There’s no denying that getting a mastectomy is a scary experience. Not only are you in the middle of your breast cancer journey, mastectomy results in a significant physical change. You may feel like a part of your identity is gone after a mastectomy. Or that you have lost your womanhood or aren’t sexy anymore. While these emotional challenges are certainly, well, a challenge, you can overcome them.
Here at I’m Taking Charge, we often write about dealing with the emotional difficulties of breast cancer. This month we’re focusing on redefining perfection. Since you were drawn to this article, you might also be interested in our article from this month about finding your new normal after mastectomy.
As usual though, nothing quite compares to hearing from women who have first hand experience.
Two Mastectomies, One Family
Lindsey was diagnosed with invasive breast cancer this year at the age of twenty-two. It was recommended by her medical team that she undergo surgery quickly. And Lindsey decided to have a double mastectomy to reduce her risk of recurrence.
Throughout this time, she felt extremely scared about how her body would react. She didn’t sleep on many nights. And she felt more and more emotionally drained in days leading up to her mastectomy. Further, Lindsey felt sad about putting her life plans on hold. At the time, she hadn’t finished school and she dreamed about having a family.
To help herself cope, Lindsey started the Instagram account tatatomytatas. She held a Booblerette party with her friends and family to say goodbye to her breasts and underwent fertility procedures to ensure she could have children in the future.
After her mastectomy, Lindsey had immediate breast reconstruction on her left side. Since her medical team was uncertain whether she would need radiation, she had a breast expander placed in her right breast. She is currently planning to have her reconstruction surgery in the fall.
Lindsey’s mother, Merle, also has personal experience with breast cancer.
She was diagnosed in 2007 with DCIS and decided to undergo a lumpectomy. Following her procedure, Merle completed twenty sessions of radiation and her oncologist suggested that she go on Tamoxifen. When it was suggested, Merle’s oncologist didn’t say how long she would be doing hormone therapy. It turned out that she had to take Tamoxifen for ten years.
In 2017, after Lindsey had been diagnosed with breast cancer, Merle went to her semi-annual oncologist appointment. Based on her mammogram and blood test results, her oncologist declared she was cancer free and could stop her hormone therapy medication. Although her daughter was currently undergoing chemotherapy, the news of being cancer-free made Merle ecstatic.
Unfortunately, Merle felt a lump on May 1st, just two days after being told she was cancer-free. She found the lump during a “Feel It On The First” self examination. Feel It On The First encourages women to complete a self exam once a month to keep track of any changes in their breasts.
A Mother and Daughter’s Journey
We interviewed both Lindsey and Merle and asked them many of the same questions. In doing so, we hope to provide you with a unique glimpse into how two women of different ages dealt with their mastectomy.
I’m Taking Charge: What were your initial thoughts and feelings about getting a mastectomy?
Lindsey: At first, my initial thoughts were that it wasn’t going to be a big deal. I had only known one person (prior to my surgery) who had received a double mastectomy and she got it prophylactically. It was something that I had decided to do on my own because of my age and the potential (future) risk factors.
Merle: The decision to have a bilateral mastectomy was one I made prior to receiving the results of my biopsy. I had previously been diagnosed with DCIS (ductal carcinoma in situ) seven years earlier and decided that I didn’t want to relive this experience again. With Lindsey being diagnosed at 22, I felt it was only a matter of time until they would confirm there was another malignant tumor.
How did you feel once the procedure was done?
Lindsey: After the procedure, I was not ready – emotionally and physically. I was 22 years old, active, healthy and all of a sudden, my body felt like it was completely ripped apart. I wish there would have been a better way to prepare for the surgery, but no matter whom I spoke to, everyone healed differently. I think one of the worst parts of the double mastectomy (for me, at least) were the drains. I had a total of three and they stayed in for about a month. The reason why I had them for just about a month was due to my age – the younger you are, the more fluids you produce and therefore the longer the drains stay in.
Merle: My surgery was unexpectedly complicated. The initial surgery for the double mastectomy went very well. However, ten days later, I became septic and was rushed to the hospital to have emergency surgery. One week later, I then needed to have a third surgery to put back what had to be removed during surgery #2 (they removed the implant in surgery #2 and replaced it with an expander in surgery #3).
How did you manage your thoughts/feelings after your mastectomy? Was there anything in particular that helped you deal with those feelings?
Lindsey: I think the main thing that helped me cope after my mastectomy was that I was surrounded by my fiancé, family, and friends (my triple F’s). People were constantly coming to my house, bringing me presents (which always helps), and making me laugh. Since I didn’t know whether or not I was going to get further treatment (chemotherapy), I was busy with fertility appointments as I wanted to preserve my eggs. This in itself took up a lot of my time, as I needed to get blood drawn every second day, take lots of hormone injections, and see the respective doctors.
Merle: I was well equipped for everything that came after the mastectomy due to Lindsey’s surgery six months earlier. Although I was prepared and knew what to expect, nothing could have prepared me for the emergency surgery. I didn’t realize at the time how sick I was and how serious this infection was. I later was told by my doctor that if left untreated, sepsis can be fatal. One night I was not feeling well and within minutes, I went from having no fever to throwing up with a 104 degree temperature. Lindsey insisted on taking me to the hospital, but since her immune system is compromised and she ended up in the emergency department after my first surgery, I told her to stay home and I would go with my parents. The timing could not have been worse as my husband was out of town on business and Lindsey’s sibling both live out of town.
Who or what did you lean on for support as you adjusted to your new body?
Lindsey: The main person I leaned on for support was my fiancé, John. Although, as a man, he didn’t know how it felt to lose your breasts, it was . . . his comforting words which reminded me that I was still beautiful in his eyes. Additionally, I relied on my sister and mother for their support. My mother attended every single doctor appointment with me and my sister made sure to make every situation light and silly.
Merle: My family and friends helped and supported me tremendously during this time. It is so important to have support and be surrounded by people during this journey.
What did you feel when you learned your mother would need a mastectomy?
Lindsey: After I learned about my mother, I was in absolute disbelief. I almost felt like we were on the show ‘Punk’d’ with Ashton Kutcher because there was no way that this could be real. A couple of weeks passed before my mother told me that she felt a lump, went for an ultrasound and then biopsy. I think she did this because I was in the process of chemotherapy and [she] didn’t want to worry me if her results came back as benign.
How did you feel when you heard that your daughter needed a mastectomy at such a young age?
Merle: As a parent, we were devastated. How can a 22-year-old have breast cancer? We had never heard of a woman her age having breast cancer. But Lindsey took the high road in spirit and determination. She was given many options. Ultimately, she chose the most aggressive path to rid herself of this disease. As parents, we couldn’t be any prouder of her and completely support her decision.
How was your experience with a mastectomy similar/different than your mother’s?
Lindsey: Our experience was completely different. Unfortunately, my mother did not have an easy experience as she became septic after her initial surgery. It has now been less than a month since her initial surgery and she has has two others since and eight drains in total. However, although there were so many differences, we did in fact share a few similarities. The first similarity was that the same surgical oncologist and plastic surgeon operated on us. The second similarity was that we were both thrown a ‘booblerette,’ which basically means that we had a party to celebrate the ‘goodbye of our breasts – and say tata to my tatas.’
Is there any advice that you gave your mother as she adjusts after her mastectomy that you had learned from your own mastectomy?
Lindsey: I didn’t have too much advice to give to my mother, other than how she should shower, how she should sit and lie and bed, and to absolutely rent a hospital bed (for the entire month of post-op). Other than that, my mother sort of lived my experience with me. For example, she slept in the bed next to me, she showered me, emptied my drains, and helped me get into the car. Aside from being thirty-five years older than me, she more or less knew what she was expecting.
Did being with your daughter through her mastectomy affect your own mastectomy experience? If it did, how so?
Merle: I absolutely felt more prepared as I was Lindsey’s primary caregiver. However, different things happen to different people and although Lindsey did not have any negative side effects, I did. One thing that I learned was that no matter how many people you talk to and how much advice you get, you can never foresee what will happen.
Is there any advice you would share with other women who have to adjust to physical changes due to a mastectomy?
Lindsey: My main piece of advice to other women is that what you initially see will fade and disappear. You cannot be alarmed because your scars with be fresh and they will be new to you. Depending on what you feel comfortable with, you can opt for direct reconstruction or go flat! I don’t believe that there is one right way as it truly depends on your individual desires!
Merle: What I learned from my experience and Lindsey’s is to remember you are a work in progress. You may not like what you look like immediately post-mastectomy, but most things can be fixed. It’s a journey that may take more than one surgery for you to be happy with the way you look. The important thing to remember it that they are only breasts and what truly is important is your overall health! That being said, this is easier for me to say being sixty-one than Lindsey who is twenty-two.
Thanks to Lindsey and Merle for sharing their experiences! Feel free to explore our website to read more stories about patients’ experiences with breast cancer, lumpectomy, mastectomy, and breast reconstruction.