Transcription:
Becoming an Empowered Patient

Melanie Cole (Host): The American Cancer Society estimates the lifetime risk of a woman developing breast cancer is about 13% or almost one in eight. But what happens when you find out your odds are one in four? Welcome to Back to Health, your source for the latest in health, wellness, and medical care, keeping you informed, so you can make informed healthcare choices for yourself and your whole family. Back to Health features, conversations about trending health topics and medical breakthroughs from our team of world-renowned physicians at Weill Cornell Medicine.

I'm Melanie Cole. And I invite you to join us in this patient story about the importance of breast cancer awareness. Joining me in this panel is Dr. Lisa Newman. She's the Chief of the Section of Breast Surgery at New York Presbyterian Weill Cornell Medical Center and Weill Cornell Medicine and Marina Hoffmann Norville. She's a patient of Dr. Newman's. Ladies, I'm so glad to have you with us today. And this you know, a topic I think that we all need to discuss and hear about. And certainly not just in October, right? This is something that we need to think about. So Marina, I just want to start with you. Can you tell us your story and how you came to meet Dr. Newman?

Marina Hoffmann Norville (Guest): Of course. Thanks for having me, Melanie. I guess my story begins with my mother who died of metastatic breast cancer in her liver in September, 2020. And it was only six days from her diagnosis of breast cancer metastasis to her death. And she had been diagnosed with stage 1a breast cancer in 2017 and the metastasis shocked everyone including the doctors.

So it was whiplash to lose her so quickly. And my gut reaction was to chop off my own breasts, but rather than act on impulse, I did genetic testing and found that I had an approximate 25% chance of getting breast cancer. And so I was officially labeled as high risk. So, I met with a number of doctors, at Weill Cornell and those discussions led me to Dr. Newman. I met with Dr. Newman in May of 2021, and she was extremely thorough with presenting options, weighing the risks and advantages, and she pressure tested how resolute I was in my decision.

Host: Wow, thank you for sharing that story. So, when you say you got genetic testing, tell us what that found, because I know a lot of women, I'm an Ashkenazi Jew, so I want to get the BRCA test. I'm a little afraid. Tell me a little bit about what that was like for you.

Marina: Well, I guess, you know, after seeing my mother die from breast cancer so quickly, I went to my internist at Weill Cornell and said how I wanted to get a mastectomy. My doctor recommended that I get genetic testing done to see what the results would be. So, I immediately went that route. I went into this decision wanting to know all the details and facts and genetic testing certainly helped arm me with that information.

I know there's a lot of discussion about BRCA, you know, the BRCA gene and other genes. I don't have any of those suspect genes or any of those high-risk genes. My risk is high because of genetic factors, but also just, the way my life was in terms of having my children after age 36 and having already a biopsy. So, I know there's such a focus on specific genes per se, but I think, genetic testing can give you a wholesome view of how your risk is and arm you with those details to make the right decision for yourself.

Host: Dr. Newman, can you speak then a little bit about genetic testing? Expand a little how that can empower women to be their own advocates and make these kinds of decisions.

Lisa Newman, MD, MPH, FACS, FASCO (Guest): Thank you so much, Melanie. So, that is a very important question. And I have to say right at the outset, however, that Marina is a role model for women in terms of the way she approached her own situation and evaluation of her breast cancer risk very, very methodically, thoughtfully, and comprehensively.

This is what's really important. Women have to get as much information as they can about their individualized risk so that they can make an informed decision after they review the various options. Genetic testing is one piece of the puzzle. As Marina correctly stated, there are number of lifestyle risk factors that can influence an individual's breast cancer risk, but genetic testing and looking for inherited predisposition is one very important, additional clue. We can do genetic testing to evaluate for hereditary predisposition or hereditary susceptibility for breast cancer, by doing DNA evaluation from a saliva specimen or from a blood specimen.

And there are a number of different genes that we can evaluate. The most commonly associated genetic abnormalities that increase risk of breast cancer would be mutations in the BRCA1 and BRCA2 genes. And women that have strong family histories of breast cancer are encouraged to undergo genetic testing. Women that have history of not only breast, but ovarian cancer in the family would be encouraged to get genetic testing. Women that are diagnosed themselves with breast cancer, but with certain types of breast cancers, such as one form known as triple negative breast cancer, they are also encouraged to have genetic testing.

Ashkenazi Jewish individuals are recommended as part of their primary care to consider genetic testing for the BRCA1 and BRCA2 as soon as they reach age 30, because there is an especially high frequency, high incidence of having certain BRCA mutations in Askenazi Jewish individuals. So, the genetic testing can inform a woman in understanding how high her risk of breast cancer actually is.

It's not the only thing that we look for. And there are certainly some genetic factors that we simply haven't identified yet. And so women can have completely negative genetic testing and still be at increased risk for breast cancer by virtue of their family history or some of the lifestyle issues that Marina discussed, or by virtue of looking at their mammograms. There are certain patterns of density on a mammogram that can also identify a woman who is at higher risk for getting breast cancer in the future.

Host: So, Marina, what did you decide to do? And how did you make the decision that you made?

Marina: Well, there was 10 months from when my mother died to when I had the prophylactic mastectomy with Dr. Newman. And during this time I act with urgency and determination to take care of my health. I didn't have any hesitation from my discussions with doctors. You know, I was the one advocating for myself to have a prophylactic mastectomy.

I met with about nine different doctors and many of them recommended to me to have chemotherapy prevention. It's a low dose pill call tamoxifin and doing active surveillance, which means, an MRI, a mammogram, a sonogram every six to 12 months. This route would bring my risk down to approximately 12%.

So, it would cut it in half. I'm a healthy, active 46 year old woman and a mother of two young children. And so I, made the decision that I didn't want to do years of drugs, despite studies showing that women do tolerate it well. I held my ground and chose the surgery route for me, which brought my risk down to approximately 3%.

And my driving motivation was how I could drastically reduce my risk. So, I did a prophylactic bilateral mastectomy on July 2nd, 2021. And the genetic testing helped facilitate that big decision. I had gotten various opinions and done a lot of research. But I took comfort in the fact of doing this and going flat before any cancer diagnosis happened and very much embraced being proactive about my health.

I didn't want my children to experience how I lost my own mother. And I did this preventative mastectomy for myself and my family with my goal being peace of mind that I was drastically reducing my breast cancer risk.

Host: Wow, this is quite a story. And so really inspiring for women to hear. Dr. Newman, how can we benefit more by talking about these things and stories like Marina's? For women like me that are worried about our risk, but hesitant to discuss it and tell us just a little bit, you mentioned lifestyle, there are different surgeries available. Marina obviously had the mastectomy. Just speak a little bit about that whole process. And when you discuss this with women, what does that discussion look like?

Dr. Newman: So, it is a very intense discussion and Marina actually summarized beautifully many of the options that are available to women in terms of mitigating breast cancer risk. First of all, it's important to be aware of certain lifestyles that can increase or decrease breast cancer risk. It's important to exercise regularly and have a balanced diet with lots of fresh fruits and vegetables, minimize alcohol intake.

These are definitely lifestyle factors that can affect a woman's breast cancer risk. For premenopausal women, if you're having babies, it's a good idea to nurse those babies because lactation can lower breast cancer. We mentioned genetic testing and women that have an increased risk for getting ovarian cancer through genetic testing will often plan on having their ovaries removed. And removing the ovaries in premenopausal women will also lower breast cancer risk. Now the bilateral prophylactic or bilateral prevention mastectomy that Marina described is indeed the most aggressive thing that a woman can do to lower her likelihood of getting breast cancer over the lifetime. But it is important for women to understand as Marina correctly stated that the bilateral prophylactic mastectomy is not a guarantee.

It's the most aggressive thing that you can do to lower breast cancer risk. And we estimate that it lowers that risk by somewhere between 90 and 95%, but you can always have microscopic amounts of breast tissue hiding in the skin after a mastectomy or hiding in the underarm fatty tissue. So it is important for women to continue getting a clinical breast exam with their healthcare provider every year, even if they have had a bilateral mastectomy for prevention of breast cancer. At the other end of the spectrum, what many women will do if they have higher risk for getting breast cancer is to just be very vigilant about their monitoring, which means getting a clinical breast exam every year by a breast specialist, making sure that that their mammogram and ultrasound every year, and also doing a breast MRI or breast magnetic resonance imaging on a yearly basis is another good way to monitor the breast tissue so that if a cancer does develop to make sure that it's detected at an early stage when it's most likely to be treated curatively.

And then there's the other option that Marina mentioned, which is chemo prevention. We do have several different pills that are FDA approved for lowering breast cancer risk, and these medications lower breast cancer risk by about 50%. But they do all have side effects that many women are not willing to accept. And so this is why, the chemo prevention route actually tends to not be very popular.

Host: Marina, can you tell us about your experience at Weill Cornell Medicine and how they helped you with this decision, your experience with Dr. Newman? What in particular stood out about the care you received. Speak to women about what this procedure was like for you, recovery, how you feel now? Kind of give us a whole summary because it's a big step. Many women look at themselves and think of their breasts as their womanhood, but you took this very bold route. Tell us what it was like.

Marina: My experience at Weill Cornell was and continues to be absolutely amazing. And A+ from my internist to geneticists, to OB GYN, to Dr. Newman, my plastic surgeon, they all helped me make a very informed, competent decision. Dr. Newman's phenomenal. Every experience I've had with her has been absolutely stellar.

She is touted as one of the best doctors and for very good reasons. She's extremely knowledgeable, but she also has a such a warm and personable approach and lovely bedside manner. When I first met Dr. Newman, she pushed me on my strong desire to get a mastectomy. It is a drastic route. But I very much appreciated how she looked at my situation from every angle to ensure that we were doing the right thing.

I would say the most positive part of the experience was to have such an experienced, amazing surgeon, as Dr. Newman and I am so grateful to her. My procedure was best case scenario. I had four fantastic female doctors in the operating room. Dr. Newman, Dr. Leslie Cohen, who was my plastic surgeon and two women anesthesiologists.

To have all the doctors be women was awesome and unexpected, but that was a real treat. And my recovery went extremely well. I was in the hospital for one night. My pain was quite minimal and I think that's a testament to having such wonderful surgeons. I felt extremely relieved after my experience. I was so happy to have it done.

And, you know, I took it easy and rested for a few weeks. I only had the drains for one week. So, I think the recovery was best case scenario as well.

Host: Wow. Quite a story. And how do you feel now? And, really, what would you like to tell Dr. Newman?

Marina: I feel great now. I am so happy with my decision to have done a mastectomy. To have the worry of breast cancer drastically reduced as much as possible is an immeasurable relief. And, in terms of what to say to Dr. Newman, thank you from the bottom of my heart. Thank you for being such an amazing, awesome, compassionate presence in my life.

You are a star with the role you play at the hospital, and I'm so grateful to have you as my doctor. You're an inspiring person. You're a trailblazer for surgeons and you are so instrumental with the fight against breast cancer. Thank you for being your phenomenal self. The world is certainly a better place because of you Dr. Newman.

Dr. Newman: Ah, Marina, if I could just jump in and say, thank you, you made my job so easy because of the fact that you were so incredible about getting all of your information and processing it in your own fashion. You did make sure that you took the time to do all of your soul searching. You made sure that you got multiple opinions and you processed everything, just magnificently with maturity, grace, strength, and courage, and that's all any physician can ask for that patients take the information that we have to share with them and process it in their own way. It is a difficult decision to make, but you made your decision with tremendous grace and courage. You made sure that you took our advice in getting multiple opinions. You talked to other people, but you were also cognizant of the fact that your decision had to be based upon your experiences and your feelings, not based upon any other woman's feelings about their breasts or their level of risk.

You did all the right things and, I think that's the reason why you're so satisfied now, because you did your due diligence and you made sure that you had all of the options appropriately laid out for yourself.

Host: This is just absolutely lovely. The way that you two, I can see the relationship and the trust that Marina had in Dr. Newman. I'd like you each to have a final thought for the women that are listening. Marina, what would you tell women that are listening, who are worried about this? Who have been considering a genetic test and even possibly prophylactic care? What would you tell them?

Marina: I would tell them to be your own health advocate. With breast cancer, odds being almost one in eight, it's an example of how we all need to be strong advocates for our own health and wellbeing, especially if there is a family history of cancer. Two, the genetic testing is very powerful. The more information you have, the more you're empowered to make the right decisions for your own health.

Third, I would say that there are other options besides drugs. A prophylactic bilateral mastectomy is certainly a strong and drastic choice, but it is an option besides taking drugs for years. And, it might be an option for people to consider. I'll touch on one other point that you brought up Melanie is that I don't think breasts define femininity.

I mean, going flat shouldn't be seen as a negative choice, but rather presented as one of the options. And it was obviously a personal choice of mine not to get reconstruction. I did the mastectomy, not for cosmetic reasons. I did it for survival, but we can find femininity, certainly in other ways. And, finally I would say that we can benefit by talking more about breast cancer.

What options women have. How to reduce risk, how genetics play a role. And although everything is covered in pink in October from NFL uniforms to pink ribbons on suit jackets, it certainly helps to humanize how women are fighting it. And we can show there are choices that empower women. So I'm very grateful to Dr. Newman and you Melanie, and everyone that helped to do this podcast because you're shining a light on what women can do. And I think that helps so very much.

Host: Well, I certainly thank you, Marina. And you know, when I said that, I wasn't saying that. It's just some women sometimes feel that way, but I agree with you. And I think that it was not only very brave but also wonderful that you came on here and you're speaking to women like me that are really considering all of these kinds of options. And Dr. Newman as Marina so beautifully said about being our own best health advocate. It's something I advocate on all of my podcasts. What would you like your final words to be to the women out there that are worried, that are concerned about these things, that want to get our research in, and do our due diligence, but to be our own best health advocate?

Dr. Newman: Thank you so much, Melanie and I too applaud Marina for her bravery and telling her story so frankly, and so beautifully. I think that she is truly an inspiration and a role model for women, based upon the way that she handled her risk, evaluating all of her options. And she's very clearly expressed in this podcast that women do have options if they are at high risk for getting breast cancer.

But step one is to evaluate that risk. So, talk to your healthcare provider, find out if you do have features increasing your risk of getting breast cancer and thoroughly understand your options in managing that risk. You may choose to go the route that Marina chose, if your risk is high enough. And if the alternatives to bilateral mastectomy are not acceptable to you.

On the other hand, you may choose to follow one of the other options, but get all of your information. And process your level of risk and then figure out what feels like the best strategy. For women that are not at increased risk for getting breast cancer, women that are at what we call average risk for getting breast cancer; it's still very important to be aware of breast cancer development and how to protect yourself from the life-threatening aspects of breast cancer, which means early detection. And Melanie, as you stated in the beginning, approximately one in eight American women will get breast cancer in their lifetime.

So, that means that we all have to be vigilant. For average risk women, it's important to get that yearly mammogram starting at age 40. Make sure you are aware of the danger signs of breast cancer, such as a new lump in the breast, lump in the underarm, bloody nipple discharge, changes in the skin appearance of the breast, changes in the nipple appearance on the breast, all of these types of so-called danger signs or symptoms that you should seek medical attention for promptly.

Don't be alarmed or panicky if any of those symptoms develop because they can all have benign harmless causes, but you need to get them checked out so that if there is a problem, it's diagnosed early, so you can take care of it.

Host: Great information, ladies. Thank you so much for joining us today for Marina, for sharing your story and Dr. Newman, you're a great guest as always with such awesome advice. Thank you both again. And Weill Cornell Medicine continues to see our patients in person, as well as through video visits. And you can be confident of the safety of your appointments at Weill Cornell Medicine.

That concludes today's episode of Back to Health. We'd like to invite our listeners to download, subscribe, rate and review Back to Health on Apple podcast, Spotify and Google podcast. For more health tips, please visit weillcornell.org and search podcasts. And parents don't forget to check out our Kids Health Cast. I'm Melanie Cole.

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