Explaining the Disease: How to Tell Your Children You Have Breast Cancer

Explaining the Disease: How to Tell Your Children You Have Breast Cancer 2016-10-12T17:57:23+00:00

September 24, 2013

Amy Casher: Welcome to Symphony Sisterhood Breast Cancer dialogues. I’m Amy Casher. Today, our guest is Dr. Shenin Sachedina, founder of the Central Florida Breast Center in Winter Park, Florida. Dr. Sachedina is a board-certified surgeon specializing in breast disease. We’ll be discussing Dr. Sachedina’s children book, Metu and Lee Learn about Breast Cancer, and talking about how parents can more effectively talk to their children about breast cancer. We’ll also be speaking with one of Dr. Sachedina patients, Candace Watson, about how the Metu and Lee Book helped her and her husband in discussions with their children about the disease. Welcome, Dr. Sachedina and Candace.

Dr. Shenin Sachedina: Hello.

Candace Watson: Hi, Amy.

Amy Casher: Dr. Sachedina, can you please tell us a little bit about why you decided to write Metu and Lee Learn about Breast Cancer?

Dr. Shenin Sachedina: When I started my breast practice in 1996, it was apparent that we were lacking resources for children. What was really interesting is, a lot of my patients would come in with very similar stories. They would have difficulty with their children. Their children would be acting up. They would become distant. What I would do is, actually on Fridays, which is my administrative time, I’d have these kids come in and we would talk about what’s going on. The reality was, a lot of these kids had the same issues and the same questions. So what I decided to do was, I decided to write a book. This was supposed to be a small book for my practice which obviously became more much than that but it was to give families a tool to open dialogue and open a discussion with their kids. What I had found very clearly is, once these kids were educated, they did really well at home, with the diagnosis, their school grades started to come up. So there was a significant link of how when you educate children, you empower them. So the whole purpose of Metu and Lee was to educate these kids but also to give parents a tool to actually open a conversation with these children. The children really do quite well if you educate them.

Amy Casher: That’s wonderful. Can you describe for our listeners the Metu and Lee story and walk us through how the book educates children about breast cancer and helps them with their fears?

Dr. Shenin Sachedina: Well, the Metu and Lee characters are all characters that have a symbolic meaning. If you go on our website, www.metuandlee.com, you will actually find these characters and what they mean. For example, Chemo Commando is a droplet with an attitude. Then you have Radiation Rod who laser-zaps all the bad cells. All of these characters are actually rooted in medical terminology, which is, for example, in radiation, you are literally laser-zapping the bad cells. If you break it down, that’s exactly what that is. So what these characters do is simplify and educate at the same time. These are all things that the kids can relate to and young adults can relate to. It’s very easy to understand. We talked about chemotherapy and what that is, we talked about radiation and what that is, what to expect. Metu is a little boy and Lee is the girl. They go through a series of questions that they ask Dr. S and at the end, you will find a “To do” list for a family,

[essentially] what the kids can do and what daddy can do. Then I think overall, it just kind of gives a sense of hope because most people do not die from their breast cancer. I think it’s important for people to realize that.

Amy Casher: How do you think most parents without a resource like your book handle discussions about breast cancer with their children?

Dr. Shenin Sachedina: Again, I think it really depends on the children, the age group. A lot of families struggle and rightfully so, I mean, if you think about it, one in eight women are expected to get breast cancer in their lifetime. October is all about Breast Cancer Awareness Month. These children hear all of these stories about breast cancer. They see the bald heads. They see the chemotherapy. They see the tears. The thing is, that’s so powerful whereas I think it’s very difficult for families when they don’t open up and have a discussion with their children to get beyond that.

Amy Casher: Candace, I understand that you were diagnosed with breast cancer in March of this year. Can you tell us a little bit about how your children reacted to you telling them about your diagnosis?

Candace Watson: Sure. The very first day of my diagnosis, we went right home and we told them. We felt that there’s no hiding it because it was the first day of our spring break and any and all of the plans that we may have had, had to be put on hold because of all the battery of tests that were going to happen that week. My husband actually did most of the talking. He started with, “Everything’s going to be okay but mommy has cancer. Dr. Sachedina is going to take care of her. It’s going to be tough but we can get through this.” My youngest daughter had just turned nine and my oldest had just turned – what, she was 13 at the time. So the youngest I think was a little shocked. She started acting a little nervous, a little silly. The older one got it and she got teary. So we gave them the Metu and Lee Book that day and Dr. Sachedina had inscribed it to them so it was very personal.

Amy Casher: What do you think was the most difficult for your children in dealing with your diagnosis and treatment?

Candace Watson: I think that we still wanted normalcy for them. For any family, we strive to have a happy home and somewhat of a routine. The routine was just pushed aside when the cancer came along. We had different people bringing food to the house and lots of phone calls and flowers. So with all these appointments, we had different people coming in so there’s a lot of traffic in the house. We felt the love and we appreciated it but it also was showing the girls that this is a constant reminder that I had cancer. I cried a lot and they don’t like to see me cry. So that was probably a very hard part of it. I think also, the timing for radiation was right before their summer camp. So they would go with me to radiation appointments and that was a daily reminder for them as well. I would say I have to give credit to their dad because he was really great in keeping us all grounded throughout the diagnosis and the treatment. So the support system is very, very important I think.

Dr. Shenin Sachedina: I agree.

Amy Casher: What other advice do you have for other families dealing with a diagnosis of breast cancer?

Candace Watson: We’re a very open family, so we don’t hide very much and like Dr. Sachedina said a couple of minutes ago, it really depends on the age of the children affected. Again, as much as I wanted everything to be normal, there are times that were trying. I think we did a really good job at having them believe that everything is going to turn out okay. I think we did such a good job that sometimes, they weren’t very sympathetic toward me. [Laughter] It’s almost like, “I want a little more, come on.”

Dr. Shenin Sachedina: That’s what you get for having teenagers. [Laughter]

Candace Watson: Exactly, but I think it’s really important to have faith in your medical team which we had 100% faith in Dr. Sachedina. We still do, we always will. So that’s the first step. I think the fact that Dr. Sachedina went an extra mile in her care and concern of children for going about writing the book. That, and of course, my second recommendation be that I would want to recommend Metu and Lee. My thing is, I say they can’t all have her but they can have her book. [Laughter] The last thing I would say is, just rally and support and love one another because we only have so much time together and we need to appreciate that every single day.

Dr. Shenin Sachedina: That’s true. Candace has put it perfectly. People get this insight I think ultimately when they’re diagnosed and kind of get their priorities in order. The one thing I would say to add to Candace’s discussion about keeping the routine, as difficult as it is, I strongly recommend to families that they have to keep a routine and they still have to have kids accountable for their chores and things like that. It kind of keeps the family in somewhat normalcy because normalcy has to be defined as Candace said which I completely agree with but it’s very important to make sure that the kids are accountable for their chores and try to keep them as grounded as possible. These teenagers actually – that group and especially boys tend to have the most difficult time. It’s kind of something to remember. So when it comes to those like children that are of different age groups, I recommend that having the family discussion first. Then having a one-on-one discussion with each child and having an age appropriate discussion with them.

Amy Casher: Dr. Sachedina, are some children just too young to make sense of breast cancer and all that the disease entails?

Dr. Shenin Sachedina: I think age five seems to be a good age to start educating them. Kids are a heck of a lot smarter today than they were when I was growing up. [Laughter] I think they have so much more exposure, I mean, anything from Disney Channel and beyond. Again, going back to October, Breast Cancer Awareness Month commercials, the kids watch television and I think they have a lot of exposure. So I think they do understand. I think age five is an appropriate age to actually have a discussion. Introduce them to Chemo Commando, introduce them to Radiation Rod. I will tell you, a lot of these women actually bring their kids to the office. These kids will like run around and they’ll pretend like they’re Chemo, they’ll pretend like they’re Radiation Rod. It gives them a sense of empowerment as helping their mom and having a tool to basically localize their concerns.

Amy Casher: Speaking of helping and maybe to Candace’s point of maybe not feeling like things were too normal and she wanted a little more sympathy, one thing I love about Metu and Lee is the “To do” list for kids at the end. Can you share a couple of things that kids can do for their moms as they go through treatment and why is it important for them to get involved?

Dr. Shenin Sachedina: Well, again, getting involved – children like to do. They love to do for others and overall, kids, they’re pleasers. So if you take a look at the “To do” list, there are things like making a card or having a movie night and having popcorn. Basic things that are activities the families can do together. Then there’s a “To do” list for Dad but basically, it has to do with bring her flowers, arrange for whatever date night. I like celebration nights. I like celebration nights after radiation and after chemotherapy. Those are all things that the kids can look forward to. They can bake a cake on those nights, or cookies or brownies. What’s really interesting is, every step forward, every celebration is yet one more step towards getting better.

Amy Casher: Wow! We are so grateful for Metu and Lee Learn about Breast Cancer and for your wisdom, Dr. Sachedina.

Dr. Shenin Sachedina: Thank you.

Amy Casher: Also for your personal experience, Candace. It’s so helpful to hear how we can use this resource to help children and their families handle the challenges of breast cancer diagnosis and treatment. That concludes our dialogue for today. So thank you so much to both of you.

Dr. Shenin Sachedina: You’re welcome.

Candace Watson: Thank you.