Making breast reconstruction decisions with Lynne Cook
When Lynne Cook was diagnosed with breast cancer in 2012, getting reconstruction was important to feeling like herself again. Making decisions about breast reconstruction, and dealing with the extra surgeries, and sometimes the complications, of reconstruction are an important part of the breast cancer experience that isn’t always discussed.
Lynne spoke with Janine Guglielmino, MA, LBBC’s vice president of mission delivery, about how she made reconstruction decisions, the support that helped her through the process, and the common concerns about reconstruction she hears as a volunteer for LBBC’s Breast Cancer Helpline.
Lynne Cook was diagnosed with breast cancer in 2012. She lives in Southern California with Ed, her husband of 30 years. Together they have two wonderful children, Christina and Eddie, and two equally wonderful grandkids, Jacob and Amaya. Their family is complete with three sweet rescue dogs, Petey, Pogo, and Pebbles. Lynne’s interests include cooking, reading, swimming, animal rescue, and volunteering with LBBC. Read more.
Janine Guglielmino, MA
Vice President, Mission Delivery
Janine oversees the implementation of our programs, publications, and research initiatives. In this role, she contributes to the content and design of all core LBBC activities. She leads needs assessments and evaluative activities that ensure the high quality of existing and future programming. Read more.
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Hi everyone. My name is Janine Guglielmino and I am vice president of mission delivery for Living Beyond Breast Cancer. I'm very pleased to be with you today. We are coming up on Breast Reconstruction Awareness Day, so we decided we wanted to have a conversation about common questions that folks in our community have about breast reconstruction. I'm very pleased to be having this conversation today with Lynne Cook, who is a Living Beyond Breast Cancer Helpline volunteer, and we're excited to have her here to share her expertise and the thoughts of members of our community. We know how important it is to hear from people who understand what you're going through, especially when you're making a decision as personal and as individualized as breast reconstruction. I'm really excited to have Lynne here to share a little bit about what she's heard from folks and her insights in terms of questions that you can ask your healthcare providers when you're trying to make this decision.
So welcome today, Lynne, thanks for being with us.
Thank you for having me.
So, Lynne, let's start by just having you share a little bit about your own breast reconstruction decision and how you made that decision, what your situation was.
Well for me, originally they had just found one lump. When I went to the doctor's office and they told me, “you know, you have the best breast cancer there is to have it's treatable, we recommend a double mastectomy” and it just punched me in the gut. I couldn't believe I was hearing those words. And 3 years prior, I had treated myself to a breast reduction and lift because I had lost some conservative weight. So that was a treat to myself. And all I kept thinking was, I just want them, I want my boobs the way they are, you know, I want them perfect. I want them perky. I spent a lot of money on those, you know. Can I have them back when you're done?
I asked what my options were to make sure that they were the most real-looking, the most natural feel. I had two options, the TRAM flap or the expanders and implants. As it turned out, my body type wouldn't allow for the TRAM flap. So I had to have the expanders and the implants or the other [option] was no reconstruction at all, which just was not an option for me at the time. I just wanted my body back. I wanted my self-esteem. I, like most people, feel that we need to have them, to define us. So I opted for that surgery.
Yeah, so I can hear that. Just the shock of a breast cancer diagnosis, and then you knew yourself, you knew that your breasts were important to your body image, so really wanted to hear what your options were.
And as you're saying, there's a lot of different options. You can choose to go flat. You can choose to get your breast reconstructed with tissue, and you can choose an implant. For folks who are wondering about those medical decisions and the different choices involved, I encourage you to visit LBBC.ORG. We have a ton of medical information.
So you knew, Lynne, that you really wanted to go through breast reconstruction. How did you choose implant versus tissue? What kind of issues did you think about?
Basically, the doctor just said “your best bet is the expanders and the implants.” And I didn't know any better. When I went to my first surgery 3 years prior, when I got the breast reduction in the lift, at that time I knew that I never wanted anything foreign in my body. Now move forward 3 years and all of a sudden, oh, well, I'm going to have something foreign in my body. It was a hard pill to swallow, but the doctors assured me plenty of women do this all day long every day, voluntarily. You'll be fine. So that's how I just came to think of it. I lived near LA, the capital of boob jobs. So, I knew a lot of women, all my friends, a lot of them had that and I just quizzed them. How does it feel? Do you feel any different? So that helped a lot, too.
So you asked around, you talked to a lot of other people, and probably the experience you had thinking you would want one thing and then once it happens to you, realizing you want something different, is a really common one.
When you are taking calls on the Helpline or talking to people, what kinds of questions do people ask you about breast reconstruction, when they're trying to make their decision?
They have the exact same questions that I had. Are they going to feel real? Are they going to look real? Am I going to be desirable? Other questions are, if I have implants in, will they cause cancer? If I have implants in and cancer grows back, is it going to make it harder to be detectable?
So there's a lot of not just the aesthetics part of it, but the concern of another cancer. Another big question was expanders. Everybody asks, I heard they hurt. Do they? They want to know if they really hurt as bad as they hear that they do. So that's the majority of the questions that I've heard over the years.
So people really looking for real talk, to find out from another woman what it feels like.
And what are some of the questions that you encourage callers to ask their doctors as they're trying to make decisions? Because on the Helpline, obviously we're not giving out medical information, we're giving peer support and sharing experiences. What kind of things do you encourage people to say?
I tell them, that's great that your doctor recommends, one way, but ask them if there are other ways, and then also ask the pros and cons of each one.
Then that way you can make the decision that's right for you, not what the doctor thinks is right for you. It's really important to be able to be your own voice and understand all the ins and outs so that you can make the decision that fits for yourself.
Thanks, Lynne, that's really helpful. I'm just curious, what inspired you to become a Helpline volunteer and to answer these types of questions?
Oh, that's easy. There was a nurse actually, when I was getting my lymph node surgery, that just changed my whole journey. She made something so terrifying and frightening to me — I'm going to cry, just thinking about it — into something a lot more positive.
I was going for the surgery and I was crying my eyes out. I was absolutely crazy. I'm like, if I can't get through this for a simple lymph node surgery, how in the world am I going to get through a double mastectomy?
I was completely inconsolable. And she took the curtain around my bed and closed it. And she took off her sweater and she lifted up her scrubs and she showed me her breasts that had just been reconstructed 2 years prior. The doctors show you pictures and they’re hideous and, you know, flat black and white pictures. To see real life ones that were just reconstructed, and to see this person who has just moved on with life, and she's just doing her job … it was just such an incredible thing to be able to visualize what I may look like and how I may be moving forward. That she just didn't skip a beat. I was determined at that point: I am not skipping a beat.
Because she did what she did for me, I felt that I had to give that to others. Because I'm sure there was plenty of other people like me, who was so scared and didn't really have anybody to talk to who truly knew.
So I owe that all to her, the whole journey, the whole journey was her one little act of kindness.
She was the right person at the right time. We are so grateful that you choose to volunteer with Living Beyond Breast Cancer and to give your gifts back to the community and to people who are in that moment of fear and don't know how they're going to move forward with their experience with breast cancer. Thank you so much, Lynne.
Sure. Thank you.
Before we wrap up, is there anything else that you would want to share with our viewers about things they should think about as they're making their breast reconstruction decision?
You know, for me, when it was all happening, I just couldn't wait to get it all over and done with. It's like, OK, next appointment, next appointment, next surgeon.
Let's just get this moving. You know? And I literally drove my doctors crazy, especially when it came to the expanders. I was like, oh, you can only put in 10 CCS, put in 30. Let's get this thing going, let's get me filled up so I can move on and get my expanders.
At the time I was finally ready to do the exchange surgery and get the implants in, it was towards the holidays. And I'm like, you know what? I've had enough. I do not want to be down and out during the holidays. I just want to shop, I don't want to be in pain. I don't want to have to behave myself and sit there and just do nothing. So let's just move this to after January. January came, they called to verify my appointment. Oh, let's make it March. I'm just not ready yet.
I'm enjoying life. And, long story short, it wasn't until 2018 that I actually did the exchange surgery and got implants in. And, I only did it because I thought I was going to get laid off from work and I wanted to do it while I still had insurance. So I did that.
It's been 2 years and I still don't have areolas or nipples.
I guess what I'm trying to say is everything seems so immediate and so important at the beginning. You put so much pressure on yourself to just get back to normal, and sometimes it’s just OK to make that little turn and just decide, you know what, it's just not that big a deal anymore. There's other things that are just so much more important.
I've realized that I've had a great support system.
My husband's like, whatever you want to do, I don't care. It allowed me to do what I feel that I needed to do, versus having the pressure of what I felt like other people wanted me to do, or my own pressures that I put on myself.
So I just want everybody out there to know it's your own timeline, your own timeline. You know, you have to listen to your doctors of course, of when you have to have stuff done, but as far as getting yourself whole, that's your timeline.
Thank you so much, Lynne, thank you so much for sharing your story with us today.
Thank you very much for giving me the opportunity. I really appreciate everything that you all do at Living Beyond Breast Cancer to make this such a great org, and thanks for letting me be part of it.
Thank you. And I want to say to everyone who's listening today, I know that it's very overwhelming when you're trying to make a breast reconstruction decision, a lot of medical issues, a lot of personal issues. Please go to LBBC.ORG and take a look at the materials on our website. And if you want to talk to Lynne or other Helpline volunteers who have been through this experience, we encourage you to go to lbbc.org/helpline or call us at 888-753-5222.
And before we go, I also would like to thank Natrelle, who is a generous sponsor of our Helpline and allowed us to produce this content.
Thanks to all of you. I hope you have a great day. Stay safe and stay healthy. Take care.