Robin building the ceiling

Robin S

Robin, who always focused on living a natural life, never imagined that she would have plastic surgery. But a breast cancer diagnosis and the surgery it required challenged her assumptions about her values and her life.

I grew up on Long Island, which has a higher-than-average cancer rate, and I had been surrounded by cancer my whole life, but for some reason, it just wasn’t one of the things I was totally paranoid about. My mother had post-menopausal breast cancer, but I still didn’t see myself as high risk. So, when I was only forty and felt a lump on my breast, I freaked out. I went through the whole process of finding a radiologist and surgeon, and was certain it was for real, but it turned out to only be a cyst. It was 100% nothing. Still, it got the ball rolling. 

At the time, the doctor told me I was high risk, so I started seeing a breast surgeon every six months, getting annual mammograms and breast MRIs. As a result of that careful monitoring, they picked up something on my left breast that didn’t seem right. I was there for almost three hours of imaging, and at one point I told them they had to tell me what was going on. That was when I began to get a little nervous. I had to go back for a special type of biopsy another day, and then I had to wait for the results.

No Way of Understanding

I will never forget the day I heard the news. I am a decorative painter and was on a job at the top of an 18-foot scaffold when my phone rang. They told me I had invasive cancer in my left breast, and a different cancer, DCIS, in my right. I was in a state of shock. How could this be true? There was just no way of understanding that information. It’s a good thing that I had a friend on the job that day too. I don’t know how I would have gotten home without her. 

I spent the rest of the day making phone calls, starting with a call to my ex-husband because I needed to arrange childcare for my daughter, who was five and a half at the time. During this time, I was bombarded by everything it took to unravel the pieces of how I was going to move forward. I spent all my time researching whether I would have a double mastectomy of not. I needed to find a surgeon to remove the cancer, and talk to plastic surgeons to figure out what, if anything, I wanted to do about reconstruction.

My breasts have always been a major place of enjoyment for me, and I was super attached to my nipples. I couldn’t wrap my head around implants. I’m taking cancer out of my body…why would I put something foreign inside? When the time came to have surgery, thankfully, she was headed out of town with him for few weeks as he was getting remarried, so she would be shielded from much of the experience.

Learning More and More

The surgeon recommended a double mastectomy. Normally, they like to operate or start treatment within four weeks of a diagnosis, but I was struggling to get comfortable with what I needed to do. When I saw the first plastic surgeon, I was still in shock, and the whole culture of plastic surgery was so distasteful to me, that I felt uncomfortable being in his office and seeing all the brochures and everything. I am not someone who goes online to research things, but I did find women in my building who had been through breast cancer, and they had some insights about the whole experience that they were willing to share. That whole month, I was learning more and more.

By the time I met with second plastic surgeon, who was such a caring doctor, I had found out about the Diep-flap surgery, which seemed like a much more natural way to go. It would use my own tissue and body fat to do the reconstruction. We had multiple conversations, including discussion about nipple-sparing options and different reconstruction techniques.

It just unfolded over a few weeks, but all happened in a manageable way. It wasn’t until after the fact that I started to understand that the breast surgeon allowed me to wait for as long as it took.  After the surgery when I then had to find an oncologist for the next stage of care, an oncologist who I hated and did not choose to be my doctor, did explain that he thought it was a slow growing cancer that I likely had for 10 years or so that finally got big enough to see. That gave me some solace.

Intense Surgery

Both the breast surgeon and the plastic surgeon were in conversation with one another to coordinate the surgeries and care. The plastic surgeon could go in through the same incisions that the breast surgeon would need to do make to remove the cancers, but it would be a big surgery. I don’t really like hospitals—the only time I was in a hospital was to give birth, and that was only 24 hours in the birthing center—so this was pretty intense. It turned out to be a 13-hour surgery. I still get emotional thinking about my mother, father and sister waiting for me to get out of surgery, especially after having gone through it all once before with my mom. It was scary. The hospital had already shut down for the night by the time I was done.

I spent five days in the hospital, and when I came home, I couldn’t walk. The holes in my body, and the drains and incisions—it was bloody and yucky, and that part was scary. It was very hard for me to make sense of the fact that they could cut me open and sew me back together again. 

I wouldn’t recommend this procedure lightly—it’s not for the feint of heart. And the constipation that comes after the surgery was ten times worse than having a baby. I was so motivated to do this type of reconstruction that it didn’t occur to me there would be issues. But it was hard, and you really have to have a lot of things, including a strong support system, to make this work and help you get through.

Rough Recovery

I got a lot of help from friends and family. People really rallied, and I hired help during the day so all of my care rehabilitating my body didn’t fall on my mother. My friends signed up to bring me food and a couple of friends and my sister even slept over every night for the first week because I really couldn’t walk for about 5 days. It was rough.

Once I recovered from the surgery, they started me on tamoxifen. Based on the onco-typing, they said I didn’t need chemo, but because the cancer was hormone sensitive—both ER and PR positive—the tamoxifen would help keep it away. It was weird to take the tamoxifen and trust that it’s doing what it’s supposed to do.

Lasting Side Effects

And now I’m in menopause. My periods stopped pretty much as soon as went on tamoxifen. Based on my sister and mother, I wasn’t anticipating menopause for a while still. I was used to my hormones, so this is also like a personality change for me. I felt like it stabilized me a little bit. It’s been a weird thing. However, being on Tamoxifen sent me into another spiral. I didn’t understand the side effects of drug induced menopause. Then I spent many months finding the right care for crazy anxiety. I learned about cortisol levels and took supplements like Sam’E and Gaba to help stabilize my mood. In the end I had to go on a mood stabilizer which did in fact help after a lifetime of never needing a prescription drug for mood disorders or depression. 

Now that the crisis is over, I’d like to go back to eastern medicine, but I find it hard to even identify someone who will accept my insurance and knows about taking tamoxifen. I wish there was something out there for people like me, who were premenopausal before treatment. It would be so helpful to have more information about that kind of support. As good as my doctors were about the surgery and getting me through the ordeal, once the cancer was gone, it was like “Good luck!” I feel like I am on my own with it all.

A Scary Word

I haven’t told my daughter that I had cancer. She knows that I had surgery and has certainly seen the scars. But cancer is a scary word for a little kid. She was away for three weeks when I had the surgery, which is the longest she had ever been away from me. I felt like I had put her up for adoption or something. That was so hard.

I never used to worry for my life and that I would be there for her, but, just before the first surgery, I was trying to decide if should write a letter to my daughter in case I didn’t survive. But, I remember discussing with the doctor where the incisions would be and I said, “I need you to tell me I’m going to see my daughter again.” He just wouldn’t let me go there and assured me I would be fine.

I have a history of being depressed and knew I was going to hit a wall with the cancer. I need to feel the real feeling, the bad feelings before moving on. Waking up after surgery was scary. If the blood vessels didn’t take, then Diep flap surgery would have been a waste. I was lying there not knowing if I was going to be ok, not knowing if the surgery was a success, but I had no voice. It was so frustrating. I couldn’t get anyone’s attention, then an intern came in and made a stupid comment. I had an anxiety attack right there. Having my friends and family for support around me was important, because they didn’t let me go down that rabbit hole. They didn’t let me stay in that place of fear for very long.

Listening to the Fear

I had a good therapist, a good acupuncturist, a good cranial sacral therapist. Together they helped me find the strength I needed. Everyone should have access to this type of supportive care. Thankfully I had insurance through the ACA, but I worry for the folks that don’t have insurance. Even still, dealing with insurance was a nightmare. They weren’t going to let me use the doctor I chose, weren’t going to let me have the procedure I wanted, said it was plastic surgery so not covered. Managing and negotiating this was hard. Every step was a battle, but my doctors worked hard to make it happen for me. 

I’ve also had experiences of shock and hyper-awareness and super thankfulness. I know I have a good life, and the whole cancer thing really drove that point home. Part of being strong is not being shy about any of it—being out in the open about my experience and my needs. Now, I tell people to take it one step at a time, to find a doc you like and trust, to find support—an online community or close friends, others who have been there before—and to hold on to a sense of perspective. But that’s hard. People are afraid when they hear they have cancer. And to be supportive, you need to listen to the fear.

Go Live It

I still get anxious about tests, which happen to coincide with my birthday. I worry about the cancer coming back. At the time of the surgery and oncotyping, we knew that it had spread, but the doctor said it was so miniscule that chemo wouldn’t have helped, but it worries me. Is it still there? Could it come back later? What happens when I stop taking the tamoxifen?

I’m getting to the two-year mark. This whole month has felt very substantial. I am trying to take stock in the amount of growth that has taken place. This falls into this category of how when traumatic things happen it really can change you. Somehow this grounded me more in a way that doesn’t totally have words yet. I am getting closer to finding those words, and I know I need to value this a little more. Two or three years from now this may become a blip. I don’t have full confidence that everything I feel now will stick. 

After the surgery was over, I knew I wanted to be in a relationship, even before I knew whether or not I was going to have chemo. I have since found a partner and have been in a relationship for the past year, which is very satisfying. I have a good sex life, but it is different. It will never ever be what it was before. Still, I feel like I have been able to hold onto the concept that I have one life to live, and so I need to go live it.

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