Hey all,
Just a quick warning - this email will go into detail about breast surgery and all that goes with it. I’ll talk about what breasts mean to me, and my emotional and mental journey as I have considered losing them.
If boob talk might make you uncomfortable, feel free to skip this one!
If I got to write a book about the journey that is cancer, it would be called “Nobody Tells You Anything”. My journey has felt like a full time job because most of the choices I made were the result of extensive research on my part, not anything that a doctor offered up to me.
Nowhere is that more true than in the case of my surgery options.
Here is a quick primer on the basic options for breast cancer surgery:
- Lumpectomy - this involves removing the tumor and a margin of tissue around it, and sometimes also removing some lymph nodes.
- Mastectomy - this means removing all breast tissue, and sometimes the nipple and skin as well.
- Flat closure - this is one option for mastectomy patients, which leaves the chest flat, sometimes with a nipple, sometimes not.
- Implant reconstruction - this means reconstructing the breast using silicone or saline implants after mastectomy, and there are a variety of ways to do this.
- Tissue based (or autologous) reconstruction - this means taking skin, fat, blood vessels and other tissue from another part of the body and using it to reconstruct the breast after mastectomy.
- Fat grafting - this is often part of a revision process after reconstruction where fat from another part of the body is moved to the reconstructed breast to improve the shape.
- Nerve or sensation sparing - this involves cutting and reconnecting nerves to attempt to preserve some amount of sensation in the nipple or breast. Sometimes using the patient’s own nerves, sometimes grafting a cadaver nerve.
Note: Nobody told me most of that!
What they did tell me
My very first doctor’s appointment after my diagnosis was with a breast surgeon. That is where most breast cancer patients start. I checked out three local surgeons and chose the one I liked the best. They all said the same thing in my initial appointment though. I would start with chemo (they all said TCHP), then have surgery, then radiation. They gave me my surgical options and basically said I could choose a single or double mastectomy, with flat closure (no reconstruction) or implant reconstruction.
They said because of the size of my breast, and number and location of tumors, I wouldn’t be a candidate for lumpectomy. Also because I am on the thinner side, they said I wouldn’t be a candidate for tissue reconstruction (which they didn’t give me any information about since they said I wasn’t a candidate).
I was very upset by this idea because I know enough about breast implant illness to know that I wouldn’t be comfortable putting implants in my body, and the thought of going completely flat was something I couldn’t even process.
But luckily for me, my journey started with 5 months of chemo, so I had a lot of time to research and think.
Many, many breast cancer patients start with surgery! This means that they are making this life changing decision in a matter of weeks, while they are still in shock from the diagnosis itself. It’s a terrible experience and I’m very grateful I had more time.
My emotional process
During my chemo treatments I initially thought I might not have surgery at all. I know several people who took that route and having no surgical options I was comfortable with, I thought I might have to do that as well. I knew this would mean more work in other ways to fight the cancer, and I never felt confident that I could beat it without the surgery, but I also felt trapped by my lack of options.
Once the end of my chemo started getting closer I revisited the idea of surgery. I did a lot of research on the benefits, the risks of not doing it, and I talked to all of my doctors. I was surprised to find that even my most “woo-woo” Naturopathic doctors were pro-surgery. They reminded me of the idea of a tumor microenvironment and it really convinced me that removing the tissue would be highly beneficial in my healing journey.
What my breasts mean to me
At this point I had to face the idea of losing my right breast or both breasts. To be honest, I’ve never really thought much about my breasts, except to worry they are too small, and not the right shape. (Let’s save the conversation about internalized patriarchy for a later email. 😒)
However, being faced with losing them I suddenly loved my breasts! They are a very important part of me! My breasts fed my baby for 18 months and did a great job. The intimacy that comes from nursing your child is such a gift and I’m so grateful to my breasts for what they did. They are also a huge part of my sensuality and sexuality. Did you know that most reconstructed breasts are mostly or all numb? (No one told me that either)
People talk about not being able to feel hugs, or when their children climb into their laps and lean on their chests. Even the feeling of a good bra, or taking off your bra at the end of the day!
The thought of losing most or all feeling in my breasts was really hard to fathom.
And finally my breasts are just a part of me, like my hands, feet, nose, or anything else. Imperfect though they may be, they are me. Having to process amputating them was incredibly hard.
So down the rabbit hole I went
I had a really frank conversation with my favorite integrative oncologist, Dr. Devlin. It involved a lot of tears and me admitting that I just don’t want to amputate such a significant part of my body. One of the reasons I love him so much is that he really listens, and doesn’t try to sell me on anything. He suggested I contact some other doctors that specialize in autologous reconstruction, to make 100% sure it wasn’t an option for me.
So I did my usual Elizabeth thing and dug into the deepest recesses of the internet to see what other options might exist for me.
I found things like goldilocks closure, which involves creating a smaller breast mound from remaining skin and fat in the breast area and makes it easier to wear bras and shirts. This works best on people with larger breasts.
I found so many options for autologous reconstruction. Each option is called a flap. The flap is the section of tissue they use to reconstruct the breast. They can use tissue from the lower abdomen, lower back (love handle), upper butt/hip, inner thigh, latissimus area (back of armpit), and probably more that I'm not aware of. It's kind of wild what they can do honestly!
I also found several doctors that specialize in this and talk about working on "thinner" patients. I felt like it was at least worth a shot.
I ended up interviewing 6 different plastic surgeons or centers and getting opinions from several of them on what I could and should do as far as reconstruction. You know what's great? They all recommended a different 'flap'. 🙄 I found that so annoying because they each had their solid reasons for it, but in the end I had to just decide who I trusted the most and which reasons I liked the best. For such a heavy decision, that felt like a lot!
My final decision
I ended up choosing to do a single skin-and-nipple-sparing mastectomy, with nerve preservation, and immediate PAP flap reconstruction. (Say that 5 times fast)
I decided to leave my left breast alone for now, and will see how stressful I find that over time. If I chose a bilateral mastectomy it would just be preventative on the left side and no guarantee of not getting cancer again, so it didn't feel worth it to me. But if it weighs on me I will consider it in the future.
I chose Dr. Dhivya Srinivasa as my plastic surgeon, and Dr. Heather King as my oncological surgeon. They work together as a team. Dr. King is great at nerve preservation if it's at all possible, and Dr. Srinivasa is a talented microsurgeon who gets fantastic aesthetic and functional results.
The surgery will be in Austin and I have to stay there for several weeks after to recover before traveling home, but I think it will be worth it.
In the end it came down to gut feeling. I trust Dr. Srinivasa and felt the most at home with her when we met. She's also a bit vain and very feminine and I liked that for this situation! 💅 She steered me away from an SGAP flap (upper butt/hip) because it leaves you with a flatter butt, and she was like, "what woman today wants a flat butt?" I think she just gets it and sees the whole body and gets you the best result given your situation.
Choices I made and things I learned at this stage |
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1) I pursued surgeons outside of my home state to get the care I wanted.
2) I chose a single mastectomy instead of double and will live with the risk of retaining some breast tissue and decide down the road if I am ok with that.
3) I chose autologous reconstruction over implants due to the risks of toxicity.
4) I found a surgeon to attempt nerve preservation to allow me to have some sensation left.
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With love and gratitude,
Elizabeth
