I don’t think anything can prepare you for the loss of body parts, sudden or planned.
There is always a lot of talk in the support group about having a double mastectomy (DMX) with immediate reconstruction. The process consists of breast implants that act as tissue expanders. You go in periodically to have more saline solution injected into the expanders to stretch the remaining skin left behind after mastectomy to prepare it for the actual saline or silicone implants. From what I’ve read this is an extremely long and painful process to return you to some semblance of your original appearance fraught with possible infections, rejection, necrosis, and more surgeries to correct issues that arise. This seems to be the way a lot of cancer treatment centers do it, but to my surprise this is not the way they do things at Moffitt! When I met with the plastic surgeon for the first time I was told he would not even discuss reconstruction with me until I was a minimum of 6 months out from radiation (radiation was part of my original treatment plan, but more on that later). He did say that the only reconstruction he would do for me, for many reasons, was a latissimus dorsi flap procedure. Having already researched the different reconstruction options and seeing after pictures I immediately burst into tears, this was the last thing I wanted. You can look it up for yourself if you wish, but there isn’t a lot out there as it isn’t done that frequently and for good reasons. Basically they open you up all most all the way around move the latissimus dorsi muscle from your back to your chest creating a protective pocket for the implant (radiation leaves the skin damaged and super thin). This leaves you with a scar almost all the way around your body (spine to sternum) and a whole host of complications and limitations for the rest of your life (that muscle is where it is for a reason). For a couple of aesthetic mounds on my chest that I will never feel again the trade off is quite simply too great! Talk about a gut punch! Once I wrapped my brain around the idea that I would be completely flat chested for the better part of a year before reconstruction could begin I decided to begin seeing a therapist and to join another support group for “flatties” as they lovingly refer to themselves. I’ve learned so much from the lovely ladies in that group about just how unsafe and very possibly detrimental breast implants are, especially to cancer patients, that I have decided I will not be having reconstruction. Had I not joined that group I probably would have learned too late about breast implant illness and just how many women “explant” there implants because they cause so many awful side effects one of which is lymphoma (another cancer)! This group may have saved me from so many unnecessary surgeries and pain. I can wear foobs (fake boobs/prosthetics) when I want and be flat and comfortable when I want. Breasts are accessories to me now.
Some women just want their breasts removed to get rid of the cancer and if I could have felt distain for them it probably would have made it easier, but I never had a beef with my breasts. I was happy with what I had and how they looked, so the day before surgery was extremely mentally taxing! Talking about and preparing for the surgery and actually having it done, there is just nothing that can truly prepare you for any of it let alone the aftermath! I left all prep and cleaning of the house for that day, which was also my birthday, so I’d be occupied. I thought it would make it easier, I was so wrong!
The morning of surgery I don’t think I cried once. I must have cried all the available tears the day before. I think I just shut down and did what I always do use humor to insulate myself, I don’t remember much about that morning. Fun fact, I put googly eyes on my breasts as a funny surprise for the surgical team. I wish I could have seen their faces, especially my breast surgeon, when they opened my gown, but I was out before I even got to the operating room. I was told afterward that they had had the intended effect. I was up and roaming the halls within the first hour after. I’d never spent a night in a hospital before, so I had no idea what to expect. I didn’t sleep much with the nurses and doctors coming in to check on me, administering more pain meds every 4 hours, milking my drains (I had 2) etc… The staff at Moffitt were absolutely amazing, they were all so kind and caring! I also had lymphovenus bypass syrgery at the same time, to reroute the lymph drainage of the 13 lymph nodes removed, to prevent lymphedema.
Home to recover -
A lot of women talked about sleeping in a recliner for the first month, that it just made it easier, but I wasn’t going to buy a recliner just for surgery, especially since we’d recently sold the one we had. Instead, I bought a wedge and planned to sleep on the couch to make getting up and down on my own easier. Well, best laid plans and all, I ended up sleeping in bed with the wedge and it was light years more comfortable than the couch. My husband Jeff has been amazing through this entire journey from chauffeuring me to appointments, emotional support, cooking and keeping me hydrated, cleaning, grocery shopping, setting the alarm to give the next dose of pain meds, milking my drains multiple times a day, and bathing me, to just letting me vent, freak out, and/or cry. I could not have asked for a better nurse and partner!!!
Seeing myself for the first time after surgery was really hard. I had planned not to look right away, but caught a glimpse of myself in the mirror and decided to just get it over with and I’m still not used to seeing how I look now and I wonder if that will ever change. I should probably be grateful that the cancer is gone and to still be alive, but I guess I need more time to grieve…
A few tips if you are going through this as well -
The incisions on my chest along with all of the other scars from biopsies, my port, various needle sticks etc.. are a constant reminder of this journey and all my body and I have been through. I miss my breasts every single day and I’m still trying to learn to love and accept my very changed appearance and brokenness. I’m now a little over 4 months into healing and while the incisions are pretty much healed my shoulder, well shoulders really, are a different story… on to physical therapy…
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