What to Say, And What Not to Say, with Dana Manciagli

When someone has breast cancer, it is scary for them – and for you! What can you do to really help? What should you say? Is it better to just listen? Here to shed some light on how to best support those who are affected by breast cancer is Dana Manciagli.

About Dana

Dana Manciagli is a three-time breast cancer survivor and currently living with Stage IV metastatic breast cancer. Her identical twin sister, Tracy, also battled breast cancer three times and cancer took her life in 2014. As a result of Dana’s experience as a patient, survivor, advocate, and caregiver, she is profoundly passionate about early detection, research advances, government funding and inspiring everyone touched with any type of cancer.


Adam: (00:35)
When someone has breast cancer. It’s scary for them and for you. What can you do to really help? What should you say? Is it better just to listen here, to shed some light on how to best support those who are affected by breast cancer is Dana Manciagli the three time breast cancer survivor and currently living with stage four metastatic breast cancer. Her identical twin sister Tracy also battled breast cancer three times and cancer took her life in 2014 as a result of Dana’s experience as a patient survivor advocate and caregiver, she is profoundly passionate about early detection, research advances, government funding, and inspiring. Everyone touched with any type of cancer. Dana, welcome to the show.

Dana: (01:16)
Thank you so much, Adam. It’s an honor to be here.

Well you sound like a dynamo that can just conquer a lot of things. I really can’t wait to hear from you. But first, is there anything from your story that we’ve missed and fill in some gaps for us?

Dana: (01:32)
Absolutely. We did not know we had cancer in our family, like so many people. And all of a sudden on my first week of my big job at Microsoft, I got that same call that we all dread. And that was back in 2002. So I was 41 years old. It was my second mammogram. So mammograms do work. It detected a change from my baseline. They caught it early. Stage 1, still was freaked out, had a lumpectomy, radiation, and then was diagnosed to ha be positive for the BRCA gene. And so I did the genetic testing and that really just meant that I was going to be on surveillance.

Dana: (02:13)
And, since my sister is an identical twin, Tracy, she of course was just, it was a given. She was positive. So she became a, was put on a surveillance program of every six months as well. So that was back in 2002 my first round with cancer and we thought we were done. Of course I had, I had all the prophylactic procedures done. I had my ovaries out were on surveillance. Well, three years later, Tracy was diagnosed with her first bout with breast cancer and it was aggressive, so she had a double mastectomy. This is in 2005 well, my oncologist looked at her results and said, wow, you guys, you know, this is aggressive for both of you when we’re telling story about two people, but really in one. And I had helped her through her double mastectomy and chemo. I then had a prophylactic double the same year, but turns out cancer was back.

Dana: (03:11)
So there was my second time, a second recurrence with cancer. Tracy’s first seven years went by. We had all that treatment and we are all good celebrating our birthdays together every single year as we always do. Seven years later, unfortunately Tracy’s came back again. So she went through massive treatment. Two years later, all that treatment just didn’t take and she was laid to rest. In 2014 my identical twin, I was her caregiver. I had my, of course, I was still checking out myself to be sure I could take care of her. And I was at clean bill of health and it was just a huge tragedy how this has affected our family. Unfortunately, six months after laying Tracey arrest, I found a tiny spot I’d had now had two best, a double mastectomy, all kinds of treatment, radiation, everything thrown at me and my cancer recurred, and this time, the breast cancer again.

Dana: (04:16)
But it had spread this time. And I was diagnosed with stage four metastatic breast cancer in 2015 and went through a full gamut of the maximum chemo, three surgeries later, another mastectomy, go figure. Three mastectomies, two boobies do the math. But if they do what they have to do, and I invited them to be aggressive and I’m, so here I am LIVING big living capital letters with stage four metastatic on treatment, daily treatment, quarterly shots, doing what we need to do to thrive in spite of living with stage four cancer. And that’s how I’m living my life right now.

Adam: (05:01)
Wow. Well you’re, you’re truly an inspiration from, from care giving to taking care of yourself. It’s certainly inspiring. Thank you. Thank you for sharing that story. And I want you to give us that perspective sort of from how you’ve interacted with other people. So throughout your family’s journeys, you’ve, I’m sure heard a whole range of things from people that didn’t really know what to say to patients or to caregivers or to survivors. Can you tell us a little bit about that and why is getting this right so important for someone that’s in that breast cancer journey?

Dana: (05:33)
Yeah, and this all started with Tracy and I together on the phone or face to face. We would just say, Oh, I can top that at, someone just said this, someone just said that. So we tried to use humor throughout our journeys and I still do poking fun at what happens to us medically and in the doctor’s office. I mean sometimes you just gotta laugh and not until we did with one another that was, and we actually documented at the time the Letterman show was hot and he was doing his Letterman top 10 the countdown. So we started filling out a, I got a Letterman Letterman here and then we started literally just sharing and writing, writing out the stupid things people say to cancer patients, survivors, anyone with cancer, just as always dealing with it. And we also learned that we gave each other coaching on: Hey, you know what? When things start getting bad for me, when people start saying things that make me feel really uncomfortable, I’m going to say something. And she say, “Oh yeah, me too.”

And we’re kind of bold out there people anyway, as you can tell. So we try to be, all of us has as, especially as patients and we try to take what other people are putting on us with a lot of forgiveness and patience and no, we listen, but we truly believe there’s a point where we need to be our best advocate, not only medically but emotionally and so much that’s coming at us can affect how we feel day to day. So we started this list, so that’s what I, I’m excited to answer your question with sharing what Tracy and I came at came out with and we didn’t just want to be, don’t say this, don’t say that, but really coaching on what things you can say almost arming everyone with your Go To list of just use one of these and you’ll be safe versus saying one of these where you’re stepping in some poop that you don’t even know.

Dana: (07:33)
Are you able to give us one of those Letterman top 10 phrases? I’m curious what some of your responses were to help people understand that that’s probably not an inappropriate phrase. I’m happy to do that because the reactions are quite interesting when you do try to truncate a conversation. Yeah, I’ll give you the most popular one right from the beginning. We could, we actually said we could bank on it. When you say I’m battling cancer or I’m in cancer treatment, or I’m a survivor. The first one out of 99% of people is I know someone who’s had cancer and let me tell you about them. Oh my mother-in-law had cancer, like dog had cancer. And they want to tell that person’s story. They don’t. It’s like you’re not even in the picture. And the sad part is some of those stories are, Oh, and they might say, I’m sorry, and I lost my mom to cancer.

Dana: (08:29)
So now they’re sharing with you how someone died and they’re in the battle. So the first most most egregious one, which is, I know the intent, they’re trying to say I can relate to you. Right? So, and they’ve tried to, it’s not one up thing, but it feels like it’s trying to relate, but very poorly. So don’t do that. Like everyone. It’s all about that person. So don’t offer your story. I’ve, I mean, I have had phlebotomists at my hospital with a needle in my arm. Read my chart. Oh, you have stage four cancer. Oh, I just lost my father to cancer. Are you kidding me? So it sucks the energy out of the person you’re talking to and it’s not about you as not about the person you know and you can’t relate. And I can share, of course they’re 10 20 things to say to them, but don’t pick that one.

Adam: (09:29)
Yeah, please do. Yeah. So first lesson is the stories about them. Stay with them in their story, not in your side story. And then what, what do we say to them?

Dana: (09:40)
So many things to say. I’m actually going to pull out my article and read some of them. Is that the best ones to say first? Is there anything you need? Certainly. I’m sorry. Is fine. Although some of us don’t want that pity party though. The drama. So just a gentle out wow, I’m sorry. Is there anything you need? And you may be a total stranger. Is there a, you need some water right now. Is there anything you need? Other good ones are, would you like to talk about it? Do you like to share more? And how are you feeling today? So just to stay with them, I’ve a, maybe they’re nauseous, maybe they need to take a seat or they’re fine. Um, so it’s, it’s really how is your recovery going? Or where are you in, in the treatment? Where are you on the journey? Showing interest, but asking a question that they may want to share. So this is really staying in the moment if you’re a friend, of course, is what can I do for you?

Adam: (10:42)
Yeah. Well, and I liked what you said a minute ago where you mentioned that you can’t understand what they’re going through and even someone else that, that has had cancer had their different stories. Right? So as a patient, do you have any, you mentioned that your sister and yourself, like you both would speak up at some point, you know. To guard your own emotional health. And so what tips do you have for someone that needs to do that?

Dana: (11:10)
First, it’s hard. But I recommend it for your own wellbeing. So as cancer patients, so you don’t walk away saying, Oh I am just so sad. I shared that with them and I feel worse than ever. And I heard this awful story. So what I do, I, I’m on a somewhat alert cause I know the first thing is that someone is going to offer their story, even a total stranger. So when they start, I am saying, I don’t mean to be rude. What? I really can’t hear another story. I’ve got enough of my own. So I do this shoulders thing. I’ve got enough on my shoulders. I appreciate what you’re about to tell me, but I really don’t want to hear any story. Some people will say, no, no, no, no, it has a happy ending. I said, I still don’t want to hear it. And they may walk away feeling I was rude, but I am truncating it and I try to explain why, but I don’t spend too much energy that they can handle it or they can’t.

Dana: (12:11)
But I’m protecting myself so it’s tough. I do recommend everyone practice it, try it. And at least you know you’re taking care of yourself because you’ve got your own stuff. We need to put this barrier up. If I can, I’ll give you other examples that people, it should not say that I also have to put the same barrier. So it’s not just because I know they’re launching into a story and it’s the word. Should friends, family, loved ones and total strangers want to say, you should go to this place in the middle of the Amazon and have their treatment. You should take this, you should take that. You should eat more tofu. You shouldn’t have as much stress. People are not, unless they all are oncologists. And even if they are, I’m listening to my team of doctors. I’m choosing if I go and get acupuncture or holistic and I’m doing all of that because it’s my choice.

Dana: (13:09)
I’m doing my research and every cancer is different. Even every stage four breast cancer is different. Right? And don’t send them books. Um, and I’ve gotten a book on death and dying and I couldn’t wait to get that out into the trash and out of my environment. And that was a friend thinking they did a helpful thing for me. Let me just rattle off a few other don’ts cause I think people learn from the “don’ts” but I want to give more “do’s. “What are your odds?” “What stage are you in?” “How long did they say you have?” None of those questions are any of your business nor helpful. “Which breast did you lose?” “Did you take off one or two?” Not their business. And we need to be advocates and either interrupt as I shared, which is pretty hard to do or walk away. Nice meeting you. Got to go.

Adam: (14:12)
And I think you’ve mentioned this like it sounds like you need to give yourself permission to protect yourself. And that means maybe breaking some social norms. And that’s okay.

Dana: (14:22)
So Adam, my favorite word in life post cancer, particularly stage four, facing the mortality is choices. We have choices and I have chosen which friends are truly the ones that I want to come hang out while I’m flat out on the sofa and just sit with me and which friends bring me down and are negative or overly dramatic or make it all about them. So make choices as to the environments, whether you, if you like candles, like candles, if that friend is not a or relative, sometimes are not making you feel warm and cozy, then make those choices and move away. Spend less time, less time there. That’s right.

Dana: (15:04)
Are there any other ways that people can help or show you that they care? Asking the person and Adam, I get a lot of calls as a spokesperson is Hey, my friend was just diagnosed. What can I do for them? I don’t know cause I don’t know what they need. So even, and so what I do is ask them. Yeah. Now what you can do for sure is stay in touch, keep those drips coming. So what everyone can do is even if they close down, cause some people just like to go and get very quiet and remote, don’t think they don’t want to hear from you. Right. And I don’t mean Facebook likes either. I mean sending greeting cards, just pop them in the mail. And so while I’m thinking about you a voicemail and they may not return the voicemail, but you left it, just say I’m thinking about you and always end it.

Dana: (15:55)
If there’s anything you need, please let me know. You can always call a sibling, a mother, a sister, a partner on, can you please share with me if there’s anything I can send or do? Yeah. So the best way is to ask naturally if they’re doing any fundraising as a cancer survivor. And they ask, please donate to my cause, my hospital. Any amount that you can give, they feel the love of you joining them in their new cause. Um, we weren’t, we weren’t asked for this. We weren’t picked to be a spokesperson, but if someone is making an effort to help do cancer research, like a Susan G Komen fundraiser that I do every year, then drop, drop whenever you can in there to help them. It warms their heart.

Adam: (16:41)
Yeah. That’s great. That’s great. And my last question, how has Susan G Komen been a part of your breast cancer journey?

Dana: (16:48)
Oh, tremendous. Since the beginning of my journey back in 2002. Number one, it’s a go to site for me for information, for the latest trends for where they’re helping others, but also just the services they provide to us in our local communities. Taking advantage of those. I love the community. For example, I’m active on our Facebook group today for any breast cancer survivors on Susan G Komen. I’m just as many women, our word is an open book. So any of you listening, just join that and ask anything. None of us are oncologists. So we are all not, not going to tell you you should do this and should do that, but we will give our own experiences freely and you’ll feel the warm hug from all of us. So Susan G Komen is every year is a big part of my life on, on an ongoing basis. I love their leadership and their shift to caring equally about so many facets of cancer, including stage four but also the early detection because we don’t want people to be living the life I’m living.

Dana: (17:55)
Meaning, you know, living under this ball and chain of stage four. We want stages one, two, three. I just go into remission and, and live on forever as, as I plan on doing anyway. So love the effort to help the metastatic side. But all cancers need so much research and dollars and treatment protocols, uh, to evolve cause it’s, it’s still growing and it’s still mission-critical that we find better solutions.

Adam: (18:26)
That’s right. That’s right. T. hat’s great. Well, Dana, this has been really amazing, you’re an inspiration. Uh, and honestly you’ve helped me to think about a lot of this in a new way and I think probably our audience in a new way as well. So I really, really appreciate that. Thank you.

Dana: (18:40)
Thank you to everybody who’s joined us today. And I’m on the Facebook group at Susan G Komen and join us there. Ask me anything.


Support for Real Pink comes from Genentech, a member of the Roche Group, who pursues groundbreaking science to discover and develop medicines for people with breast cancer. Learn more at gene.com.

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