#109 Recovering Without Reconstruction with Cyndi Cook

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This week’s I’m thrilled to welcome Cyndi Cook to the podcast to talk about life without reconstruction. 
 
Just under half of the women who go through breast cancer treatment do not have reconstruction.  

For some, it’s a choice and for others, they don’t have the choice. 

Either way, Cyndi’s voice lends confidence to this situation and opens the mind and the eyes to the beauty beyond the boobs. 

 

Read the full transcript below:

Laura Lummer 0:00
This is Laura Lummer, the breast cancer recovery coach. I'm a healthy lifestyle coach, a clinical Ayurveda specialist, a personal trainer, and I'm also a breast cancer survivor. In this podcast, we talk about healthy thinking and mindfulness practices, eating well, moving your body for health and longevity. And we'll also hear from other breast cancer survivors who have reengaged with life and have incredible stories to share. This podcast is your go-to resource for getting back to life after breast cancer.

Hello, and welcome to the breast cancer recovery coach podcast. I'm your host, Laura Lummer. And I am very, very happy that you are here listening now.

If you are a repeat listener to the show, thank you, thank you, thank you for coming back. And if you're brand new welcome, and I hope you get a lot of inspiration out of today's episode.

So for the month of October, my commitment to you was to put out as much inspiration as I could to help get your mind on positive things and to be more hopeful than sometimes hearing the scary and sometimes discouraging stories that go around during the month of October.

So in the first show for this month, I talked about statistics that are encouraging and forward-looking and positive statistics for survival for breast cancer survivors. And I also mentioned that about 44%, according to breast cancer.org, about 44% of women do not have reconstruction after breast cancer. And I realized then that I had never done an episode on that particular issue, which I think is really important.

So going flat or not having reconstruction could be the result of a personal choice. Or it could be a circumstance that you because you're simply not a candidate for reconstruction that can result from anything from the type of breast cancer you have to maybe the aftermath of radiation, there can be all kinds of different issues.

So this week, I want you to hear from one of my empower members and a recent Revivify graduate on her choice not to have reconstruction, and how she thinks about and lives with that choice.

Now I know that you're going to love listening to her, because her name is Cyndi, and she is so confident and so inspiring. And this month is all about inspiration.

So let me tell you a little bit about this gorgeous woman. Her name is Cyndi Cook. She's a wife and mother of three young kids. She's a teacher and an active health enthusiast. Cindy was 44 years old, and she was diagnosed with stage two triple-positive breast cancer. Now she had lived a clean and healthy lifestyle. As I said, She's a health enthusiast, and you can tell when you see her. And so her diagnosis was a shock to her and to everyone around her. So she was given the news one week before the start of the 2019-2020 school year. And she decided that she would just put on a brave face, and just show up for work until the day of her surgery, which was scheduled for three weeks from the date of her diagnosis.

So having to make some fast and furious decisions, Cyndi was left with very little time to do research and explore other options. So she says that from going to scans and appointments and lab works and consultations, she ultimately decided to go with a bilateral mastectomy without reconstruction, which left her with an aesthetic flat closure. But as you will hear her amazing attitude, she has found the silver lining in her new life on the flat side as she calls it, and she enjoys the freedom of being, quote, young and breathless, unquote. And that's the way that Cyndi sums it up.

So I absolutely love her confidence and her strength, and just the beautiful way that she accepts and lives with the choice that she made. Because ultimately, that's what we have to do, right, we have to make tough choices. And then we have to find the way to live with those choices, living the best and fullest life that we can, right? And that's what Cyndi does. So without making you wait any longer. Please meet Cyndi cook.

Welcome, Cyndi to the breast cancer recovery coach podcast. I'm thrilled that you're here with me today. I'm really excited to talk about this topic.

Cyndi 4:28
Well thank you for having me Laura. I just love spending time with you, as you know. So, just a little background. I have my first mammogram at 44 doctors finally talked me into it. I was doing thermal thermogram or thermal scans prior to that. And so the doctor said now you're 44 you need to go in. I said okay, fine, I'll do it. So I went in and it was March of 2019. And everything was fine. Came back normal within a month.

I had a lump and I was in pain the whole time afterward I had nothing. I mean, I my breasts were very small. That's another story. But I'll tell you about that later. Okay, so the the technician and I were laughing the whole time we're like, oh, look at you know, looks like a beaver tail or you know, it looks like a duck. And I'm like, smashed up against the the machine. But so it came back fine. And then I had this lump and I thought, Oh, it's just scar tissue. It's nothing to worry about. They said I was fine.

Well, the lump never went away. It kept getting bigger and bigger. And so finally my nipples started inverting. And I thought, you know what it was August By this time, and I thought I better go in and see my doctor. So I went in, and she said, Yeah, let's get that looked at it. But that doesn't seem right. So went back in, did another mammogram, did the ultrasound, and they said, it looks suspicious we you do a biopsy.

So when in biopsy confirmed it. And so it was fast and furious. I was diagnosed at the end of August. Right at teacher week, going back to school. So I got I got the news as I was sitting in meetings all week and kept it very private just told my principal and that was it. And within three weeks, I was in surgery. Well, that's how fast it happened.

Laura Lummer 6:22
Really fast. So lean back up for a second, what is a thermo scan? And why were you doing those instead of a mammogram?

Cyndi 6:29
Thermalscans are basically it's infrared. So what they do is they you're in a room and it's it's cool to a certain temperature and the technician takes a camera and scans and what they're looking for is blood flow to certain areas. And so if they're detecting any type of blood flow, or they can kind of see if there's a mass or anything like that, and and then it's sent to radiologists, radiologist reads it and it's just a less invasive procedure. Again, that's not covered by insurance. It's it's more along the natural path homeopathic type of medicine.

Laura Lummer 7:07
Mm hmm. Interesting. And then what are your thoughts on? This is interesting that you brought up? You did a mammogram, it showed nothing? And then you had a lump? What are your thoughts on that after having had your experience? Did you look into that more to do things like why didn't that initial mammogram see anything?

Cyndi 7:25
Honestly, I and I would never tell anyone never get a mammogram because I believe that they early detection is key. But I think that possibly the cancer was there. And with the pressure that was put on the tissue, I think it possibly released it. And that's just my theory. I don't know that that's the truth. I told that to my oncologist. And he said, You're not the first person that told me that he said he's heard that story before. And it was immediately after. So it was like I said, I could not touch my left breast for a month. And then that lump popped up. True. My surgeon said that's not the case. Yeah. But my oncologist, he's like, no, I believe you. So...

Unknown Speaker 8:04
I think there's a lot of things that are anecdotal to us as survivors, because I know for myself and things that I've brought up to my oncologist or to a breast surgeon or whatever, and said, This is what I've experienced, or this is what I hear from women, I work with that they've experienced, and they say, I hear that, but there's no studies on it. Mm hmm. Right. So there's that side of it as well. So let's talk about going through your treatment and coming up on the idea or the decision that you had to make with reconstruction.

Cyndi 8:37
Well, I did have a little experience with implants before so I had had breast implants in my 20s and I did the Hokey Pokey with them. I put the left one and to the left one out and it was just like, I had problems with them. So I had I had a leak and then had them replaced and then after I had kids, they worked again and I said you know I'm just done. So that's my say do the hokey pokey they're in and out. So yeah, so I knew what it was like to have implants. And I thought you know, I'm not doing this again. So when I found out that it was cancer, I knew immediately I said like, I'm not doing this again. And so I had already had it set in my mind that I'm just going flat.

Laura Lummer 9:21
You're going flat. Yeah. Did you hear a lot of objections from your husband, your family, your friends did when when you or did you talk about it to people before you did it? And if so, how? How did they react?

Cyndi 9:37
You know I'm once I make up my mind there's no stopping me. So I think everybody just kind of went with it. They didn't. It was in the doctor was on board. She just said you know you would be a tough case any ways to do reconstruction. She was really happy with the fact that I was willing to go flat. And you know, the one regret I do have is that, you know, I never really asked my husband. I never did. I was We ever since are getting ready to go into surgery. And we're sitting there and this is, you know, pre COVID. So he's sitting in the room with me. Yeah. And you know, they're putting IVs in and and I asked him, I go, do you think I'm making the right choice and he looks at me, he goes, You never asked me. And that that really kind of just took me back. And I feel bad about that. And now, because I didn't talk to him, I just was like, this is I have to make this decision. It's not an option for me. And I had a good girlfriend too, that had breast cancer. And I talked to her a little bit before and she said, if she had to do it all over again, she wouldn't have done reconstruction.

Laura Lummer 10:37
Is that right? Did she have issues with her reconstruction as well?

Cyndi 10:41
She not so much that she had problems with it, but just comfort she said it doesn't doesn't feel the same. And she said, You know, there's no feeling and she said she always has to wear a bra even to sleep in a sports bra. Yeah. And so I just said, you know, I'm just, yeah, I'm done. I'm just going flat. And that's all there is to it.

Laura Lummer 11:03
Yeah. So I think that for most people, when they hear that, or, you know, the fear of losing your breasts, first of all, when we get a cancer diagnosis, what are the top fears dying, losing our hair, and having our breasts removed? I never was like, Oh, my God, is my hair gonna fall out? So how do you feel afterwards? Like after the fact? How do you deal with not having breasts and the whole idea of sexuality? breasts representing femininity? Or do you feel judged for not doing reconstruction? And he had experience like that?

Cyndi 11:41
No, I don't feel judged at all. I feel free to actually do I mean, I always laugh. I always, you know, tease people. I'm like, Huh, guess what, I'm not wearing a bra today, you know. And I'll wear scarves. Sometimes at first, I was a little self conscious. But after now, after a year out, I have the prosthetics that I can wear. And I honestly don't even wear them. And and I feel like there's there's very many choices out there that you can wear clothing wise. And and some people don't even notice. And if you tell them they're like, Wow, I didn't even notice you didn't have breasts. So for me, I just I accent other areas instead of focusing on that.

Laura Lummer 12:23
Mm hmm. I love that. Yeah, that's great. And so going back to you said you didn't talk to your husband about it before until at the moment? Did you guys talk about it afterwards? Does he? Was he just on board with it? Or how do you guys handle that now.

Cyndi 12:38
Um, he knew that it was going to be a tough decision, and that it was going to be my decision. And I think, you know, hindsight, looking back, we found out I had a gene mutation. And so it wasn't braca it was a different one that's highly associated with breast cancer to the tec2 gene. And so it was, you know, we didn't know that until after surgery. Because again, it happens so fast that genetics testing didn't come back. But in the end, I mean, he knows that I made the right choice for me. And honestly, I didn't want to have to go through any more screening or mammograms again, I and I would have always had that in the back of my mind. But okay, can it come back? Even though statistically unlikely, but I would have thought, Okay, well, you know, what, what if it comes back again?

Laura Lummer 13:27
Mm hmm. I think that's such an important point. Because that's a big fear, obviously, fear of recurrence is is a huge fear. And it's really important for everybody, when they're making their choice, to make a choice that you believe will bring you peace. And I mean, we can't know what's coming in the future. But if you save yourself, wow, where I am right now, I think if I don't do this one thing, I will be anxious about it forever. And it's really important to know that and to be okay with saying you have to do what's right for you.

But I've worked with many women who they'll call really to talk through this idea of reconstruction, to reconstruct or not to reconstruct in so many times, they're physicians, friends, everybody are telling them, you're going to regret it. You're gonna regret it if you don't do it. Right, or, you know, and it's not a one and done, people can go back afterwards if they do choose to get reconstruction. Do you have Have you talked to other women about it since then, do you have women approached you or you know, people who have had a diagnosis and want to know about the reconstruction?

Cyndi 14:37
I have and actually I have a few other friends that have gone through the same thing that both or a couple of them have said, I wish I wouldn't have done the reconstruction and so the only I did have a complication with mine. So I had drains, and I'm sure you remember drains it felt like they were forever.

Laura Lummer 14:57
They were forever.

Cyndi 14:59
I had them for three weeks, and then they took them out. And then I did way too much, because that's just what I do. And so I went back in and had to have the drains in for another three weeks. So I was six weeks total with drains, I, it was Halloween time, and I told everybody I was going to be Dracula scare all the kids. But um, you know, when they asked me about going fly, just that, you know if that is your choice, and that's truly what you want to do, just listen to your doctor. If they tell you four weeks, take four weeks, I took a total of 10 days off from work. And in between I had a hysterectomy too, so I weigh overdid it. And there are so many support groups out there. Now there's for flat women, there's all over Facebook, you can find different groups and fashion groups and just out there for support. So I was really never a Facebook person before until after my diagnosis, because I thought you know what, I need to find some other women like me, because I didn't know anyone like me. Mm hmm. And they're out there. And you see now the dove commercial and all of the other international Flat Day. And it's kind of it's becoming a bigger movement. It really is.

Laura Lummer 16:12
Well, you posted a picture for international flat day, which is beautiful picture that I shared. And with the statistic that breast cancer.org said up to 44% of women choose not to have reconstruction and to go flat. And I was surprised to see that this statistic was that high. And I think that a lot of people are I think that a lot of people make the assumption that you just get reconstruction that is a part of breast cancer treatment. So I think it's really important that you get out there and your voice is heard. Because I think a lot of people who choose not to do it probably feel alone. You know, and I've I've worked with women and met women who have said, you know, like you I'm done, I don't want to go through more. You know, I want this to be over. I worked with one woman who was very athletic and loved Spartan races, loved doing triathlons, and Spartan races. And she said, the idea of putting off what I would love to do for another year, just so I could look like I had breasts. It just wasn't worth it. You know, she says I want to get done. I don't want to get back to living my life and doing the things I love. And so she elected to go flat so that she could get back to racing, which is awesome.

So I love that, that advocacy, and knowing like you said that there are groups out there. Because I think a lot of women are resistant to that, you know, they're resistant to being in a group and they think I'm airing my dirty laundry, I'm talking about things that are so private, but you're in you were in my revivify course, you're in my empower course. So what do you feel about talking about private and personal things in a group now with those women?

Cyndi 17:59
I think just having that voice and knowing that you're not alone, it's there's so much comfort in that. And especially with women and revivify we all have different stories, yet we all have the same path. You know, it's just, it's it's truly amazing that we can all come together and and just share our stories because you do you feel alone, and you don't, unless someone else has walked that walk you you're on an island by yourself. Mm hmm.

Laura Lummer 18:29
Yeah. And there's that gap right between the way you feel and the way you think people think you should feel, or the way people think you should act or the things they think you should be doing. Yeah, so it is so nice to I think not only connect with other breast cancer survivors, but with those who, like you said, walk the same path to be able to connect with people who made similar decisions. And I would love for people who hear this to know that one there. There's support out there. There's groups out there, there's connection out there, because I don't think everyone's been as fortunate as you I mean, you're very confident woman. And you know, you have a healthy, healthy relationships around you that support your ability to make that decision to move forward. Where I know a lot of women aren't as fortunate to have that kind of a situation. And as I said, even to have physicians that back them. When when talking about doctors, of course we want them to be talented medically. But we forget sometimes they're only people. And every person has their own perception of what a human body should look like. Right. And I think that sometimes it's very difficult for a doctor not to interject their personal opinion on what a body should look like when it's done. What do you think?

Cyndi 19:48
I agree, I agree. And again, I was so fortunate to work with an incredible surgeon that supported me all the way and, and to my family. Everybody was just so supportive. So, I, again, like you mentioned that I was in a different, different space than a lot of women. But I think you have to really trust your gut and your instincts. And you just really have to listen to that inner voice that's telling you the right thing to do. And you'll make that decision.

Laura Lummer 20:20
I worked with a woman one time who in tears said to me, she was not eligible for reconstruction, because she had after her mastectomy had had so many infections. And so she was not eligible for reconstruction. And she said to me, in tears, no one is ever going to want me. I'm never going to find a man who wants me now. What would you say to someone who's in a position where they either aren't eligible for reconstruction, and they need to be flat? Or someone who's trying to decide whether or not to go flat after reconstruction? How do you feel like what advice would you give them on being a sexual desirable, whole and wonderful human being? Without breasts?

Cyndi 21:07
That's a good question. Um, I always go back, there's a song, it's called scars, and it's a Christian song. And it's just it. For me, it just brought me closer to my faith. And, and I've thought about, you know, tattoos and things like that, and joking, in joking, you know, but it's just, it's truly, you know, I just look at these scars, and this is who I am now. It's, I'm still me, but I'm, I feel like I'm better almost that, you know, I'm stronger, if you will. And I don't think that that boobs or anything else really makes you who you are. And just finding that inner peace and knowing that just what's on the outside is not what's on the inside. And if someone doesn't want you for that reason, then you're the wrong person, anyways.

Laura Lummer 21:56
Thank you for that.

Cyndi 21:58
You know, girlfriend go.

Laura Lummer 22:01
And hundred percent agree, I'm so glad you said that. Yeah. And it is that I think getting back in touch with who you are and feeling like I am the human being right, not the breast. And that's what other people want is a wonderful human being in their life. I think, again, I think it also goes back to you know, we women are always harder on ourselves. How many times have you or you have friends, or they've heard somebody say, you know, I want to get whatever it might be a surgery or lose weight, or, you know, do this and their husband is says, I love you just the way you are. I think you're awesome, just the way you are. And then we put it back on ourselves. No, no, no, no, no, I need butt implants. My butts just is not big enough, you know, right. And it's so interesting that we say it's going to be other people's perception of us. But it truly comes back to our own perception of ourself. Right, being confident enough to see yourself as a whole wonderful human being that another person would want in their life. Absolutely. Is there any message that you would want to give to anybody out there who's considering making this decision or maybe even struggling with the decision that they did make?

Cyndi 23:19
I would say for women that are struggling, do a little research, look online, there's pictures, because that really helped me it took away the scariness of it all. I have. And I said, because I had no idea I never seen mastectomy. I think the most shocking thing to me was seeing a chest without nipples. Mm hmm. Because there's nothing there. You just have these big giant Frankenstein scars, which eventually go away or they get a lot better, right? Look at the pictures and say, Can I see myself like that? And I will tell you as I used to love to run, and it was the first time I ran without a shirt on it not out in public. But in my home on the treadmill. There was some freedom there. And I tell you what, now I go. Now I know why men are so good at running. They're just because there's nothing flopping around there. And I didn't have you know, and I would get up early every morning and exercise and I didn't have to put a sports bra on and I would always talk myself out of getting up because I gotta put a sports bra on. I don't want to do that. And now I'm like, t shirt. I'm out so Mm hmm. But yes, definitely look look for the silver linings and things look for if you're considering making that choice. Think about I don't have to wear a bra. I can wear halter tops and not have to worry about straps I can wear you know things that you never even thought of clothes that I would never wear before I'm wearing now and I feel like I look better now though those styles than before. That's awesome. But again, do do some research, look into the Facebook groups that are for flat women. And you can see and get an idea because everyone's story is so different.

Laura Lummer 25:10
Mm hmm. I love that. And I also think too, for even though Think of your friends who have never had breast cancer never did had to make a choice about reconstruction. How many women do you know who are, let's say, over the age of 25? And have had children who are happy with their breast?

Like None?

None

I get sad either this or that. And even those who've had reconstruction, they feel very different. You always know that there's implants there, you always feel a difference in your chest because of them. And and there is no sensation, right? All of the nerves are removed, everything is moved. So it's not like there's some fantastic benefit. It's really, in your mind. It's really what you can live with, right? how you see yourself and what you can live with. Did you have any concerns about having an implant in your body? I know a lot of people struggle with is this toxic? Is this healthy? Should I have this?

Cyndi 26:10
No? No, I wasn't worried about that, honestly. I mean, I've had them for 12 years. So that wasn't a concern. But the one thing that I was really excited about was being able to be on a massage table on my stomach and not have anything that was uncomfortable. So I was really looking forward to that.

Laura Lummer 26:28
They're so uncomfortable with your other stuff. Like that's such a good point. Yeah. It's like, Oh, they don't move like boobs used to move. Right. Right. Yeah. That's so interesting. Well, I love that you're able to talk about your experience with the confidence that you haven't feel so good about yourself. Because I think another thing to Cyndi is, you're young, you're beautiful. And I think that a lot of people think, well, if you're not going to do reconstruction, it's okay if you're older, because we think that, you know, once someone hits a certain age, they're now asexual, or whatever our ideas are about aging in this life. And it's more difficult to get their head around someone who's young and healthy, and athletic and beautiful. And, you know, and married, and all of these things, making that choice, because we almost have this, you know, this idea that, well, it doesn't matter if you're, you're older, and you're not going to have a sex life. Right? Yeah, but that's not true at all.

Cyndi 27:27
No no, and and there are plenty of things out there that you know, you can wear that you can still feel good in. So...

Laura Lummer 27:39
like prosthetics and things like that. If you wanted to wear certain clothes or have a certain presentation.

Cyndi 27:44
Yeah, I'm sure you can wear it. And they have bralettes now that are adorable that you can wear. And that's true. And again, the prosthetics are wonderful. They, they're a little heavy, and that's why I don't wear them, but they look in your in your clothes, you can't tell the difference. Mm hmm.

Laura Lummer 28:01
Yeah. Well, the implants are a little heavy if you do reconstruction anyway. So there's that. But you can't take them off. No, no, no, well, I love I love your message. And I love your attitude, and my hope that that gives a lot of other women a place of comfort, and, you know, just a little more confidence in themselves and a little more satisfaction with their own choices, or maybe some peace of mind with the choices that they're looking forward to having to make. And I also want to say that, Cyndi, you are a part of our breast cancer recovery group as well, which is a free group for all breast cancer survivors. And so you know, if you're out there and you want more support, you can go to the breast cancer recovery group on Facebook, it is a free Facebook group. And you can ask questions, we've got Cyndi there she can be you know, she can give you some input and insights. All the women in that group are so supportive. It's such a wonderful group of people. So

Cyndi 28:57
and I'm happy to answer questions and anything any throw it at me out. I'm open book. So awesome. Bring it my way. So thank you so much for for all you do. And you truly are an angel, as I've told you, before you are put on this earth to help women and to get through this. And without you I wouldn't be where I am today. So thank you so much.

Laura Lummer 29:20
Thank you. Thank you, Cindy. And thank you for for making the time to be on the show today. It's just such a wonderful message. And I just love your energy and everything about you. So I'm so happy to have a chance for more women to get to hear you. Well, thank you.

All right. I love her. I know you love her too. After listening to that interview Cyndi is just an amazing woman and I wanted you to hear from her. Because I know that we each have our own individual struggles. And it always comes back to the way we choose to think about them. Right circumstances are just what they are whether the circumstances I don't have breasts or the circumstance is my best friend we can reconstructed or whatever else they might be that you're struggling with. perspective is everything and it isn't easy. It's challenging. Cyndi did a tremendous amount of work in revivify. And just was really focused on overcoming the thoughts that she had that weren't serving her. And that's why I wanted you to listen to her because that's what managing your mind. That's the place that it brings you to is this very competent, very positive outlook that allows you to enjoy life even more.

So thank you again for listening more great stuff coming through the end of October and I look forward to talking with you again next week. Until then, be good to yourself and expect other people to be good to you as well.

Transcribed by https://otter.ai

 

 

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