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@alexdemadeleine

patricia (43) lost her breast: “I couldn’t look into the mirror for a very long time.”

9 min read
Cycle Care

Three years ago, they found DCIS - the preliminary stage of cancer - in her right breast. She had to go through several operations such as a mastectomy and a breast reconstruction. Patricia shares with Cycle how she experienced this difficult time.
@alexdemadeleine
Patricia {ervaringsverhaal}

Patricia's story is a heavy one, but strangely enough it wasn’t all bad. She was able to find some light in the darkness. “Ultimately, this experience has enriched my life.”

She was 38 years old, married and mother of two young children. Not really the time in your life where you want to think about how fragile your body actually is. Yet, this was exactly what Patricia was forced to do when she found out there was something developing in her right breast, something that shouldn't have been there at all in the first place. “My breast was feeling weird and heavy and it just didn’t feel right. I went to my GP, but they didn’t think it was something too serious. Even so, I was sent to the hospital because they thought my age was a reason to look into it further.  I went to the hospital so they could take a picture of my breast. I thought it would all be okay. I really didn’t expect that I would be there for long, so I even brought my little daughter Charlotte with me.”

But Patricia’s expectations caught up with reality. The photo of her breast showed signs of an abnormality and so her breast had to be punctured multiple times with a thin needle to extract cells for further examination. This all took a very long time and Patricia, together with her daughter Charlotte, had to spend a lot of time waiting in the hospital. “Charlotte wanted to stay with me when I got those punctures, but of course she couldn’t stay with me. She had to wait in a small room while there were people putting needles in her mother’s breast.”

“The result was so unexpected”

“I got the results after a week of waiting. I can still remember how I told my colleagues at the bank ‘See you later!’ I thought I’d go to the hospital for my results and be back at work the same day. When I entered the hospital with my husband Richard, a nurse and a resident doctor were waiting for me to sit us down. Once we were sitting in our chairs the surgeon came in. Before she had even completely entered the room, she already told us she had bad news. I was so shocked, everything became a blur, and I couldn’t hear anything she said after that. She sat down and told us the news, and luckily Richard was there to listen to the surgeon. The result was so unexpected and the way the surgeon told us didn’t help at all. I often think back to that moment. It was already very bad news, the least she could have done was inform us with compassion and some human decency.

I remember we left the hospital both still in shock. Eventually we parked the car somewhere and started crying together. I had to call my parents but I just couldn’t do it, so Richard called my mother for me. After those first 3 hours, we both knew we had to take care of things and got into some sort of action mode. It felt like I entered a survival mode. For myself, for my husband, and for our two little children. ‘I don't want to die, I want to see my children grow up,’ that was all that went through my head at that time.

Richard and I immediately talked about my future treatment. My hospital visit left me with a bad feeling and I didn’t feel particularly keen on going back there, so did I really want to follow treatment there? My mother-in-law was treated in the Antoni van Leeuwenhoek hospital (AVL) and she had a good experience in that hospital, so we decided to go there as well. During this time, I would just sit in the bathroom and cry uncontrollably every single night. I have never felt so heartbroken and lost in my entire life, why did this have to happen to me? Why not someone who is much older than me? Will my health ever be okay again? What will I look like after this?”

“I often asked: can’t you just remove a piece of it, instead of removing everything?”

“A day full of examinations followed, of which I received the results in September that same year. They found the pre-cancerous stage of breast cancer in the cells, which is called 'ductal carcinoma in situ' in doctor's terms.”

DCIS, what is that?

Read more

“In this stage, the cells already have the shape of cancer cells, but they don’t have the ability to continue to grow and possibly spread in the surrounding tissue. Further examination by the pathologist after my operation showed that there were already small spots that could spread further in the tissue. If I had waited any longer, those spots would’ve really become a problem. All in all, there was a tumor of 3 by 10 centimeters containing 3 or 4 spots that were really malignant. This meant that the tumor was pretty big and that there was no other option than to amputate my whole breast. I often asked the doctors: can’t you just remove a piece of it, instead of removing everything? This wouldn’t leave my mind for a very long time and I still struggle with the fact that my entire right breast is gone. I don’t have any feeling in this new breast, it all just feels very different and unnatural. Even now, after 3 years, I sometimes still back away a little whenever the children softly bump against it.

Meanwhile, I spent hours and hours doing research and talking to colleagues, friends, and even friends of friends to find out what all my options were, which doctors were the best, and how I could best handle my reconstruction. Eventually I found an oncologist with whom I felt comfortable. There was one team that would remove my breast and another team that would place a so-called ‘tissue expander’ to stretch my muscle. I heard from other women that they had all kinds of reconstruction options, but the only reconstruction option that was offered to me at the AVL was a reconstruction using silicones. But I didn’t really feel comfortable with silicone, especially when you could also use other materials such as your own tissue. Thankfully, I had the time to think this all through at my own pace.”

“With or without a nipple?”

“A big question that I had on my mind was whether I would wake up with or without a nipple. During the operation, a puncture was done on the nipple to see if there were malignant cells behind it. That turned out to be the case, so it was removed just to be safe. That was something I was very upset about. The lymph's connected to the breast were also checked, but in the end, only the sentinel lymph node was removed.” (The sentinel lymph node is the first lymph node that collects the lymph fluid from a melanoma. If there are melanoma cells in the lymph fluid, the sentinel lymph node is the first place they’ll show up, ed.). Fortunately, the sentinel lymph node turned out to be clean and the malignant spots turned out to be so small that the doctors decided that chemo and radiation weren’t necessary.

The first three weeks after the operation were hell. I was in so much pain because of the muscle being stretched, I couldn’t even laugh or cough without it hurting. I couldn’t look into the mirror for a very long time. I was afraid to be confronted with my own body. At one point, I finally found the courage to stand in front of the mirror again, together with Richard. It was such a heavy moment and many tears were shed. I felt incomplete and that feeling never fully disappeared. I can praise myself lucky that I have such a wonderful husband who has my back and gives me confidence. He always tells me I’m beautiful and that I have pretty breasts.

I decided that I absolutely didn’t want a reconstruction with silicones so I had to find a different place to make that happen. I ended up at the Jan van Goyen clinic. Doctor Gijs van Selms has over 20 years of experience and works with the Monobloc Hydrogel CMC breast implant, which was exactly what I wanted. I had a very pleasant conversation with him and I immediately knew that I wanted this man to perform surgery on me. He also lifted my other breast and I couldn’t be more positive about this doctor. After the operation I had a nipple tattooed, but unfortunately you don't see much of that anymore. You can also have a little tip made from your other nipple. But that nipple would always remain a bit hard and I didn't like the idea of that.

It has been three years since then and I’m still alive and 100% clean! I’m still here, and now I get to watch my children grow up and hug them. It’s been a difficult time, but this experience has also enriched our life. We’re walking down a different path than before and we’re more aware of certain things. The connection we have with others is even stronger now. Richard and I know that we can count on each other and I know he’d walk through fire for me. In order to live as healthy as possible we changed our lifestyle: We barely drink any alcohol and we immerse ourselves in self-development. I read a lot about meditation and Richard listens to podcasts by Richard de Leth about nutrition, sleep, and exercise. Life cannot be made, but it’s definitely manageable. That knowledge gives me perspective and energy. I also made a career switch and am now a medical pedicurist. Working with people in this way gives me more satisfaction than the financial world ever did.”

“Live! This mom is still alive”

“If I hadn’t gotten sick, I’d probably still be working 32 hours a week and I would’ve lived such a rushed life. Now there’s so much more peace in our lives and the children don’t have to go to daycare anymore. We have less money, but still plenty to live a comfortable life. To live! I’m still alive. This mom could’ve also not been here anymore. But now I get to watch my children grow up and hug them. It makes all the difference that I have someone who supports me and gives me self-confidence. We’re able to talk, chat, and laugh about anything. That’s my happiness. Sometimes I still have to cry about what happened to us, but I’m glad I persevered. It could’ve turned out very differently.”

Richard adds: “We went through a heavy storm together. Patricia has gone through so much pain, I had to see her suffer and be there for her. This also had an impact on me of course. The powerlessness I felt was difficult, but at the same time it made you think about the big life questions: ‘Why am I here and what do I want to do?’ It has brought us a lot, but with ups and downs. When the storm passed, we had to assess what the damage was to our boat, repair it and give everything a place. I think Patricia struggles with how her chest looks now more than I do. The most important thing to me was that she stayed alive, I wanted that more than anything. The moment we found out she wouldn’t need chemotherapy is more burned into my mind than the fact that she doesn’t have a nipple anymore. We have children together and have built a very nice life together. We are already in a different phase, where it’s no longer just about appearance. I still think she is very beautiful, perhaps even more beautiful than how she feels about herself.”

What other women should know

Does Patricia have any advice for women who still have to start their treatment? “Don’t immediately agree with your doctor but do some research yourself as well. There are so many options out there. I’ve talked to many other women, even women I didn’t personally know. I really recommend just calling and reaching out. It can give you support and comfort knowing that you’re not the only one who has to go through this. It was also helpful to talk about it honestly and openly with the children. Books from the library helped me to explain what was going on in simple terms without, of course, unnecessarily frightening and burdening the children. But most importantly, keep communicating with your loved ones. Share your sadness and seek support from the people who are close to you. That also brings positive things into your life, it has helped us to grow even more.”

Richard: “And start thinking about your own lifestyle. What can I personally do to prepare my body for this surgery? I think it’s a missed opportunity when a regular doctor tells you: ‘Stop smoking, but it’s fine to keep the same (unhealthy) lifestyle’.”

Patricia: “Why did this happen to me? Did our lifestyle contribute to this diagnosis? We may never find the answer to these questions, but what we can do is make sure that we live a healthy life, now and in the future.”

Do you want to know more about how you can examine your own breast(s)? Read this article with a video that guides you through this step-by-step.

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