using the simple terms my breast surgeon used.
A double mastecomy is a surgical procedure where the doctor removes all the breast tissue from both breasts. Your doctor will send the tumor(s) and lymph nodes taken to a lab for testing.
Shortly after your surgery, you will receive a pathology report that details the important characteristics of the tumor(s). These characteristics include size, aggressiveness, hormone receptors, and much more.
The American Cancer Society website has information on the different types of mastectomies if you are interested in reading more about them.
Preparing for a Surgery
My surgeon initially suggested “just” having a lumpectomy to remove the tumor in my left breast. However, after an MRI showed some questionable spots around the main tumor, he apologetically informed me that he wanted to take the whole left breast.
I was completely fine with this. I had already made up my mind that I wanted both of my breasts gone…like ASAP.
Should I have a single or a double mastecomy?
Immediatly after being diagnosed with breast cancer, I felt like my boobs had deceived me and were trying to kill me. I just wanted them BOTH off. Maybe that was a bit melodramatic of me, but it’s how I felt.
So, I told my surgeon that I preferred to have both breasts removed rather than just the left one. My doctor agreed to the double mastectomy after I assured him I had given it a lot of thought. He wanted to make sure I did not have any regrets after surgery.
Is it major surgery or outpatient?
Besides having my wisdom teeth removed when I was younger, this double mastectomy surgery was my first major one. My doctors informed me that I would be in the hospital for 1-2 days following the procedure, so it definitely wasn’t outpatient.
More than anything, I was scared of going under anesthesia. I wasn’t sad about losing my breasts at all. I’m not sure if that’s normal or if I was just so mad at them I wanted them chopped off. I knew the recovery was going to stink, but I was so ready to get this cancer out that I didn’t care.
Bilateral Mastectomy with Reconstruction
The next week was a blur of doctors’ appointments leading up to my surgery. I also met with a plastic surgeon to discuss my options for future breasts. My plastic surgeon has a really blunt personality where he just kind of tells me what’s going to happen.
I felt like I had people pulling at me in all directions and asking me to make monumental decisions…all while I still hadn’t even processed that this was now my life. It was nice having a doctor just spell out the plan for me.
The plan for my new boobs was as follows:
- The surgeon would remove all of the tissue and nipples from both breasts.
- The plastic surgeon would then come in and place a tissue expander in each breast.
- Then the plastic surgeon would add saline to these tissue expanders each week to inflate them little by little.
The tissue expanders are there to serve as spacers where they stretch out the skin to make room for the implants you will eventually have.
Essentially they are like having balloons for boobs, and your plastic surgeon blows them up a little each week. Only these balloons are hard and terribly uncomfortable.
But at least they don’t have cancer in them!
Lymph Node Removal
My husband went with me to the hospital and we hung out in a pre-operating room for a while.
Several nurses came in at different times, and all of them commented on my age. I was also asked a lot if breast cancer ran in my family.
Nope. Just a random case of breast cancer.
Before my surgery, I had to go in a separate room to have dye injected into my breast so that my surgeon could see my lymph node draining system more clearly.
This didn’t last long; but, I’m not going to lie, it hurt pretty bad. My surgeon was going to remove four lymph nodes with my breasts to test them for cancer.
He kept reassuring me that he didn’t think the cancer was in my nodes though. All of my scans had been clear too.
Is it painful?
I obviously don’t remember any of the actual surgery. My earliest memory is waking up in a hospital room with my husband nearby.
My husband had to help me adjust from any position in the bed because I couldn’t do it on my own. I also had trouble extending my arms to reach for things.
I was in and out of sleep all night since nurses came in regularly to check my vitals and give pain medicine.
Once I was up, I didn’t feel so bad. It was the going from a reclined position to standing that didn’t feel great.
A nurse taught me a great tip, which was to hug a pillow to your chest as you are standing up. It makes it much easier!
My breasts were uncomfortable too, but I think it was partly due to the band the doctors had wrapped around them. The bandeau had ridges and wasn’t really a soft material, so it really dug into my skin.
And then there were the drains. I had four drains total (2 on each side). They grossed me out to look at them, and they were a pain in the butt to deal with.
I had to empty them every few hours, but I was able to do this on my own. A lot of people recommend aprons and things to hold the drains. I didn’t buy one of those though.
Instead, the nurses pinned (with safety pins) each drain to my clothes. It actually worked really well and I saved money on an apron!
Recovery Must Haves
The day after surgery, my doctors cleared me to leave the hospital. As my husband went to get the car, a nurse wheeled me out in a wheelchair. Along the way, she told me about her daughter who was diagnosed with breast cancer at age 17. Can you imagine!?
I felt guilty for thinking I was young with cancer. The nurse said her daughter was now in her 30’s and doing great. I was so glad she shared that with me!
Clothing and Pajamas
Since you don’t really have full movement of your arms after a mastectomy, I read that shirts and pajamas that button are best.
I bought two sets of pajamas that button up the front to wear post surgery.
This is the pajama set I bought. (Amazon Affiliate Link)
The material of these pajamas is really soft even on sensitive skin, and they are roomy enough to feel comfortable in.
My mom and my aunt both came to stay at my house while I had surgery. I was so thankful for this!! My two little girls love my mom and don’t miss me at all when she’s around.
My aunt was a huge help too. She took care of the kids, ran errands, cleaned my house, and just kept my mom together since this is obviously an emotional journey for everyone involved.
If you have family members or friends who are willing and able to help, I highly suggest letting them.
It was really hard going through all of this with a five year old and a six month old because they are both so needy. In hindsight, though, they kept us busy. I didn’t have a lot of time to pity myself because someone was always needing something.
Also, I know neither of them will remember this year of our lives, and I’m thankful for that.
Double Mastectomy Pillow
Once I got home, I mostly reclined on our couch. I remember certain things caused pain, including laughing, coughing, sneezing, and getting up.
While sitting or laying, you will probably find it more comfortable to have big feather pillows under each arm. I had a mastectomy pillow, but for some reason I preferred regular pillows.
You may also need pillows behind you to support your back.
The first few days, I had terrible muscle spasms in my back. For some reason I was afraid to take the muscle relaxer my surgeon had prescribed. I think I was scared of mixing it with my pain relievers. Once I started taking the muscle relaxer, I felt sooo much better though. So make sure you take what they give you!
I ordered a wedge pillow before my surgery, and I used it a lot for the first couple of weeks.
Rather than sleeping in a recliner in a room by myself, I really wanted to sleep in my own bed. This wedge pillow allowed me to sleep at an incline, and it was MUCH easier getting up this way.
You can see the wedge pillow I bought. (Amazon Affiliate Link)
Before my mastectomy, I read about different tasks that would be difficult post surgery. One of them was opening medicine bottles.
This was sooo true! I’m almost a year out of surgery and I still have trouble twisting caps on some things!
Life after a Mastectomy
A few days after my surgery, my surgeon called with the results of the pathology report. My tumor was estrogen and progesterone positive and HER2 negative. It was a Grade 3 aggressive tumor. All of that information had been in my original biopsy.
The new, unexpected news was that the cancer was in two of the four lymph nodes they had taken. This was devastating news of course because none of my scans had shown the cancer in my lymph nodes.
My plastic surgeon had told me prior to surgery to brace myself to hear it was in my lymph nodes….just in case. So, I wasn’t completely caught off guard by the news, but it still really, really hurt.
I was terrified that it had spread even further. And I knew this meant chemo wasn’t going to be easy.
My surgeon also recommended that I see a radiation oncologist because there was a chance I would now need radiation therapy.
My doctors were concerned that the cancer may be in the lymph nodes inside my chest. Because of this and my young age, I was told that I would benefit from radiation therapy.
You can read about my experience with 6 weeks of radiation treatment here!
I saw my plastic surgeon the week after surgery. He was able to remove ALL of my drains. It hurt so bad when the nurse pulled them out, but it was fast and so freeing!!
My drains left four small scars on my sides, but they aren’t even noticeable almost a year later.
I also have a long vertical scar on each breast from the bilateral mastectomy. This scar is really prominent to me, but every doctor or nurse who sees them tells me they barely notice them.
Since my pathology report showed that the tumor was hormone receptor positive, my doctor prescribed Tamoxifen.
I did not start this chemotherapy drug until after I had completed all of my other treatments, including radiation.
I now take Tamoxifen once a day to keep the estrogen levels in my body low.
I don’t mind my scars at all. And I still don’t miss my old boobs. I’m just so thankful that my current ones don’t have cancer in them!
If you have had or are planning to have a mastectomy, I would love to hear from you! What do you have anxiety about and what are you thankful for?
Do you have any double mastectomy recovery tips?
Please share by commenting below!
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