Despite our medical teams’ best efforts when treating us for breast cancer, there is no way they are able to communicate everything we need to know as patients. In fact, the blow of a breast cancer diagnosis is so emotionally charged, even if we were told every nuance of what to expect throughout and recovering from treatment, our brains would probably not be able to process it all. That being said, it does not make it any easier when we discover side effects from treatment that add to the physical and emotional hardships this disease causes.
Nine weeks after my mastectomy, I was stunned and scared when my implants started to shake and spasm. I was immediately put in a state of panic. Did I lift something too heavy too soon after surgery? Was the purse that I had just started carrying again too heavy? Was my body rejecting my implants?
My mind raced as I spent a sleepless night waiting for morning to come and with it, my appointment with my oncologist. I was into my third of 13 consecutive weeks of chemotherapy, and I was terrified she would tell me there was a problem. Imagine my surprise, relief (to some degree), and then disbelief when I was told, “Oh, that is normal! If a patient brings it up we recommend putting a nursing pad in their bra to give them an extra layer of warmth. If someone could make a bra to help with that they would make a fortune.”
My immediate thoughts were:
- Why was I not told about this as a possible long-lasting side effect?
- What am I going to do about it?
I bought nursing pads. They did not work. I layered my clothing, but nothing helped. If I was in the frozen food aisle of the grocery store or out on a cold New England day, the discomfort was tremendous.
I visited lingerie stores in New York City, Connecticut, and Rhode Island. With each store I visited my frustration grew, as I was repeatedly told that there was no such thing as a bra that stopped spasms. And when the sales staff presented me with the bras they carried for “mastectomy patients,” they were utilitarian and unattractive, which pretty much insulted me. Yes, I had breast cancer, but was I supposed to live the rest of my life feeling unsexy?
My frustration grew when I went for a check-up with my surgeon and told him I was disappointed with the way my implants looked. He said to me, “Implants after a mastectomy are meant to make a woman feel good and look natural in clothes, not to look good when naked.”
I fought back the tears. With all the doctor visits leading up to my mastectomy and implant reconstruction surgery, I was never told this. Maybe it was naive to believe that my breasts would look “good.” Maybe I was trying to hang on to something positive while absorbing the whole breast cancer diagnosis and my personal treatment plan. But maybe, just maybe, someone should have clearly said “reconstructed breasts after a mastectomy will not look like natural breasts and there is a significant chance you will experience chills and spasms.”
I was sad and angry. I needed to try to get back some of my self-esteem, to feel sexy —and I needed to feel comfortable in my body, which meant alleviating the chills and spasms. I consulted with physicians and went on reputable breast cancer websites and found that this problem was not something I alone experienced. I was not odd, or the exception. There were many women involved in chats talking about their “foobs” being cold and shivering, and wondering what would help. Even more women were asking why this was happening.
If you are reading this right now and are wondering the same thing, here is the answer: When a woman has a mastectomy, her breast tissue is removed and the implants are placed under the chest muscle. With no breast tissue surrounding the implant, the body cannot regulate temperature in the breast area, so that area will always feel cooler than the rest of her body. In some cases, the implants will spasm.
Since nothing existed to help me, I knew I had to help myself. For almost a year I stuffed various materials inside my utilitarian bras, trying to see what combination offered gentle compression and relieved the spasms. I then upped my game and brought bras to the local tailor and had the materials sewn into the cups so I could fully experience what each had to offer. I sat outside in the winter months at 6 a.m., having my coffee and testing each one out. Bundled in PJs and a winter coat, did I spasm or did I feel warmth?
Finally, I found the perfect balance of materials that allowed me to go out in even the harshest of New England temperatures without my breasts shaking and trembling. Viola! The Infinite Beauty bra was born.
Okay, it wasn’t quite that easy, but you get the drift. It’s been a whole new world for me as my cancer journey kind of intersected with this new path that I ventured on. Having no experience in fashion, and finding a manufacturer, and setting up an e-commerce site has had many challenges. At times, the enormous weight of all I did not know about the intimate apparel world threatened to derail me, and I would wonder if I should just give up. But I know what a game changer these bras have been for me both physically and emotionally, and if they can do that for someone else who has suffered from this disease, then it is all worth it. I am learning as I go, and with every step forward I take, I heal a little more. Prior to my diagnosis, I would never have had the confidence to try something this bold.
I still have questions I wish I had answers for, like why my surgeon chose to make my incisions straight through the middle of my breasts, which makes wearing anything with a deep V difficult because my scars are visible. I see images on social media and know some women have their scars in other places, and I wonder why I was not given a choice or talked to about why my surgeon made the particular choice he did. I wish I had known to ask prior to surgery, but I was too overwhelmed. Maybe me putting this out there will help someone else remember to ask prior to their surgery.
The road to truly healing is a long one, but I am so thankful there is such a sisterhood among all of us who have experienced this disease and that so many are willing to openly share experiences, roadblocks they encounter and triumphs celebrated. Sharing our experiences with each other, offering support and advice, lifting each other up and knowing we are not traveling this road alone – that is the best medicine! We are in this together.
Roberta Lombardi was diagnosed with early-stage, hormone receptor-positive breast cancer in 2016. She is the chief executive officer and founder of Infinite Beauty and president and founder of Infinite Strength.
Do you still have questions after reconstructive surgery? They will be answered at the 2019 Living Beyond Breast Cancer Conference: Sharing Wisdom, Sharing Strength breakout session Ask the Experts: Lingering Questions After Breast Reconstruction with panelists Minas Chrysopoulo, MD, FACS, and Tara Dunsmore-Williamson. Register, or check back in late September for a link to the recording.
This blog series is sponsored by