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Breast Cancer and Reconstruction With Terri Coutee

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Published on April 7, 2020

Key Takeaways

  • Patients facing a mastectomy should discuss breast reconstruction with their surgeon, whether they plan to do it or not—an informed patient is an empowered patient.
  • DIEP flap breast reconstruction uses a patient’s own tissue to rebuild the breast without compromising any muscles and should be performed by a board-certified microsurgeon.
  • Be willing to “hit the pause button” and take time to research your options before making any major decisions about your health and body.

“Take time to do the research,” says Terri Coutee, Founder and Director of DiepCFoundation.org. Terri is a two-time breast cancer survivor and passionate advocate who educates breast cancer patients about their reconstruction options and encourages all cancer patients to make informed decisions about their health.

Terri founded DiepCFoundation.org after her own DIEP flap reconstruction surgery in 2014. A lifelong educator, Terri now helps others navigate their own breast cancer journeys.

In this video, she discusses breast reconstruction, finding a qualified surgeon, shared decision-making, the importance of “hitting the pause button” and more. Watch now to learn from a patient advocate. 

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Transcript | Breast Cancer and Reconstruction With Terri Coutee

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Suzanne Mooney:

Hello and welcome to Patient Power. I'm Suzanne Mooney coming to you from Chicago, Illinois. Today I'm speaking with Terri Coutee, the Founder and Director of the DiepCfoundation, which is a nonprofit that educates and empowers breast cancer patients. Terri is joining us from Seattle, Washington. Terri, thank you so much for being here today.

Terri Coutee:

It's a pleasure to be here, Suzanne. Thank you so much for the Patient Power network for inviting me today.

Suzanne Mooney:

So, Terri, you were diagnosed with breast cancer when you were 47. You had two lumpectomies, chemo, radiation and five years of tamoxifen (Nolvadex or Soltamox) And then life went on, and you thought breast cancer was behind you until a routine mammogram 12 years after that initial diagnosis led to a second breast cancer diagnosis and a double mastectomy. Can you talk to me about that time in your life and some of the decisions you had to make about your health and your body and how that led to founding a non-profit? 

Terri Coutee:

Sure, I can. So talking about the second diagnosis, as you mentioned, I had a double mastectomy when I was living in Arizona at the time. And I was given all of my options for breast reconstruction by my breast surgeon, because the day I went in to confirm if I had to have a double mastectomy or not, I wasn't even prepared to talk about breast reconstruction. But my breast surgeon was a well-connected, well-informed, highly skilled surgeon, so she gave me all of those options. I feel very strongly that women and men who are facing a mastectomy, that part of the conversation with their breast surgeon, with their oncologist, should include information about breast reconstruction, whether they want to do it or not, I think the information should be offered. Because some women choose not to have reconstruction, some women choose implant reconstruction, and some women choose to use their own tissue—which I did, which is called DIEP flap, deep inferior epigastric perforators, and that's using the tummy tissue.

The perforators are the blood vessels that are underneath the skin and the tissue, the beauty of DIEP flap is they do not use the rectus abdominis muscle, they don't compromise any of the muscle tissue. And so it's now called the gold standard and my breast surgeon even called it that at the time she offered me all of my options. It's now called the gold standard in breast reconstruction, because it does not sacrifice that muscle. So again, I think it's very important for patients to have that conversation woven into their discussion when they're told they're facing a mastectomy. So after I had my double mastectomy, because there wasn't a surgeon in the town that I was in at the time that I wanted to have the DIEP flap done, I started researching. And it was a long process, I looked all over the country because if you choose to have autologous, that means using your own skin. If you choose to have autologous breast reconstruction like I did, you have to go to a subspecialty, a plastic surgery, and that's called microsurgery.

Because when surgeons are tying together blood vessels and when they're teasing those blood vessels out of tissue to preserve the muscle, it requires special training. And they have to look under very high-powered microscopes to find these vessels. But then once the tissue, it comes from the belly area, once it is disconnected and transplanted, then to the breast area, they have to tie those blood vessels together, so that requires microsurgery. There are a lot of plastic surgeons across the country. You can find one in most large cities, even in some smaller cities, but to find a microsurgeon there are fewer of those. So that's the part that took a lot of research for me. I felt it was very important, and I emphasize this to women who decide they want to use their own tissue. It's very important to ask certain questions about the skill level of a microsurgeon. You want to know how many procedures they have done. It is very important for them to have had excellent training.

There are some microsurgeons that are doing fellowships, there are microsurgeons that don't do fellowships, that train very heavily in their plastic surgery program to do microsurgery. So either one of those cases, it's important to know about their training. So I looked at the training of my surgeon, I looked at the number of surgeries that they did. I also asked if they used a colleague to work with them, in other words, "Are they working with physician's assistants in the OR?" Or more importantly to me, "Are they working with another microsurgeon?" So, all of those things were criterion for me, but I also share that with other patients that those are questions they should be asking.

Suzanne Mooney:

So did you do a lot of research online and then narrow it down to a couple of microsurgeons and then ask those questions? Or at what point in the process were you asking them about who's in the operating room and getting into the more detailed qualifications?

Terri Coutee:

Great question. I did look online, fortunately the groups that I looked at, the one that I chose specifically, I should say, fortunately they have a very extensive website that specifically states on there—there are two surgeons, they write a lot of blogs and so they specifically stated on there, "There are two surgeons that work in the OR at all times for each patient who chooses to do autologous reconstruction. It's not necessary if you have implant-based reconstruction, one surgeon and a plastic surgeon can do that alone." So I looked online, but the group also that I went to, and I think in some ways Suzanne, this was a springboard to the work that I'm currently doing. They have a patient program there ,and I know there are other breast surgeons, I know there are other plastic surgeons and microsurgeons who have similar programs across the country, almost a buddy system if you will. And so they have other patients who have been to that facility that you can talk to about their experience.

So fast-forward, seven months later after my double mastectomy, I had my successful breast reconstruction. And so all of that research that I had done, I started getting more phone calls from women asking about my own experience. And because I had done research, I was in my master's program when I was diagnosed the second time and I really enjoyed the research process. And I started doing research and found out that less than 25 percent of women and men are actually given all of their options of breast reconstruction. I make a simple analogy, and I think to myself sometimes, "When you talk to your children when they leave high school, at least in the United States, they can go onto a trade school, they can go onto college, they can go onto a skill or job of their choosing, but if you don't talk to them about all of those, how do they make a decision?"

And so, I felt the same way about breast reconstruction after being diagnosed with breast cancer and having a mastectomy. I felt that women and men needed to have the information to make that informed decision. I started out writing a blog, and a year later I opened my foundation. And really it was to give women and men the information they need and empower them to make that decision should they decide to move forward with breast reconstruction.

Suzanne Mooney:

And do you think the DIEP flap procedure is for everyone, or do you think that's just one option that people should consider?

Terri Coutee:

I think that's one option people should consider. I don't think it's for everyone, and, in fact, there are very few cases where it can't be considered. In the case of a woman who has had a prior tummy tuck or abdominal, I think they call it abdominoplasty, I'm not sure but I know it's a tummy tuck procedure for aesthetics. If that has been done, then DIEP flap is out, but the options for breast reconstruction, to answer your question are really three when it comes right down to it. You can have implant-based reconstruction, you can have autologous reconstruction, and there are a number of parts from body that you can take tissue—the tummy is the most common.

And then some women do a combination of autologous and implant reconstruction, and that's done sometimes to increase volume or to help with projection. So it just really depends, and it really is based on personal preference and lifestyle for each individual patient. But I firmly believe all of those options and the discussion needs to take place. Unfortunately, Suzanne, what I hear way too often, is that women will go into a plastic surgeon, and they feel like they've been talked into implants, or they've been talked into a certain procedure. And many times, it's just because that's what the plastic surgeon is comfortable with. And they may be a fine plastic surgeon. But if a woman wants all of her options, and she walks out of the office of her plastic surgeon and feels like they haven't been part of the decision-making process, then that's where it becomes a little bit challenging for the patient.

Suzanne Mooney:

So just to recap what I'm hearing. So if someone is looking into reconstruction or any sort of treatment, they need to ask questions, they need to see a specialist, they need to do their own research. And then I know that you also have an online support group as well, and so that's something else I'm guessing you would recommend. Hopping online or even in-person and connecting with other people who have either been through what you're going through and can offer advice or are currently going through what you're going through, but connecting with other people who can understand the situation that you're in.

Terri Coutee:

Yes, connecting with others can be very valuable. However, like “Dr. Google” or searching on Google, I think you have to be careful. There are a number of different support groups online and yes, I do have one. Thank you for mentioning that. It's a closed support group for breast cancer patients who are thinking about moving beyond the mastectomy, and they're doing some research about all the different options for breast reconstruction. But it also includes the process of going through surgery, planning, healing, finding a plastic surgeon, it's pretty all-encompassing. The thing that I would caution about online Facebook groups or any social media platform, make sure that it's backed up with evidence-based research, because misinformation can lead to poor outcomes for the patient. I'll leave it at that. I think you know what I'm talking about. I think we just have to be cautious about which groups we join. You can always join them, dip your toes in the water, see how it feels to you, ask questions, if it doesn't feel right, you can always leave the group.

Suzanne Mooney:

So taking into consideration what your doctor recommends, what you're hearing from support groups that you have faith and interest in, doing your own research as well and combining all of those things to make the decision that is right for you. So not just taking the first recommendation from a doctor and going down that path, because that's what that doctor specializes in. But you're recommending educating yourself, doing research, and then being in the driver's seat and making the decision that's right for you.

Terri Coutee:

That sums it up really well, Suzanne. And I think once you have done that, the next step in that process, whether it's in your breast cancer care, with your oncologist, your radiologist, your breast surgeon, or whether it's with your plastic surgeon or microsurgeon. There's a process, once you have gathered all the information and you're ready to move forward with a consult. Once you've done your online research, once you have talked to some other patients and once you know what your diagnosis is and you have all that gathered together, there's a process in your consult called shared decision-making, and you mentioned that, you mentioned making the decision. The process of shared decision-making is when you go to your consult with that information and you sit with your healthcare provider, whether it's for breast cancer or breast reconstruction, and you have a conversation that includes the expertise of your healthcare provider—no matter who it is in your breast cancer journey or breast reconstruction journey and you listen to their expertise. Then they put the pause button on, and they start asking you questions about your personal preferences.

"What is it that you are expecting out of your treatment? What is your lifestyle, what kind of support do you have at home for treatment and healing?" And you have that open conversation, and then you both bring those two thoughts, discussion together to make the decision that is the most comfortable for you.

Suzanne Mooney:

Terri, thank you so much for your time today. Before we wrap up, what do you want to leave our audience with? Especially if someone is watching this and maybe they're at the start of that journey, they know that they're going to be facing this very soon, what would you want them to know? What do you want to say to them?

Terri Coutee:

I think the best thing to do is just to take time to do the research. Often people say that breast cancer is an emotional emergency, there are oftentimes you have to move quickly, and I don't want to dismiss that at all. But oftentimes, and this is certainly a question to ask your healthcare provider, oftentimes, you can hit the pause button and do your research and ask the questions, talk to others, and you may have to go to one or two healthcare providers to feel comfortable if that discussion that you had with them isn't feeling right for you. It's always important to treat the breast cancer first, absolutely 100 percent. So talk to your healthcare provider about the timing of your treatments, but again, take the time to do your research and look for various tools that can help you, various people that can help you in that decision-making process.

Suzanne Mooney:

I love that. I love hit the pause button. So if you're watching from home, remember that, hit the pause button. This is a big decision no matter what route you decide to go. So see a specialist, ask questions, do your research and make sure you're making the decision that feels right to you. Terri, thank you so much for your time today, I really appreciate you being here and thank you for everything that you're doing as a patient advocate and all the education and empowerment. I know you travel all over the country to conferences, and you have videos on your website and your blog, so just thank you for everything you're doing to make the world a better place.

Terri Coutee:

You're very welcome. And I tell people frequently, I keep doing it from the inspiration of every woman and every healthcare provider I meet that is driving, trying to make this a better opportunity for patients. So I'm inspired daily by that.

Suzanne Mooney:

Well, thank you for being here, and those of you at home, thank you for watching. I'm Suzanne Mooney from Patient Power. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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