My Mastectomy.
My Mastectomy.
I had my double mastectomy on October 3rd.
Below, I’m sharing my experience for anyone facing this surgery and tips and tricks for what worked for me.
Each of our diagnoses and journeys are different. Here is mine:
I was diagnosed with stage 1 triple positive breast cancer on April 17th, 2024. Triple positive means both hormone positive (estrogen and progesterone) and HER2 positive. *I switched oncologists after active treatment and when they re-ran my tumor pathology using more specific testing my tumors were found to be so low on the HER2 scale that they treated me as negative HER2. So initially triple positive but now considered just hormone positive. But my tumor grade was high (3/3) and I was young at diagnosis (37) so chemotherapy was necessary.
I had chemo first, which started on May 7th and I completed 6 rounds of TCHP every 21 days (Taxol, Carboplatin, Herceptin/Perjeta given as the Phesgo shot). I finished chemotherapy on August 20th and my double mastectomy surgery was scheduled about 6 weeks later October 3rd.
Originally my cancer diagnosis involved one single tumor that I felt myself (you can read more about that here). But once a second tumor was found with questionable cells connecting the two, it was more likely that a lumpectomy was out of the question and at least a single mastectomy would be needed. I chose a double mastectomy. I had fibroadenomas and some other cysts in my right (non-cancerous) breast and would have had a lot of regular monitoring for that side and decided I’d rather have surgery and remove that tissue also. Imagining mammograms and ultrasounds and possibly MRIs every few months brought up a lot of anxiety and fear and by removing the tissue I would avoid that kind of testing. I was also told I’d be able to avoid radiation if I did the double mastectomy and I was hoping not to do that.
It’s a personal choice that I made (and sometimes medically there is not a choice between lumpectomy and mastectomy) and a choice each woman needs to make for herself.
A Mastectomy changes your body forever.
Even if you are able to preserve your skin and your nipples, you’ll never have exactly the same anatomy and feeling again. This is something that I mourned and processed before surgery.
I was able to joke with friends that I’d have ‘perkier’ breasts and made peace with my decision but generally a mastectomy is a very sad and difficult process of losing a part of your body to cancer. If I can give advice around how to speak to any woman facing this choice, I’d say to be very considerate, recognize that it’s sad and hard and not make jokes or comparisons to ‘getting your boobs done’ (unless she is expressing a lighthearted attitude around it). Because a mastectomy involves removing all the breast tissue, even with implants placed there is not the typical “cushion” around them and women can have rippling, gaps and other issues that make their breasts look unnatural. There are many wonderful surgical techniques to help, but this surgery is not a simple augmentation, and the results are often not going to look the same as one.
It also can be a perfectly ‘safe’ choice to have a lumpectomy or single mastectomy and doesn’t necessarily increase your risk of cancer returning if you don’t remove all the tissue in both breasts.
So again, comments like ‘I’d just do both’ are not helpful when a woman has made her choice not to pursue a mastectomy. It’s a heavy decision and one that is made with your doctors and a woman’s best interest in mind.
In the chemotherapy process you typically don’t start discussing surgical options until at least about halfway through. Once it was time to find my surgeons, I set up two consultations. The breast surgeon I worked with originally who performed my biopsies in Nashville was wonderful and would have been ideal to do my mastectomy, and I would need a plastic surgeon to do my reconstruction. I met with a very highly recommended plastic surgeon locally and really liked her. She recommended expanders at the time of mastectomy which would be placed and filled slowly over 3 months then swapped for implants in a second surgery.
A few weeks after my diagnosis an ‘Instagram friend’ reached out to me in a DM to share her surgery experience with Dr. Anne Peled and Dr. Ziv Peled.
I am so glad that she did! Women in the ‘breast cancer club’ have been so kind and generous in sharing resources and their experiences with me. She raved about their sensation preserving technique and direct to implant options and recommended them to me. The Peled team is based in San Francisco and that was a viable option for me to travel for surgery and recover at my parents/my childhood home just south of SF. I had a wonderful consultation with them over zoom, and I ultimately chose this team for a few reasons:
Sensation Preservation:
A mastectomy often leaves you entirely numb across your chest. Some women do regain some sensation but it’s hard to know if you will or how long it will take. Dr. Ziv Peled is a nerve plastic surgeon and works alongside his wife to specifically separate the nerves from the tissue and preserve or graft as much as is oncologic-ally safe. They have performed hundreds of these surgeries over the past few years and are seeing very promising results with a range of sensation coming back within 6-24 months post-surgery. This portion of the operation is not covered by insurance and cost $6500 (we did file with my insurance and received $2900 back!).
One surgery:
The Peled team felt that I was a great candidate for a single surgery. This meant I could do my mastectomy and reconstruction (direct to implant) in one 2.5-hour surgery. Dr. Anne Peled is also a breast AND plastic surgeon so she would do all the mastectomy and the reconstruction which is rare. I’d be able to save my skin and nipples and would not have to wait months to have my reconstruction with implants. Not everyone is a perfect candidate for this. I chose to go down about a cup size (from a D after nursing two babies, to a small C) which left plenty of skin for the implants and my cancer was not attached to or too close to my nipples. One surgery felt less overwhelming than two. *It is possible that if I’m unhappy with the way my implants look I could need some fat grafting later which requires liposuction from one part of your body and fat injected into areas that need more ‘fill’ so a second surgery is always possible.
Location:
Although traveling for surgery sounds complicated, the Peled team has many patients who travel to them for surgery. Most of their patients have their drains out by day 8 and can stay locally in a hotel to recover. I had the bonus of my parents living close by to help me with recovery. Although it was hard to leave my kids for 10 days, it was a gift to recover and not have the added stressors of being a mom and dealing with the construction at our home. My husband came out there with me for surgery and we stayed at a hotel the night before, then drove to my parent’s house. I stayed for a week while my husband flew home and then he brought our kids out for another week during their Fall break, so I had 2 full weeks of rest before traveling home.
Insurance coverage:
Although I did not expect our insurance to cover an out of state surgery, it did! This was a pleasant surprise. We have Aetna insurance and Dr. Peled’s team was wonderful about helping get everything submitted and approved.
And the final reason that really stuck out to me is that Dr. Anne Peled is a breast cancer survivor.
Her personal experience with cancer and facing treatment and surgical decisions makes her able to relate to her patients’ journeys. Her parents are also oncologists and she and her husband are incredibly well researched and respected in their field, so I felt very safe and comfortable choosing them as my surgical team.
Between Chemotherapy and Surgery.
I spent a few weeks resting and recovering from chemo and did some research to purchase all the items I might need for my mastectomy recovery. I really tried not to get ahead of myself or spend too much time worrying about surgery. Once I had scheduled surgery with my team and knew the time was coming, I focused on taking care of myself. I tried to eat well, had regular acupuncture, coffee with friends, took lots of walks and got a massage.
We had arranged childcare for our girls and prepared as a family for my surgery and for me being gone for so long. I answered lots of bedtime questions and used a stuffed animal to show my daughter how the surgeon would be making a small cut, taking out the “bad stuffing” and putting in some “good stuffing”. There were some tears the day before I left and some anxiousness, but we made sure to talk to my daughters’ teachers and friends’ parents so everyone knew they may need a little extra love during that time. My mom came to town to spend some time with my girls, and they were lucky enough to have her and my husband’s parents at grandparents’ day at their school that week which was a great distraction.
My husband and I left for California on October 1st so that we’d be in town and ready for my pre-op appointments on the 2nd.
We spent one night at my parents’ home and then left for San Francisco the next day. There are a few hotels that are very convenient to the surgery center and the Peled’s offices. We stayed at a Courtyard Marriott on Van Ness which is right across the street from the building where I’d need my nuclear medicine appointment the afternoon before surgery.
First, I had an appointment at Dr. Ziv Peled’s office to do some initial breast sensation testing to have a baseline to compare to later in my recovery. The testing was very simple and quick, and we headed to my next appointment. I was extremely nervous about the dye injection and had heard it could be uncomfortable but in my experience, it was very fast and felt like a tiny pinch. This injection is done directly in/near your tumor site using a dye that can be traced in surgery to find which lymph nodes are considered “sentinel lymph nodes” which would be the first nodes where your tumor would drain to. They then only need to remove or biopsy those specific nodes (I had no idea we have between 20-30+ lymph nodes in our underarm area). I ended up having three lymph nodes removed in surgery.
Once these appointments were done my husband and I found a cute restaurant to have a light meal before my early surgery wake up. We talked about any nerves I had about the next day, what a crazy journey it had been through chemo, and about some of our plans and dreams for the future beyond cancer and surgery.
I would highly recommend if possible, spending some time the night before surgery doing something pleasant or relaxing, going out to dinner or being with friends.
I really felt like I was in a positive headspace and able to have some pleasant memories around a time that was obviously very difficult. After going through chemotherapy, I had heard so many women say that mastectomy surgery was “not that bad” in comparison. Knowing it would be just one day of going under anestethia, that my cancer would be removed from my body, and that recovery would get better each day helped me to stay calm and positive.
We set our alarms for 5am and arrived at the surgery center at 6am. We had a short wait and then I was taken back to change and get my IV started. I had a great team take care of me and they made the process very calm and easy. I used to be a huge wimp about IVs but after having a chemo port I seem to have gotten much braver about needles. After I was ready to go and gave my husband a hug, I teared up a bit knowing that this was a big moment that would always feel like a “before”.
There are a few distinct moments in a cancer journey that stand out as the times you’ll always remember.
The moments before your doctor calls to tell you yes, it’s cancer. The moment you sit in the chemo chair for the first time and force yourself to stay calm while the medicine is pushed into your body even though you are so afraid of it. The moment you take a deep breath before buzzing your head and letting your hair fall to the ground around your feet.
The night before my mastectomy I was so aware of what I took for granted in the last shower I took with my body just as it was. With my breasts exactly as they were meant to grow on my body, as a part of me. The breasts that made me feel feminine and attractive and fed my babies for two years and that I never thought I’d have to lose or surgically recreate. Especially at 38.
I’m incredibly thankful for the medicine and the surgeons and the long way we have come in helping women reconstruct their breasts after a mastectomy, but still, it’s a very hard moment to face. It’s another time when you are not in control of what is going to happen to your body because cancer took that choice away from you.
Writing all of this out has been a therapeutic process for me and reading it back months later is a reminder of my strength and what my body went through. I would recommend journaling through these moments because it can be helpful to read later and to remind yourself how far you’ve come.
I regularly share my outfits, bargain finds and investments on my Instagram. Follow along here if you’d like to see more! And never hesitate to DM me with a question or if you’re on the hunt for something, the only thing I love more than shopping for myself is shopping for someone else!
+My latest finds here.
+My experience post-surgery.
+Six things I wish I knew before starting chemo.
