Advice From Doctors Who Had Breast Cancer 2024 Webinar
In this candid conversation, Marisa Weiss, MD, Michele Ley, MD, FACS, Pamela Munster, MD, and Rachel Swart, MD, PhD share what they each experienced when they went from the role of healthcare provider to patient.
Despite their medical training, many years of helping patients, and deep knowledge about breast cancer, they too felt their life come to a screeching halt when they were diagnosed.
They spoke honestly about how they managed treatment decisions, returning to work, how the experience changed their interactions with their own patients, what everyone can learn about advocating for yourself, and much more. Their hope is that by sharing their stories, they can help others coping with the same challenges, and empower everyone affected by breast cancer.
Featured speakers:
Marisa Weiss, MD
Chief Medical Officer, Breastcancer.org
Michele Ley, MD, FACS
Board-Certified Breast Surgical Oncologist and Founder, Tucson Breast Health Specialists
Pamela Munster, MD
Director, Early Phase Clinical Trials Unit, Co-leader of the Center for BRCA Research, and Co-Leader, Molecular Oncology Program, University of California San Francisco
Rachel Swart, MD, PhD
Medical Oncology and Hematology, Arizona Oncology
Q: How do you deal with Hormone Blocker hell? The painful joints have been bad but I have had 2 hip replacements this year and just went back to work and had a meniscus tear yesterday so yet another joint replacement since January.
A from Jamie DePolo: Brenda, I'm sorry you're dealing with this. Cymbalta and other medicines have been shown to help. Exercise and acupuncture also have been shown to help with AI joint pain.
Q: 5 years out, stage IIIB ER/PR+, no BRCA diagnosed at 33. I'm extremely tired of being dismissed as a premenopausal woman of any hope for HRT once I'm done with tamoxifen/ menopausal. My doctor doesn't help with most of my current side effects, and knowing they're just going to get worse with no hope for assistance is insanely depressing. 50% risk of dementia due to family history is way more scary than another BC diagnosis. I'm seeing in many places that HRT is possible after BC but everyone keeps referencing the WHI study and doesn't seem very open to allowing me to make an informed decision for my own life. Aren't more studies coming out to support this, and where is a good place to find them?
A from Jamie DePolo: Definitely check out our podcast with Dr. Kristin Rojas, a breast surgeon and gynecologist. She also has a very informative Instagram account: music_sexaftercancer
Q: Thanks for mentioning about calling the image "ugly". I think that it is really important, we radiologists should stop using the word "ugly" for disease signs, it is completely not scientific, and not an appropriate term to use. Maybe a topic to be included as CME.
A from Lisa Kline: Great suggestion for a CME topic. Thanks.
Q: Thank you for this informative webinar. I’ve gone from stage IB ER/PR-HER2+ with lumpectomy/chemo/radiation and then within 6 months to same pathology MBC. Started new chemo Enhertu — thoughts on this type of chemo?
A from Jamie DePolo: Here is our page on Enhertu. And this study was just presented at ASCO.
Q: What kind of complications are possible with reconstruction (I’m going to have a mastectomy with implants).
A from Jamie DePolo: Here is our page on implant reconstruction risks and complications.
Q: Ideas for managing hand foot syndrome caused by capecitabine.
A from Jamie DePolo: Hi Blanche. Thanks for joining us. See this research.
Q: Hi Doctors, Thanks for doing this. I’m 51 and was diagnosed with triple positive IDC, so immediately stopped BHRT, which was the only thing that helped my GSM (genitourinary symptoms of menopause). My lady bits are non-functioning (walls thinning, lips have literally shrunk). What can do I now besides the occasional DHEA my onc hematologist told me I can use sparingly? I feel like a eunuch and only 2 treatments in on Kadcyla. Please help!!!
A from Jamie DePolo: Hi Vida. I'm sorry you're having these side effects. This podcast with Dr. Kristin Rojas will be very helpful for you.
Q: Does breast cancer spread in the matter of a few months? What sizes of tumors indicate the different stages?
A from Jamie DePolo: How quickly breast cancer spreads — if it spreads — depends on the characteristics of the cancer. See this page for info on stages.
Q: Dr. Swart, what are some of your suggestions to minimize the impact of AI, specifically Anastrozole/Arimidex? I have received little advice from my oncologist regarding this. I had a full hysterectomy as well as bilateral mastectomy. I am 53, workout regularly, and try to watch my diet closely. Any advice would be wonderful as I navigate this relatively new journey (10 mos.) into AI treatment. Thank you.
A from Dr. Swart: I am still working on my plan as well. It sounds like you are doing all of the right things. I would recommend being kind to yourself and I am trying to work more on gratitude to bring in more positivity. We often are our biggest critics.
Q: My oncologist is not even willing to entertain functional/integrative medicine approaches to breast cancer in conjunction with chemo, radiation, surgery, etc. i.e., the Metabolic Approach To Cancer by Nasha Winters. I am a nurse so I have had to research and integrate these things on my own. Why do so many oncologists rely on just chemo, radiation, surgery, etc. rather than focusing on the body as a terrain. I work hard on nutrition, sleep, exercise, decreasing stress and staying close to my spiritual and social support networks.
A from Jamie DePolo: I'm sorry you're dealing with this. We have this info, as well as this info on getting a second opinion.
Q: Would you ever consider continuing to take an AI if the BCI determines that it wouldn’t be helpful?
A from Dr. Swart: If BCI is low, then I do not recommend doing an additional 5 years of AI therapy.
Q: What is your collective best advice when going through double breast reconstruction? What should be expected, anticipated, and the timing for recovery (getting back to living)?
A from Jamie DePolo: It depends on the type of reconstruction you have. See this section on our site.
Q: If you have MBC and are stable x 1 year is there any reason to be looking at clinical trials?
A from Dr. Munster: It is always helpful to look for trials even before you need them.
Q: What are these doctors’ thoughts on use of vaginal estrogen for GSM following receptor-positive cancer?
A from Jamie DePolo: Most doctors recommend it. Dr. Kristin Rojas is a breast surgeon and gynecologist. See this podcast.
Q: Is Duloxetine an option in addressing joint pain due to aromatase inhibitors? Thank you for doing this webinar!
A from Jamie DePolo: Cymbalta has been shown to help. Exercise and acupuncture also have been shown to help.
Q: Whenever someone gets a chance, if they have anything to say, I'm curious about your thoughts about Oncotype DX Score tests? I'm not sure I will be covered with Medicaid so I'm hoping to find out how much it is out of pocket and if it will help me decide on my treatment plan.
A from Dr. Swart: Oncotype Dx testing is standard of care for ER+ breast cancer adjuvant therapy management. The test results are validated and help us make important treatment decisions. Medicare/Medicaid should pay for this.
Q: I’m on Ibrance and Letrozole. How does this affect me?
A from Jamie DePolo: Our pages on Ibrance and Femara have info on side effects
Q: How do you/did you fight exhaustion? Tiredness? Sleepless nights?
A from Dr. Swart: Regular exercise routine. Stress management helps. But some nights are more challenging than others. A consistent bedtime routine is helpful.
Q: What are your thoughts on consuming alcohol? I haven’t had any since diagnosis in 2022 but was told it was ok to have a glass of wine on special occasions.
A from Jamie DePolo: Research shows that drinking any amount of alcohol increases the risk of a number of cancers. But like anything, you have to weigh the benefits — socializing, taste, celebrating — with the risk.
Q: Recently discovered a dealcoholized Sauvignon Blanc. It is a New Zealand "wine" by Giesen.
A from Jamie DePolo: There are so many non-alcoholic beverages coming out!
Q: Thanks to all the doctors in this seminar! I will greatly appreciate all the important things we need to do to prevent recurrence.
A from Jamie DePolo: Thank you for joining us. Here’s some information from Breastcancer.org on breast cancer recurrence risk.
Q: Is there a preference for Dr. (Male/Female)? And is ER receptor ER positive HER 2 negative considered manageable? Stage I
A from Jamie DePolo: Thanks for joining us, Cheryl. The choice of doctor is what you feel comfortable with. There are many treatments for estrogen receptor-positive disease.
Q: Are there any potential advances for the side effects of AIs?
A from Jamie DePolo: Thanks for joining us! This page has some info on side effects.
Q: Thank you for hosting this webinar! How effective is radiation therapy for micrometastases on one sentinel lymph node? This would be in addition to chemotherapy. My concern is mainly overtreatment and dealing with the horrifying side effects of the numbers are not that significant
A from Jamie DePolo: Thanks for joining us! This study has some good info.
Q: Pre menopause patients take tamoxifen for a few years, however when change to post menopause, patients switch to AI medication. Is this a standard practice? Can post menopause patients stay on tamoxifen?
A from Jamie DePolo: Thanks for joining us! Yes, post-menopausal women can take tamoxifen, but aromatase inhibitors have been shown to be more effective.
Q: It would be great if all patients were offered supportive care, including things like referral to integrative care and/or functional medicine, in order to deal with side effects and collateral damage from our treatments. This is especially needed in the metastatic population. How can we achieve this goal?
A from Jamie DePolo: Hi Kelly! Totally agree. I'll pass along to Marisa.
Q: Surgery two weeks from today — how have others decided single mastectomy vs bilateral? I would like to have a bilateral although cancer has only been found in right breast. Sister and mother have both had breast cancer, and I am trying to figure out how to convince my oncology surgeon to proceed with bilateral. Thank you for all this great information.
A from Jamie DePolo: Thanks for joining us. If you want a double mastectomy and your surgeon disagrees, you may want to get a second opinion.
Q: Is it unreasonable to ask for a double mastectomy 4 years after diagnosis? I was TNBC grade 3 stage IB. I just had a friend who had the same diagnosis one year after me pass away. From when they found her recurrence to when she passed was only 3 months. I am having a hard time with it. I just want them gone now. I had a lumpectomy.
A from Jamie DePolo: Thanks for joining us. No, it's not unreasonable. But definitely check with your doctor and insurance company.
Q: TNBC....chemo, surgery, lumpectomy, radiation 8 months ago completed active treatment. Now experiencing pain in the same breast...shooting, stabbing. All clear 6 month mammo, this is painful. Any suggestions as I meet with onco later this month?
A from Jamie DePolo: Thanks for joining us. Our section on pain has some suggestions.
Q: Is Duloxetine an option in helping joint pain from aromatase inhibitors?
A from Jamie DePolo: Thanks for joining us. Research suggests Cymbalta is effective for AI joint pain.
Q: I was diagnosed 3 months after having my annual mammogram. Now I'm in remission and told annual mammogram is still protocol. Why not mammogram more often?
A from Jamie DePolo: Thanks for joining us. Screening after breast cancer varies. See this page. If you're not comfortable with what your doctor recommends, you may want to ask for a second opinion.
Q: Are there any new treatments for triple negative breast cancer?
A from Jamie DePolo: Thanks for joining us. Studies are looking at combining Opdivo and Imfinzi. We are waiting for those results.
Q: Hi Drs., I am one year post bilateral breast cancer, Stage IA. Left side was ILC, no lymph node involvement, while right side was IDC and DCIS, also Stage Ia. Currently taking anastrozole. Curious about following with MRI after my double mastectomy, particularly my side with the ILC. Would it make sense to have a baseline MRI? I had my mastectomy last year. Thank you.
A from Jamie DePolo: Thanks for joining us. There isn't one answer. It depends on your unique situation. See this page.
Q: I understand doctors are overwhelmed by the demands of insurers, patients and hospital systems. What is the best way to communicate with my doctor, given the very real demands on their time? What should I just take to my GP?
A from Jamie DePolo: Thanks for joining us. This page has some good information.
Q: I would like to know about Ki-67 testing
A from Jamie DePolo: Thanks for joining. Ki-67 testing measures the rate of cell growth.
Q: Is 9 months of Herceptin as good as one year?
A from Jamie DePolo: Thanks for joining. That's a question best answered by your doctor.
Q: Any suggestions on strategies for navigating financial toxicities from going through breast cancer active and maintenance treatments in communities of color?
A from Jamie DePolo: Thanks for joining. We have a whole section on paying for your care. You can also visit a group we work closely with: Triage Cancer.
Q: Do you always have to do chemotherapy? How would you not need to do it?
A from Jamie DePolo: That is a question best answered by your oncologist who knows your situation.
Q: What’s the easiest way to navigate the list of clinical trials? Or which list is the easiest to navigate?
A from Lisa Kline: There are several good resources out there. Here’s information about clinical trials and we have recently launched a search tool for our community members on Breastcancer.org.
Q: How do you know if your tamoxifen is working effectively? Is there a way hormone levels can be checked to see? Idk if this is a valid worry.
A from Jamie DePolo: There are some estrogen level tests. But it's best to talk to your doctor about this.
Q: Diagnosed with TNBC at 35. I was not able to freeze my eggs…what are my chances of having children after the treatment? Is there an increased risk of malformations or syndromes for the embryo?
A from Jamie DePolo: There is a lot of research on fertility after treatment coming out right now. This study was just presented at the ASCO annual meeting.
Q: I need to take an aromatase inhibitor for five years. How can I offset detrimental effects of loss of estrogen to health, brain and bone.
A from Dr. Munster: There is good data that exercise helps with all three.
Q: Thank you for this wonderful presentation! I have read about a U Penn study designed to find and target dormant tumor cells before they cause a recurrence of breast cancer. I live in Arizona and was treated for Stage IIA ER and PR positive IDC last year. Are there are any similar studies going on here in Arizona?
A from Jamie DePolo: This is a podcast with Dr. Angela DeMichiele on the study you're talking about. I'm not sure if there are any Arizona locations. You may want to look for the CLEVER study on clinicaltrials.gov.
Q: I was told that ER positive can come back up to 20 years later. How often does that happen with stage IA?
A from Jamie DePolo: This is the study.
Q: How can I feel secure and being supported my male doc? My surgeon doc is great she's a female, but how to talk to a male doc if you don't have someone with you?
A from Jamie DePolo: This page may be helpful.
Q: Not sure the question on how to choose a doctor was answered. I felt it was more about the doctor choosing her patients. Could you please come back to that? Thank you and appreciate this zoom call!
A from Jamie DePolo: This page on our site has some good info.
Q: Ideas for managing hand foot syndrome caused by capecitabine.
A from Dr. Swart: Vit B6 1 tab daily and urea cream twice daily.
Q: Dr. Swart spoke to anti-estrogen effects on memory. Are there any research articles that address this? TY!
A from Jamie DePolo: We did a podcast on chemo brain that has steps to help manage it.
Q: Can someone discuss the study that tested patients’ bone marrow and how some patients have cancer cells waiting to get reactivated?
A from Jamie DePolo: We did a podcast with Dr. Angela DeMichele on treating dormant cancer cells.
Q: What are the change diet recommendations? Thanks
A from Jamie DePolo: We have a whole section on diet and nutrition.
Q: I’m an 18-year survivor of stage III ILC. My oncologist is great. There is so much “information” out there regarding diet, such as no white sugar, flour, rice, alcohol, chocolate, candy, etc. Thoughts?
A from Jamie DePolo: We have this info on our site as well as these podcasts on diet and exercise.
Q: Do you have support groups specifically for metastatic breast cancer? It is another ball game.
A from Jamie DePolo: Yes, see our community forums, and we have three virtual support groups weekly.
Q: My oncologist and NP have different timeline for when to be seen the year after diagnosis. Oncologist says date of diagnosis and NP says date of surgery. It's a 2 months difference in my situation. How do I resolve this? Do I switch oncologists and if so should I stick with the same care center or look for another care center?
A from Jamie DePolo: You may want to get a second opinion.
Q: I’m a physician with metastatic breast cancer. Re: second opinions: when I was practicing and a patient wanted a second opinion I helped them get it — if the second opinion doc agreed with me I felt smart, and if they had a different approach then I learned something. Win-win!
A from Dr. Swart: Completely agree. I will assist patients in getting second opinions if they wish to do so.
Q: What would be the best advice for co-survivors? And is there a resource for co-survivors that you recommend?
A from Jamie DePolo: This podcast episode may help you find resources as a co-survivor or caregiver to someone with breast cancer. We also offer a meetup group for caregivers to people with metastatic breast cancer.
Dr. Marisa Weiss: Thank you, everyone, for joining. I'm Dr. Marisa Weiss. I, like many of you, know what it feels like to hear those earth-shattering words, "You have breast cancer." Despite all the medical training, years of helping patients, and the deep knowledge about the disease, I, along with our other guests this evening, felt our own lives come to a screeching halt when we got that call.
For me, it was 14 years ago. That's when I was diagnosed with breast cancer and became what I call a dual citizen, both a doctor and a patient. And even with my professional background, it took a lot of time, planning, and careful evaluation to process everything I had to go to. I was lucky to receive the best care possible, but there were still major gaps.
We have walked in your shoes and that's why we are here today to support you by sharing what we've learned along the way.
I'm thrilled to be joined by Dr. Michele Ley, Dr. Pamela Munster, and Dr. Rachel Swart. Dr. Ley is a board-certified breast surgical oncologist and the founder of Tucson Breast Health Specialists. She's a former director of breast surgery in the University of Arizona Health Network. Dr. Munster is the director of the Early Phase Clinical Trials Unit, co-leader of the Center for BRCA Research, co-leader of the Molecular Oncology Program, and a professor in the Department of Medicine at the University of California San Francisco, UCSF. Dr. Swart leads the Breast Cancer Clinical Trials Program for the Tucson Division of Arizona Oncology as well as the high-risk breast cancer clinic. Her clinical focus is on helping women with a specialty in breast cancer. I'm looking forward to talking with you all about a transformative chapter in each of our lives that changed how we see ourselves as people and as doctors.
Whether you're newly diagnosed, in treatment, managing survivorship care, or supporting a loved one, we hope today's webinar helps you feel more empowered.
When you register, some of you told us things that you'd like to hear more about, like how to advocate for yourself, especially when you've read reliable research and have an informed opinion about what you think would work best for you. Also, how to choose a medical oncologist, surgical oncologist, and radiation oncologist, as well as any other member of your team, when to look for a new doctor or get a second opinion, how to improve communication with your doctor and build a good relationship, what to expect after treatment ends and how to reduce your risk or recurrence. Plus, you asked about tips on how to make your lifestyle as healthy as possible through treatment as well as afterwards. These are all important topics that we'll discuss in a bit.
Often, fear and stress can make us doubt the treatments we're receiving or the doctors who are taking care of us, especially if something doesn't go right or something happens that's not what you expected. We wanted to know whether your voice is being heard and your preferences are being taken into consideration during your care. These are factors that can contribute to a good relationship with your doctors or one that doesn't work out as well. And also how to hang on to a positive outlook as you navigate your way through this jungle of the experience of having breast cancer.
So during the registration, we asked you guys, "Are you satisfied with how well you and your doctors collaborate when making treatment decisions?" And as you can see here, about half of you said yes, you collaborate well with your doctors on decisions. About 29% said you weren't sure about that, and 20% said no, you wish you had more discussions with your doctor before a treatment recommendation was made. So what does this tell us? Well, we're moving in the right direction but there is a lot of room for improvement.
Like I said, I had the best care possible but there were still major gaps. And becoming an empowered patient is key, whether you're a medical professional dealing with breast cancer or someone who is hearing the cancer vocabulary words, all those mumbo jumbo that we hear as we move through our diagnosis and treatment if you're hearing it for the first time. The bottom line is that it's your life is precious. You deserve the best care possible. And one thing we've all learned, you have to be your most powerful advocate.
The desire for personalized and attentive care was evident in the powerful statements that many of you gave when you registered. For example, someone said, "I want to be treated like a person, not a medical chart or a statistic." Someone else said, "How do I negotiate my way through various treatments and life decisions when there's so much information and differing opinions all coming at me the same time?" Another person said, "Why is almost everyone left out to dry once they finished treatment? There was not a lot of emphasis on mental health, but we are not the same people we were before cancer," that person said.
Now, it's my pleasure to introduce Dr. Michele Ley, Dr. Pamela Munster, and Dr. Rachel Swart. Welcome, welcome, and thank you all for being with us here today and for the generosity that you have to share your own story.
We'll be answering questions that everyone submitted when they registered and we'll try to answer more questions live for everyone using the Q&A section at the bottom of the screen. And. We encourage you to put your questions in there and we'll get to as many as we can.
Dr. Ley, I'd love to start by having you share briefly about your story when you were diagnosed, what happened in your life at that time, and what your experience was.
Dr. Michele Ley: Thank you so much for having me participate today.
I was diagnosed eight years ago. I was diagnosed on my daughter's fifth birthday, sadly. I had a screening mammogram, which was normal, but I had felt something so I had an ultrasound. That was also nothing. But I remember thinking while the radiologist was doing the ultrasound that my breast tissue looked denser than I thought it was. And then I had a new version of a risk evaluation software that I'd put on my computer so I thought, "Well, I'll just do my risk calculator to make sure it's working." And my risk was higher than I thought it was. So I ended up getting an MRI. And so all within the space of about a month or so, all those things happened and I ended up having a cancer on the MRI. Then I had a biopsy and then I got the pathology. The pathologist called me, which is a little bit different being a physician. You can get your results directly from your colleagues, which has its pluses and minuses. But he called me on my daughter's birthday to say that it was breast cancer.
So then, I... Actually my husband was remembering yesterday. When I told him I was doing this today, he was remembering that I freaked out. But it's funny. In retrospect, I don't remember feeling that way, but I guess I must have.
Dr. Marisa Weiss: What did you do? What does freaked out mean? How did that manifest itself?
Dr. Michele Ley: Well, I think I was at work, but I was finished with work and I drove right to his office and I started crying and telling him about it. So I guess I did from his perspective. And also your spouse or your family doesn't know how to react either. They're just as scared as you are.
So anyways, I end up choosing to have a double mastectomy. And partly for privacy reasons, probably mostly for privacy reasons, I ended up going to another city for my treatment. I had a strange sense of being ashamed of having the diagnosis, and so I didn't really want to talk about it. And I didn't want it to, I was only in a new job for about eight months, and so I didn't want it to affect all that. So I had to drive two hours for all my appointments and surgery. And for one of my surgeries, my husband couldn't even come. It had to get rescheduled so a friend had to take me.
So anyways, I had the double mastectomy and it turned out I didn't need to do any other therapy. Some therapy was recommended, but I went to see multiple people, including Dr. Swart, and in the end I decided that the side effects outweighed the benefits for the additional therapy for me and so I didn't do any other therapy. I think that's one of the challenges of being a physician with breast cancer who takes care of breast cancer patients, is patients often ask me about what therapies I had. And for a long time, I didn't talk about my breast cancer at work probably for several years.
Dr. Marisa Weiss: In my office, patients of mine were calling up my secretaries and saying, "I need to know what she did because I can use it." They were so persistent and we had to write a script so everyone would answer in the same way and protect my privacy and let me, give me the space to manage the process.
Dr. Michele Ley: Yeah, I think that it's something, actually, I've talked with some other surgeon survivors, that it's hard to... You don't want to disclose it and have it affect the patient's decision-making because we're all unique. Our cancers are different. Our life situations are different. What treatments are available sometimes are different. So it's always a struggle. But I think it's best to let people know about it. But you can also say, "I, just like you, I want to have privacy too. So I don't always share all the treatment details with people."
Dr. Marisa Weiss: Right. Well, thank you for sharing all that. I'm going to ask Dr. Munster, if you can share us, tell us a little bit about your story.
Dr. Pamela Munster: I remember going after a while because there was this big, this debate, do you have a mammogram between 40 and 50? And Californians are not that keen on doing early mammograms. And I decided to do a mammograms. And then I remember being at the conference and the radiologist called me. You know how you get hundreds of calls from a radiologist and you think like, "Okay, what person is now having a bad diagnosis that I have to call later?" And I remember she called me by my first name, and usually people are differential and call you with the last name. And it go like this woman kept going, "Pamela, I have some bad news for you." And I go like, "Yeah, who is it for?" And then she said, "Well, it's for you. Your mammogram is really looking bad."
And so it was the first time it dawned on me that I've crossed from a provider getting results from exams for someone else to getting results from me. And it was just so this very first incidence where it became very personal. This is about me now.
And so like Michele, I ended up in a situation where I had to have a double mastectomy. I had no family history of breast cancer. I looked up my pathology and just looked like really unusual for irregular breast cancer. So I talked to a pathologist and I said, "This looks like a BRCA2-related cancer." So then I decided to go and pursue BRCA testing. And of course at that time, this was 12 years ago, I wasn't really a candidate. I didn't have any family histories. No one of my family had really breast cancer. It just didn't seem, too, that I would qualify. And ultimately I did the BRCA testing and turned out to be BRCA2-positive. So in one year, I ended up with three surgeries, had a double mastectomy and reconstruction. Then I had my ovaries out.
And the two things that really stuck with me that year, how hard it is to wait for results. So if you ask me in a nutshell, what did I learn from going from doctor to being a patient is tell patient realistically when a result comes back and not tell them you get the result as soon as possible when it's two weeks because then you wait every day. You will wait. So that was hard.
And the other thing is I remember when I had my oophorectomy, my chance by my statistics that I could have a 3% chance of a new called ovarian cancer, and as a doctor, that always seemed very, very low. As a patient, my 3% seemed very, very high. I was a wreck until I learned that I didn't have ovarian cancer. But I think that reassurance that we so lightly give to patients, "Yeah, you're going to be fine," I stopped doing this because we can't provide reassurance until we have a test result, I think. So I now would use words, "Whatever we find, we'll tackle this," rather than, "You'll be fine. Don't worry about it." I think that, "Don't worry about it," when patients really worry about everything, it's really not helpful.
Dr. Marisa Weiss: Right. They call that positive toxicity. And as a patient, you're growing this relationship with a doctor and you want to be able to trust what they're saying and know that when they're reassuring you, that it's based on real, solid information. So I do the same thing you do. I always say to people, "No matter what we find, we can do something about it, but we need to really know what we're up against, the extent and nature of the problem before we can really come up with a treatment plan for you." Those words matter so much, and I think that's one thing I learned in my experience is that all the words matter.
I remember one of my colleagues said to me just after my mammogram showed a problem, she said, "Yeah, I was in the radiology department. I looked over and I saw your mammogram on the screen. I thought, 'Oh my God, that's a big, ugly thing on that mammogram.'" The word ugly, and I know radiologists use that word, but it is painful to hear that if it's your own situation and it just sounds scary and it's not necessary to use words like that. You could describe it in other ways that are actually more precise and meaningful and help guide the plan. So, yeah. I'm going to ask Dr. Swart, how about your story and when you got that call or you went through your diagnosis?
Dr. Rachel Swart: I was diagnosed, actually it'll be five years this October was my diagnosis. I actually received it when I was in clinic giving someone else unfortunately bad news. So getting into doctor mode, it was all focused on the patient and really didn't spend a lot of time focusing on myself even though the realization of what was occurring is like, "Okay, well, I have to take care of this." And it was more along the lines of, "Okay, here's my job and I've got to get it done." Luckily, we have excellent breast surgeons such as Dr. Ley and she was my breast surgeon. I did have a high risk with family history. My mother's a two-time breast cancer survivor. My aunt died of ovarian cancer, but we do not have a BRCA gene. So I decided to do a bilateral mastectomy, which was good because first there was one spot, and then I did a breast MRI and then there was three spots. And then we did the surgery and there was three spots and a positive lymph node by the time got done.
So it was this gradual I think I know what I have, I think I know what I have, and then there's more and then more and then more. And luckily with ER-positive breast cancer, the Oncotype DX testing that was done on my cancers came back as being low. The medical oncologist who is a colleague of mine, because I was young, wanted to give me chemo. And one of the Oncotype DX responder data had not come out yet in regards to lymph node-positive, but I was already postmenopausal so I decided, "No, I think this data's going to be positive so I'm going to not do the chemotherapy and proceed with just anti-estrogen therapy," which I'm glad I opted to do because I had several complications related to my reconstructive surgery, which resulted in six surgeries ultimately, with my last one being about a year and a half ago which was the final surgery that helped to make a huge difference in my overall quality of life.
And it's been a very long road. I would say the biggest thing that I have learned is it is very lonely. And unfortunately, I got breast cancer and had all these complications during COVID, which even made it more lonely. And so that was something that I think I've learned, is to make sure that my patients realize that there's someone always in their corner that will be there to be their advocate to listen, because I just remember needing a lot of that myself, but during the time that that was occurring, it just wasn't available as much as I had wanted it to be.
Dr. Marisa Weiss: Yeah, it stinks. Going through breast cancer stinks. And when you can share that with a patient, they really feel like you understand. Yet each one of you, and myself as well, made our own set of decisions. We made the best decision at the time to get the best care possible. And whoever's listening, even though you've heard people describe they've had bilateral mastectomies, they're in general across the country, we know that at least half of patients, if not more, maybe a candidate for keeping your breasts as an alternative to mastectomy. But everyone's situation is different and you make the best decisions you can at the time. And then you have to live with it, right? That's part of it, is that you have to live with it and you want to minimize the would have, could have, should have that when you look back and think, "Oh my God, what did I do or what did I not do?"
Then of course everyone around you has their own experience that they want to share, and I think it's really interesting how that when you're a patient as well as a doctor, it doesn't really matter that you're a doctor. You experience this whole phenomenon where so many people come at you with these stories, and they're usually bad stories and they're unloading them on you and that can make it even harder to go through it. So we've all learned how to figure out where to get the support we need. And for sure, at breastcancer.org, that's why so many people come to us at breastcancer.org, is to get the expert answers to their important questions and then connect with other people in the community so that they're not going through it alone.
You guys, our audience, our community has submitted a lot of really important questions, and I thought I would hit on some of those right now. One of the questions was, "Did going through breast cancer change how you care for your patients at this time?" We can go through it. Maybe Michele can go first. How did your experience change what you do for the people you have the honor taking care of?
Dr. Michele Ley: I think before I was diagnosed, I was already quite empathetic and I felt like I took my work home a lot in terms of being worried about my patients. And I had a few people say to me, "Oh, this will make you so much more empathetic for your patients." And I found that really, that was hard for me because I was like, I didn't really need to have breast cancer to learn how to be empathetic. But what I did learn is about the recovery process. I tried to do my surgery and get back to work as soon as I could. It turned out that year, I had forgotten to sign up for short-term disability, so I wasn't getting paid and I had to pay for my health insurance while I was off. And then I did, the place I went to turned out to be out of network so that was more expensive. And so I tried to get back to work and I went back after seven weeks, which is usually what we tell patients, "Oh, you can go back to work after six weeks."
I couldn't open the doors in the hospital. I had this whole system of getting it partway open and my leg in there and my arm to wrestle my way in to the hospital. And doing things that required me like pushing my hands together or pulling and pushing, which is a lot of what we do in surgery, was very difficult because my muscles were weak. And so I really try to have an in-depth conversation about what people do at work, how stressful their work is, and encourage them. And sometimes if they're not hearing me, try to use my own experience to tell them, "You really need to take time for yourself with the understanding that not everybody can financially do that. And then if you're not able to do that, how can we help you get back as soon as we can? What kinds of things can we do to get you back so that you can earn a living?"
I think the other thing is about the overall health. You think you're diagnosed with breast cancer, you think, "Oh my God, I'm going to change my diet. I'll exercise every day. I'm going to be this new person that's never going to get cancer again." It's very difficult to do that. I think we all have very busy lives and lots of commitments. We have lots of commitments to other people, and it's hard if you're in a family or with other people at home. You can't just change your diet because then everybody has to change their diet.
So I try to encourage people. "Yes, I only have 15 minutes at a follow-up visit to tell you how you should change your diet, but that doesn't mean you have to do all of it tomorrow. And to try and give yourself a break for different things. If you didn't clean your house because you're sick from chemotherapy, it's okay. It'll get clean later." Those are the things I've tried to... Just give people a break. Give yourself a break and try. And also to recruit, ask patients, "Recruit other people around you to help you." I think that's about the loneliness.
Even though Dr. Swart and I worked together and we had our patient-physician relationship, it's really hard to make time to talk to one another and then you think, "Well, you don't want to talk about this depressing thing how we both had cancer or you don't want to depress your friends or your family members talking about it," but I think people want to help when you're diagnosed. They don't always know how to help. And you don't even have to talk about it. Maybe you just go out to lunch with someone or go for a walk with someone. I know I'm digressing from what you were asking, but that's part of the recovery process that I don't think I understood until I was through it that it doesn't just stop the minute you're done with treatment. Like one of the quotes you had, this is something you carry with you forever. So finding ways to be able to talk about it with people.
Dr. Marisa Weiss: Yes, absolutely.
Dr. Michele Ley: And for me, being the person the patient can talk to, like you said, I want to be the person the patient can come to when they are having an issue that maybe isn't related to their surgery.
Dr. Marisa Weiss: Right. I had to go back to work. I felt like I had to go back to work. Two weeks afterwards, I crawled into the hospital and I really couldn't do much and I was in such pain and it was not a good decision. But one thing that worked for me in terms of cleaning, I didn't clean the house. What I decided was I was going to put cleaning solutions everywhere. So when things that had the perception that my house was clean because I had products everywhere and I had vacuum cleaners pulled out of the closets and in rooms so that people could see them everywhere, and I thought, "That works for me." It wasn't a problem.
Okay, Dr. Munster, I'm going to ask you a question. It's another question that came in. "Is there anything to look out for when searching for an oncologist or a surgeon who communicates well with their patients? How do you find that doctor that you can relate to?"
Dr. Pamela Munster: That was actually something that I really learned early. In my career, I put this huge pressure on me that I need to be the doctor for everybody. And when I had cancer, I realized there's a whole bunch of people I don't like. There's a bunch of surgeons I don't like, I would never go to just because. And they may be super fine surgeons, but they're not my type or this is something I don't want to... I don't mesh with them. It's like what I realized is when I was going through this, how much of this is actually a relationship. And like in a marriage, it can be two wonderful people and they have a really bad marriage. That doesn't make takeaway.
So I think now when I feel like I'm not a good match with the patient, I tell that patient that I think they'll be better off with someone else because the patient doesn't trust me or doesn't have a good relationship. How are they going to ask me intimate questions on how does it get? At the same time it's like someone leaves me or goes to someone else, I don't take this personally. I just think patients deserve better.
So this is not always that easy, but I also, I often tell my patients now. "I'm a certain age. I have a set personality. This is not going to change. What you see is what you get. And if that's not your cup of tea, I can't just change my personality. Within range, but..." I think an oncology relationship with a patient is usually for breast cancer, you're looking at 5, 10 years of a relationship. You can't do this with someone whom you-
Dr. Marisa Weiss: Right, you can't fake it.
Dr. Pamela Munster: No, I think people just deserve better than that.
Dr. Marisa Weiss: Right. You want to be yourself.
Dr. Pamela Munster: We should be honest about this. And I think that's an important part. And of course at the same time, as I try to tell patients how human we are, we have good days, we have bad days, we are hungry, we are cranky, we have families that have issues, I think it's a relationship. And the more you can treat this as a relationship with someone who's caring, probably the more care you give. And I think you need to give a doctor guidance on what you need. Some people have different needs than others. We are not mind readers. I think it's one thing to be open, but I think it's really important to see this as a relationship with another human being.
And if you go to a lunch with someone, you don't spend the first 10 minutes yelling at them for being 10 minutes late. That's not going to make for a good lunch. I think that's the assumption that the doctor's not late because they're out there doing the nails or chit-chatting around. It's like we usually run late because we help out someone else. So I think it's these things like managing this and trying to see good intent in your physician and in your patient, you'll go along.
Dr. Marisa Weiss: Absolutely. Absolutely. It definitely is a relationship between two people, but it's all about the care of the person who's being diagnosed. And so you want to make sure the doctor you have is a good fit as you were saying. I'm going to ask Dr. Swart the next question. Should patients ask their oncology team upfront how best to communicate with the team in between appointments so that you can set your expectations and you can reduce your frustration and also show mutual respect so you can hopefully get on the right footing?
Dr. Rachel Swart: Well, if your oncologist or your oncology team hasn't told you how to communicate in the visit already, because I do that upfront with my patients because I think if the patients know what the expectation is to begin with, your relationship is only going to get stronger. And if they know this is the best way to get ahold of you and they have the expectation of, "Okay, if I go through our portal," which we have an excellent portal that we use, I'd say, "I am turning around those messages so that you guys are getting some communication within 24 to 48 hours."
We even tell mainly our treatment patients, we always tell them, "If you are having symptoms, call the office directly," because we've done phone trees and stuff like that throughout the years. And what we have found is that when patients are on chemotherapy and really not feeling well, we need to have people answering phones. So we've gone back to really answering phones for our patients, and that sort of communication just continues to build that relationship that you need because you are looking at a very long-term relationship with these patients.
Dr. Marisa Weiss: Absolutely. You want to be able to feel comfortable in knowing who you're going to call and then that person's going to answer the phone. That person cares about you.
Dr. Rachel Swart: Yeah. So we do have cards for our triage nurses. We have cards we have for our head nurses so that everybody that's coming in that's a new patient is actually given a folder with those names of those individuals and specific numbers as to who they're supposed to call. And so I think that makes a huge difference in patient satisfaction and expectations for patient.
Dr. Marisa Weiss: Absolutely. Absolutely. Dr. Ley, I was going to ask you a question. Obviously having a diagnosis makes you vulnerable and you're dependent on people that you maybe don't even know, and people are afraid to offend their doctor. How do you advise people who are nervous about getting a second opinion or even switching a doctor if it's not good?
Dr. Michele Ley: I think this one is interesting because like Dr. Munster said, I think patients are really, sometimes they're mad at us because we're late, but a lot of times patients are afraid to offend us and afraid to hurt our feelings. And I have to admit, I have had my feelings hurt when someone wanted to go see somebody else or it doesn't seem like it's a good fit. But on the other hand, that pales in comparison to my desire for the patient to have the treatment that they feel like is right for them and the relationship they feel is right for them. I'd much rather have someone have my feelings hurt a little bit than have them stick with me when it wasn't the right fit.
What we do for people depends so much on trust and their faith in the medical system and in science and their trust that we are there for them. And so if you don't feel like you're trusting us, that even if we're not aware of it, it injures the relationship and it can harm the outcomes, I think. So I would much rather have a patient seek another opinion and go somewhere else than stick with me just because they're afraid. I think when patients, sometimes patients ask if they should have a second opinion. That's harder because I'm not inside their head wondering. I don't know why they're asking that, but usually I say that I can say in my community that the breast surgeons do things pretty similarly. Maybe our cosmetic outcomes might be slightly different or we might have some nuances, but that's really good for the most part. We do have that.
Sometimes patients though aren't necessarily looking for a better fit emotionally, but sometimes they're looking for an answer that they perceive as the right treatment for them. I guess I've seen this before that sometimes people want to have a second opinion to see if someone will give them a different answer than the one that they got first.
Dr. Marisa Weiss: Yeah, they need to hear it from a different person or they have any... Wrestling with some uncertainty or some question, they just-
Dr. Michele Ley: Right.
Dr. Marisa Weiss: Yeah. Thank you. Thank you. Dr. Munster, obviously even with it, even if you do get the best care, we all need to learn how to speak up for ourselves since it's our life that's at stake. What's your advice for how best to speak up when you feel intimidated or rushed or someone was dismissive with you?
Dr. Pamela Munster: I think there are people that are naturally more confident than others and feel like they're just more empowered. And I think often what I find really helpful is if you bring a friend who asks. So I can tell you when I went through my plastic surgery visit, I come across as very confident and I always talk a good game, but I was completely freaked out. Every time the surgeon talked about this cutting, making an incision, my mind was wandering off and I swear I didn't hear anything what he said. So I sat through a full hour of conversation with the surgeon, no idea what he's going to do. And then I went to my nurse and said, "Can you go with me for the next visit? Because frankly, I get so freaked out when someone wants to take a knife to my chest that I can't hear anymore."
So the nurse made me write a 10-bullet what I want to know, and then she read them and ask. And I swear, anyone who knows me would never dream of that. I would actually have anxiety of asking anyone a question, but you get really worked up. So I think it's easier to bring someone else. Go with someone. It's a lot harder for a physician to dismiss a couple, a friend, spouse or anyone, than dismiss an individual. As an individual, you may sit there, forget your questions, whereas the person who is there with you taking notes may say like, "Hey, but by the way, you wanted to ask this question. Do you feel like you have a good answer?" Just bring a friend.
Dr. Marisa Weiss: Right. And just having the ratio. Sometimes when you go to see your doctor, there's just little old you and then all of a sudden the door opens and all these people come in, the team comes in and you feel outnumbered. So if you do have someone else with you, you just feel like a little bit more confident that you feel like you've got your team there too, and it's not just little old you that makes a difference. Dr. Swart, I was going to ask you a question about just practical tips for preparing for appointments. What do you personally do ahead of time when you meet with your doctor that other people can learn from you? How do you prepare for that visit?
Dr. Rachel Swart: I have to write down my questions. I'll tell you, the anti-estrogen therapy has really been one of those things that does affect the memory over time. And so anytime I am looking at, "Okay, what about this particular thing? Or am I thinking about how long do I want to be on my anti-estrogen therapy? What's the new data on that? What should I really be testing? What new tests are out there?" I write down those questions. And I encourage my patients also to write down those questions as they're getting new information, as they're looking at different websites and resources and coming prepared for that appointment so that we can talk about the new treatments that are out there or the new tests that are out there that give us more information on how to treat breast cancer. So I think really that's the best way to prepare for your appointment.
And I think also that patients, I think patients should engage their doctor in answering those questions. I know there are some times that we can get into a situation where the doctor's so busy that the doctor's in and out of the office and you barely even had a chance to even get one question out. I think patients need to be more proactive in making sure that they understand their diagnosis, they understand the treatment plan, and they make sure that their questions are being answered successfully. And it may not necessarily be by the doctor sometimes. We all are rushed. There's a variety of different patients that do need to be taken care of, but it's also making sure that my social worker or my navigator is also engaging with the patient and maybe they're the ones that are helping to answer some of those questions as well. So making sure that you have those resources set up I think are very important.
Dr. Marisa Weiss: Yeah, absolutely. And you want to ask the right doctor for the right question. So for example, if you have a question about surgery or plastic surgery, you want to ask the right surgeon for that. Or if it's a question about anti-estrogen therapy, you want to ask your medical oncologist who's got the most expertise in that area. And it's good to let the doctor know up before you get there, let the nurse know ahead of time that you do have a number of questions. And as you say, preparing for everything like your visit with your doctor or laying out the clothes you're going to wear the next day, whatever you can do to a gift to yourself to help take care of yourself and help yourself get the best care with the most confidence, like you're wearing what you want and it gives you more control over everything. And it's just that you're taking care of yourself and you're helping yourself get the best care possible from other people as well. And that can make a big difference.
Also, if you don't have all the answers to your questions, you can make a plan like, "I've got additional questions. I know you're busy today, but can we set up another appointment or could it be a telemedicine visit or can I email them to you or can speak to your nurse, or are there questions that I have on this list that I could get the best answer from another person on your team?" And it always makes sense to put the most important questions at the top in case you don't have a lot of time and you want to make sure your most important questions are answered before the doctor slips out the door.
Dr. Rachel Swart: That is true.
Dr. Marisa Weiss: Well, I have you, Dr. Swart. Many of us have struggled with significant side effects from medications, like you were saying that you dealt with it. I was on anti-estrogen therapy myself. And while we know that our treatment can save our lives, we also need to protect our quality of life. So what do you do when you feel like you've hit your limit and you need a new plan? How do you advise your patients on how to manage that kind of conflict, that making a decision after you made your... You made your decision, you thought, "I got my plan," and you're executing your plan, but then when you get started on it, you're not getting along so well and you want to reevaluate. How do you do that with your patients?
Dr. Rachel Swart: Well, that's a hard question because there's a lot of processes as far as the plan, and the plan can change based on side effects you're having with the medication, based on the new data that's coming out, based on new testing systems that we have to determine how long people should even be on anti-estrogen therapy. Myself, one of the biggest things is I am coming up on five years. I've got to make a decision for myself. Am I going to endure another five years of anti-estrogen therapy? And that's a really tough question. I don't think I've even in my own mind determined based on the data I know as a medical oncologist how I'm wishing to proceed. I think that's a very difficult decision to have with a patient. And I think that's where the medical oncologist really has to take the time and sit down and go through the risk profile for people, the quality of life, what side effects are you continually having on AI therapy?
And I think ultimately I have found that if I can have a good relationship with my patient and manage their side effects and really focus in on how do we address your quality of life so that we can keep you on your medication, those patients do really well and they're highly motivated to stay on their medication because they know it's important for their life. And so I personally have a very strict regimen that I try to stick to in order to minimize my anti-estrogen side effects. So I am a big exercise person. I've stick to a very clear diet to keep myself healthy, try and keep to a good regimen of sleeping, although even sometimes that doesn't necessarily work. I have tried different supplements over the years. I've seen functional medicine doctors to actually determine different things that I can do in conjunction with my anti-estrogen therapy so that I can continue to get the treatment that I feel is most beneficial. So I've tested a lot of waters out there trying to stay on my estrogen therapy.
Dr. Marisa Weiss: It's tough. It's a big job to do and it's a lot of work and it requires a really big commitment because it can mess things up, how you function, how you feel, your energy level, how much you sleeping, your sexual life, the way your hair looks, everything. And of course, a lot of people said, "AI, you mean aromatase inhibitors, the medicines that can make you feel like a little old lady? And how do you manage all that?" Dr. Munster, you went through not just your breast surgery, but because of your inherited genetic mutation, you also decided to have your ovaries and fallopian tubes out. So you went through major, major changes in a really short period of time. And for you, the same question, when you put yourself through so many big steps, all with the goal of saving your life and protecting your life so you can move forward and be to a safer place, but when you hit a limit, how did you navigate through that limit and manage side effects or whatever else that you went through?
Dr. Pamela Munster: I think I have to say I was not prepared how emotionally difficult it was to lose my breasts. I never was a breast person. I never thought it was really that big a deal, but I was completely unprepared how emotionally raw I was for about a year and a half after that, and I hit pretty low points. And at some point I was thinking, I just want to do a Thelma & Louise and go over an edge. And I was then reminding myself that I just went through three major surgery to keep myself alive, that it would be very unreasonable to not want to live.
And I now warn all my patients. So for about a year and a half, I feel like and happens to a lot more than just me, it's like your immortality is robbed of you in a very hard to explain way. And everything is just your bottom just falls out. And then how this comes, it goes away. I don't know why 18 months into this, I all of a sudden felt better. But I think this is the hard part. And what I think, I want to go back a little bit and speak to the loneliness. I remember walking into the hospital and we had this long hall with all the physicians' offices, and I would read all their names and I would just not feel part of them anymore. I just felt like now I'm someone different. I'm with a cancer. I don't have the guarantee that I'm going to grow old. And as I said, I was very, very unprepared for that. I was just completely unprepared for having cancer.
And I'm sure there's no good preparation for having cancer, but I was very, very much struggling with this whole concept. And then I feel a little bit the worst is as you go through treatment, all your friends are rallying around you. And then you're done with treatment and the people just move on and everyone thinks like, "Oh, you're fine now. You're done. You're fine." But you're still with this, it's a little bit when you have a near miss with a car accident, how for hours later you envision that crash-
Dr. Marisa Weiss: Wow, yeah.
Dr. Pamela Munster: ... that doesn't happen. I think that happens with cancer. And I think the loneliness in this, and as I said, I was thinking myself, "ow can I have been a physician for so many years and not be aware of that?" But it's...
Dr. Marisa Weiss: Right.
Dr. Pamela Munster: ... really striking.
Dr. Marisa Weiss: Yeah. That's one of the things that Breastcancer.org that we're struck by, because we have this enormous community of people, 12 million people, that connect with each other through our community discussion boards and through the meetups, and they're starving to connect with someone that can hear them, see them, feel them, know what they're experiencing. And they don't get a dismissive, "You'll be okay," kind of answer. And I remember I had a number of pity parties that only I was at. I didn't really want to drag anyone else into it, but I have to say that at my work and at breastcancer.org, everyone was incredibly supportive and helped me with communications. Because all the talking to everybody and explaining everything was exhausting, and you just have to make your way through it. When I went through it, I had three... My three kids were a little bit older in college. And Michele, I was going to ask you how you manage with your daughter. You said she was five at your diagnosis, and how's that played out, and I will ask another question after that.
Dr. Michele Ley: I wanted to... Yes. So she and I haven't talked very much about it because at five, she was a bit young, I thought, and how do you describe that? And since I didn't look a lot different physically and I think I didn't want to talk about it either. But I have a son who's five years older than her, so he was 10. So we went to lunch one day and I explained what was happening and what was going to happen and that I was going to be fine. But I think that what Dr. Munster said about losing your immortality, that was one of the hard... I actually forgot about it because it's been eight years, but actually it's truth. If I was really honest with myself, I haven't forgotten about it. It did take me a year to get used to how my body felt afterwards. It was almost a year to the day from my surgery that I was like, "Oh, now I don't notice the changes any more today."
And then the psychological changes, I had once became very depressed because I thought initially I was going to take some of the hormonal medicine, so I abruptly stopped an antidepressant I was on so I became depressed and I couldn't find someone to help me. So I ended up having to go back to another town two hours away to get treatment for that. And then you don't want your patients to know that you're vulnerable because you don't want them to think that you're not capable of taking care of them. And I had another physician tell me that when I was diagnosed, don't talk about it with your patients because they'll use it against you. So all those kind of fears. But I think the main, immortality, like my husband, and he was scared of course, but he could not understand naturally. He couldn't understand that feeling that like, "Oh my God, I could die from this someday." And I think that's very hard for someone who hasn't experienced it, whether they're your family or your friend, to grasp really what that feels like.
And now it's translated. When I turned 50 two years ago, I started worrying about something else. My dad had cancer and he died at 64. And so I started thinking, "Oh, maybe I only have 14 years left." And I don't think if I hadn't had cancer at a younger age, I'm not sure I would have thought that when I turned 50. It just colors how... Like some of your quotes, I think, and a couple of the people have said, it just changes who you are. Hopefully for the better and hopefully not for anxiety provoking all the time. But that is one thing that is different for me, that I do talk to patients about that sometimes because we forget to ask patients about their mental state.
Dr. Marisa Weiss: I was going to ask you each one of you, I got a minute each, if you could tell me in your every day, what do you do to try to be as healthy as you can be in your every day? What do you stick to? What works for you? Eating, exercise, whatever it is. Michele, Dr. Ley, well, why don't you start off while you're here?
Dr. Michele Ley: I'm trying to eat more vegetables. That has been my goal for the last couple of years, get more vegetables on my plate and I've become a fan of trying to find new recipes on Pinterest. I don't really do all the TikTok and everything, and then I share them. I share the recipes with my patients. I haven't quite formalized that yet, but I'm hoping to have a recipe of the week for people. I think that that's something simple that we can all do. And if I can model it myself by doing it for myself, and then that's what I do. My goal would be to do more yoga but that doesn't always happen. But that's something else that I like to do for my health.
Dr. Marisa Weiss: Well, and for your practice too, just to be limber and range of motion.
Dr. Michele Ley: Yes.
Dr. Marisa Weiss: That stuff. That's great. How about you, Dr. Munster, in your everyday, what do you make sure to do to try to stay as healthy as you can be in the everyday?
Dr. Pamela Munster: I actually looked at it as a bit from a difference. So I was always really ambitious and very, very driven and probably a little bit too ambitious and too driven and too peer-oriented. And a friend of mine just during breast cancer said, "Be kind to yourself. Don't forget to be kind to yourself." And now I am. I'm just a lot nicer to myself. Hopefully, I'm nicer to others, but I'm a lot nicer to myself. Exercise and diet is like I love to do this, so this is not a hardship for me, but I don't force myself to do all kinds of stuff that I used to do. It's I try not to outperform my own demons anymore. I just like to quench them and try to...
Dr. Marisa Weiss: That's a great step and something we can all learn from. How about you, Dr. Swart? What about you? What is a few things that you do in your every day that you try to keep you healthy?
Dr. Rachel Swart: Well, exercise has always been a big thing for me. And I rearranged my clinic schedule to really make sure that I kept to a very good exercise program. I would say more recently, last October, I had a scare with a benign brain mass. And so that really triggered me to really start thinking how do I change my mindset that had an emotional impact on me. Luckily, I didn't have to have any surgical intervention and we're monitoring. But I think the biggest thing I ended up doing is practicing more gratitude and being more cognizant of what Dr. Munster say, being kind to yourself because I think we are our harshest critics and we tend not to be mindful of taking care of our own wellbeing. And so that's really something I'm focusing in now on.
Dr. Marisa Weiss: That's great. For so many people, we have are trying to manage our weight in our everyday night or day. A text group with friends of mine, that we had one rule, which was no shame. Everyone has to be nice to themselves. Don't be calling yourself a fat pig. We're just going to share our weight every day. And the things that help us. And actually, we were pretty successful. I got to get back to it, but that's the way it is. It's a lot of work in the everyday to stay as healthy as possible, but to look forward to the good times. And that's what all that hard work is about, is to try to get back to a life that's worth living.
And when I was going through it 14 years ago, I was thinking like, "Oh, maybe one day I'll have a grandchild. "Well, finally I have a grandchild and she's almost two, and I've got two more on the way. So I feel like it was worth the battle, but I know a lot of people are listening are still in a battle, and you just do the best you can in your everyday life as you move forward.
So that will be our last question today. I know we have so much more to talk about, but I want to thank you so much to each of you, Dr. Munster, Dr. Ley, and Dr. Swart. You really shared so much about your personal experience, and I think it really has helped other people who are participating.
Before we go, I want to really emphasize that it's your doctor's job and privilege to help you and to understand your unique situation and preferences. And we know that partnerships, this relationship, they benefit from the clear communication and mutual respect, which is why the tools and the resources that we want you to have those tools and resources that you'll need to play an active role in your own care.
So we encourage you to work with your doctors and nurses to build that relationship that gives you the confidence as you navigate the path you must take after a diagnosis. And we all know it's a lot of work and it stinks, but there are others going through it and you're not alone even though it can be so lonely as you make your way through it.
Empowering people with knowledge and with a of the community is exactly why I started breastcancer.org. We're almost 25 years old now, and I want to thank each one of you for being here today and for being part of our community. Thank you so much.
We will email you links to useful information, including a recording of today's discussion, as well as a link to register for our July webinar on corrective breast surgery. We hope you can join us then and we want you to take care of yourself and be nice to yourself. Give yourself grace, and we hope to see you again soon. Thank you.
— Last updated on July 16, 2024 at 3:17 PM