• Fri, Oct 21 2011

‘I Got My Breasts Removed At 35, Even Though I Didn’t Have Breast Cancer’

Removing My Breasts

 

So I made the decision to have a bilateral mastectomy and a hysterectomy. And that was just the beginning of it.

You’d think making the decision is when things get easier, but it’s not. Just like I got my ‘Master’s Degree in cancer,’ I had get my ‘PhD in reconstructive surgery.’ People think that getting a mastectomy means you’re either flat-chested or you get implants, but we have a lot more options nowadays. And I just felt breast implants weren’t me. In a mastectomy, they remove all the breast tissue so you’re just left with a skin envelope and the implant, which can limit people’s range of motion and affect the type of exercise you can do, plus it’s a foreign object in your body. I teach and practice yoga and pilates and I lift weights, so I didn’t want to be in a position where I couldn’t be as active as I wanted to be going forward. I just wasn’t comfortable making that sacrifice.

So I researched another type of reconstructive surgery where they take skin and fat from another part of your body and use it to reconstruct the breast with your own tissue – this is called analogous tissue transfer or “flap” surgery. This was like science fiction to me: It’s a complex microsurgery where arteries and veins are severed in one part of your body, along with a chunk of your skin and fat; it’s molded and then moved up to your breast after the breast tissue is removed so that they can hook up the artery and veins to create blood flow to the new tissue and create new breasts. They look and feel like real breasts, and they’re you; there’s nothing unnatural about them. So I immediately decided that that’s what I wanted if I was going to do it.

At first, doctors told me I wasn’t a good candidate because I didn’t have enough fat tissue. While it’s nice to hear that you’re thin, I was really upset to not be able to have the reconstruction I wanted. At first I thought I’d just get implants, but I found surgeons who specialized in microsurgery and flew across the country to consult with several of them. Ultimately I chose to go with the doctors in New Orleans, Louisiana at The Center for Restorative Breast Surgery, which specializes in the kind of reconstructive surgery I wanted. Despite my previous issues with not being told I wasn’t a good candidate, my doctor in NOLA said “no problem!” In fact, they were bored by me; I didn’t have an active cancer, I didn’t have previous surgery to correct…I was easy!

So I had the first phase of my surgery there in the beginning of May. They did what’s called a ‘nipple-sparing mastectomy,’ which involves aggressively removing the breast tissue while sparing your skin and nipple. Then they took tissue from my lower abdomen and moved it to my breasts, connected the blood vessels, and I stayed in the hospital a couple of days while they monitored the blood flow to make sure the tissue stayed connected. When I explain it to people I say it’s like I bought a new pillow and am putting it in my old pillow case. I stayed for about a week in NOLA and luckily didn’t have any complications or issues.

Then in mid-August, I went back for second-stage surgery, so they could just ‘clean up’ from the previous surgery and take fat from other areas of my body to fill out my new breasts and make sure they’re the right shape. I got a hysterectomy at the same time, as I wanted to minimize the need for another surgery and another round of anesthesia.

Post-Surgery: It’s Not Over

 

But it’s never over. You’re never done with all this stuff. Now, I’m 35 and I’m effectively in menopause; another thing I didn’t think I would have to experience at this age, but it’s better than having cancer.

I made the decision to go on hormone replacements, which isn’t necessarily an option for a lot of breast cancer patients, because the cancer can respond to hormones. I actually requested that I wake up from the second surgery with an estrogen patch on because I didn’t want hot flashes, skin and hair issues, or some of the longer-term symptoms of heart disease and bone density loss. Hormone replacement therapy hedges all those things off; it’s a real quality of life issue.

You have to learn so much about everything and really be your own advocate. No one tells you what to do. They give you the options and then say whatever you’re comfortable with; whatever you want to do. It’s good but it’s also infuriating at times—you want somebody have all the answers and the best course of action, but a lot of the choices are ones you need to make yourself.

It’s funny; I went back to work about two and half weeks ago and while I didn’t tell everyone this level of detail, people were generally aware of what was going on. The general response was: “You’re done! Now everything can go back to normal.” And it just couldn’t be further from the truth. It’s always on my mind; I’m always thinking about it. And it hasn’t been long since my surgeries, so I’m still dealing with how my body is reacting to not having any ovaries, uterus or fallopian tubes. It’s kind of a shock to everything, everything needs to recalibrate after that; it’s like a marathon, not a sprint. I’m sure at some point I’ll get some distance from it but right now it’s pretty fresh so I’m trying to work through that and at the same time be really helpful to other people. I’ve already mentored a dozen or so ladies who are going through the same type of surgery. It’s great, because the other people in our lives really can’t understand everything we’re going through.

 

Reactions From Friends and Family

 

When you go through something like cancer that doesn’t have a finite beginning middle or end, you find out who your real friends are. It made me realize that people have a really finite amount of attention to devote to other people, and a lot of my friends just needed me to be okay so they could move on with their lives. They’re not the people you know you can rely on in that instance, but it’s understandable to a certain degree.

And then, some friends said some really stupid things to me when I first started. Of course, people say really stupid things about cancer all the time. As my mother says: There’s no manual on how to react when someone gives you bad news. You just go with your gut. When I told one friend that I was considering a mastectomy, she just said, “I could never do that.” I had another friend who literally took a giant step back from me when I explained what I was going to do, like somehow what I was going through was contagious. I’ve also had people say things to me like: “Well, you can just eat better and exercise and you won’t get cancer,” which it’s a little insulting. Obviously, those things are important and I do them anyway, but it implies that somehow I’ve done something wrong when it’s just in my genes.

There were some people that I really wanted to feel support and understanding from so I recommended they watch the documentary “In the Family” which is about a BRCA+ young woman grappling with these issues. My friends who actually watched it came back later and said they understood better and that they did support me.

So eventually people came around, but it’s been tough. People need you to be done at some point, they need it to be over so they can move on. I just don’t know if that ever happens. It certainly doesn’t happen this soon.

 

What You Should Know If You’re In My Shoes…

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  • Alicia Kirk

    My breast cancer was detected solely through a mammogram. Thanks to the blog of Findrxonline mentioned easy access checking. There was no pain, and my lump could not be felt by four doctors. I was a lucky one having a lumpectomy and radiation. My numbers came back good enough that I did not need chemo. I have been cancer free for exactly one year. Other that taking tamoxifen and having a small scar on my left breast, you would never know anything about the problem. Never to hot flash… or anything.

    • Briana Rognlin

      Wow, Alicia. So happy to hear that you’re cancer-free and doing well. Did you have a family history of breast or ovarian cancer like Dana? I’m glad it sounds like you caught it early; we hope that this post makes more women think about their family history and getting screened like you did.

  • B M Lovelace

    Mammogram failed me. I had 10+ years of faithful mammograms. Clear mammogram in May and Dx’s with a huge 6.7 cm tumor in July of the same year. Ask about your breast density!

    Dense tissue is a biological risk factor in that you are 6x more likely to develop cancer if you have dense tissue. In addition, it is a medical fact that mammography often misses cancer in dense breasts. At best, a 50/50 success rate.

    Be Aware! In the spirit of Breast Cancer Awareness Month…

    • Briana Rognlin

      Thanks for mentioning this – it’s definitely an important part of breast cancer screening that not enough women are aware of.

      In addition to the information that Dana provided here, I wrote a post awhile ago about a new kind of screening that’s more effective than mammograms for women with dense breasts:

      http://www.blisstree.com/live/breast-cancer-prevention-molecular-breast-imaging-3-times-more-effective-than-mammograms/

      But we’ll be posting more about it during Breast Cancer Awareness Month, too.

      Thanks again for the important reminder, and we hope you’re doing okay since your diagnosis.

  • Linda Ritter

    I know Dana. She is a brave person who always appears that she can handle everything. Even she -had a harrowing time with many nights of sleeplessness. Her bravery is special in that her wish is to help other women know that there are others to whom they can go to get personal information and support without platitudes. Dana will be there as a resource who has felt as you feel, and has had to make decisions that you have to make, and cares for all of you that are afflicted with this gene through no fault of your own. I hope you use this special person’s experience to help you through a difficult time time in your long , healthy, carefree life.

  • Canaduck

    A very brave woman and a good post. Thank you for sharing with us.