The experience of being a patient is inextricably linked to the experience of being a doctor. Bess Siegal is one of my longest term friends (she's known me over half of my life!), and she was diagnosed with (presumed) lung cancer in 2020. We talk about the importance of tissue/pathologic diagnosis, the doctor-patient relationship, what we do with cell phone numbers (!), and how asking for help makes relationships stronger. Bess Siegal is a talented, intelligent, and savvy small business owner who has developed large-scale web applications, educational apps, and currently builds websites for authors and small businesses. She attended Princeton University, is married with three children, and founded siegalworks.com. Her recent projects include creating with her youngest an NFT collection, which when launched, will benefit causes that support play for children and resources for families and patients impacted by lung cancer. She, herself, is a stage 4 lung cancer survivor and shares her story to help others. Links to articles: Healthy Women and Lungevity.
The experience of being a patient is inextricably linked to the experience of being a doctor. Bess Siegal is one of my longest term friends (she's known me over half of my life!), and she was diagnosed with (presumed) lung cancer in 2020. We talk about the importance of tissue/pathologic diagnosis, the doctor-patient relationship, what we do with cell phone numbers (!), and how asking for help makes relationships stronger. Bess Siegal is a talented, intelligent, and savvy small business owner who has developed large-scale web applications, educational apps, and currently builds websites for authors and small businesses. She attended Princeton University, is married with three children, and founded siegalworks.com. Her recent projects include creating with her youngest an NFT collection, which when launched, will benefit causes that support play for children and resources for families and patients impacted by lung cancer. She, herself, is a stage 4 lung cancer survivor and shares her story to help others. Links to articles: Healthy Women and Lungevity.
[00:00:00] Christine Ko: Welcome back to SEE HEAR FEEL. Today, it's very exciting. I have one of my friends who I've known the longest here with me. today. Her name is Bess Siegal. Bess Siegal is a talented, intelligent, and savvy small business owner who has developed large scale web applications, educational apps, and currently builds websites for authors and small businesses. She attended. Princeton University is married with three children and founded siegalworks.com. A link to that will be in the show notes. Her recent projects include creating, with her youngest, an NFT collection, which when launched, will benefit causes that support play for children and resources for families and patients impacted by lung cancer. She, herself, is a Stage 4 lung cancer survivor and shares her story to help others, and I will put links in the show notes to two of her articles. Welcome to Bess.
[00:00:52] Bess Siegal: Thank you, Christine. It's lovely to be here.
[00:00:55] Christine Ko: Your whole journey, I think, is really inspiring, and I did not twist Bess's arm at all. For the pathologists out there, the tissue diagnosis and biomarkers are so important. To get the right diagnosis accurately and timely is so important because patients are waiting every second, just wondering, what is that diagnosis gonna be? From the medical side of this diagnosis that, unfortunately, you got two and a half years ago, despite all the advances in cancer care and cancer diagnosis, it was still sort ofa guess as to the exact type of tumor you have?
[00:01:35] Bess Siegal: Yeah. I guess it was poorly differentiated. In 2020, I never actually got a clear cut diagnosis that it, in fact, was lung cancer, but the two main tumors were in the lungs. I've actually had several biopsies. The first one was a core needle biopsy through a lump in my pectoral. This was right when the cancer had spread super fast and grew in a really short amount of time. From what I understand, when cancers grow that fast, a lot of it just dies also really quickly too. There was just probably just too much necrotic tissue in there. So that wasn't able to be properly gene sequenced, but my biopsy and liquid biopsy had both shown that I had a high PDL-1 expression, which made me a good candidate for immunotherapy. A little bit later, after I had already started chemo, I went in for another biopsy, a bronchoscopy. The CT scan before that actually showed that chemotherapy was doing its job in reducing some of the tumors. This interventional radiologist sampled, I think, four nodes, but it turns out that those were also not enough live cells to even send off for biomarker testing. The doctor said, let's consider this a win that the chemotherapy is doing its job. And the immunotherapy has basically been doing a really good job. Later on, this past summer in 2021, I had a recurrence, which was very upsetting and disheartening, to have a recurrence so soon. But my oncologist was like, let's just take this opportunity to get another biopsy to see if there's anything new that we can find out. I did get another biopsy, but it too actually didn't have enough to do a complete gene sequencing. It was small and slow growing, so it was okay. Radiation zapped it.
[00:03:34] Christine Ko: One of the reasons I am doing this podcast is because there's still a element of surprise, it seems, when you have a doctor who really connects with you.
[00:03:47] Bess Siegal: One of the side effects of immunotherapy is either hypo- or hyper-thyroidism. So I was getting my thyroid looked at and the ultrasound of my thyroid had a spot that needed to be biopsied. One of the things that my endocrinologist said was that if it ends up being that I have thyroid cancer, thyroid cancers are very non-aggressive. The message that I was getting was, don't worry about the thyroid cancer, if there is one, because if anything, it's gonna be the lung cancer that gets you.
[00:04:20] Christine Ko: Yeah. When you have a doctor that has such a clinical way of presenting important medical information, have you figured out a way to make that better? Not that it should be the patient's responsibility...
[00:04:34] Bess Siegal: That's a good question. I don't know if I've done anything to make it better. I just know that my oncologists have been amazing doctors. When I went to see the oncologist for the first time, he's looking at my CT scans of my lungs, and I can't tell what I'm looking at. It just looks really bad because there's all these spots. And I'm like, I'm sure there shouldn't be all these splotches everywhere. But I was trying to stay positive. That's when he told me that he said that it was probably more likely lung cancer and that was such a shock. Cuz I hadn't any risk factors at all. He handled it very well cause he was very compassionate and knew that it was gonna be a shock to someone to hear. He did a very good job. He gave me his cell phone number and told me I could text him whenever I needed to. Which I was also completely shocked by, and I didn't feel like I could text him over the weekends, but I still did, and he always got back to me right away, which was amazing. And so I really love this doctor.
[00:05:44] He's in a community clinic, and my sister and brother, they absolutely wanted me to find a specialist in a university or Dana Farber. I listened to them because I knew they were looking out for me, but at the same time, I didn't think they understood how important my doctor was to me. But anyway, they got me an appointment with someone very high up in a university hospital. And still I just thought this type of doctor would not be able to give personalized, one-on-one care. So I wasn't gonna switch or anything, but I went to see what he had to say. And it turns out he was amazing, just absolutely amazing. In the beginning, I didn't know what to expect because he had his interns ask you all the questions. They asked very thorough questions. And then when the doctor came in, it was so clear that he just really understood every aspect. The intern had filled him in completely. Sometimes someone asks you questions, and then the doctor comes in, and it seems, oh, why did I bother answering all those questions? Cuz he hasn't even read the file. But this, it had been so clear that he knew everything. He just had so many answers prepared even before I asked any of the questions. And when I look at my list of questions, oh, he answered all of them. And just the eye contact was spot on. Not only did he know what he was talking about, but knew how to convey all the messages in the right way.
[00:07:09] Even though I don't see that doctor very often, he was like, I still consider you my patient. And I was like, how often should I come in and see you? It's not as close. He's like, just send me an email, and I was like, okay, I'm sure these emails will never get read, but incredibly, he always responds right away. It's just those little touches.
[00:07:27] Christine Ko: Yeah. [Yeah.] I'm so glad that you have had some really good experiences with doctors. I admit when I really like one of my doctors, I'm surprised, and I feel the same with my patients. The ones who seem to really like me seem surprised, like you're saying, oh doctor, thank you for actually calling me. Are we doing such a bad job in medicine that we seem inaccessible to patients? It seems not quite right.
[00:08:01] Bess Siegal: Yeah, I don't know where it comes from, but I feel guilty about taking up so much of my doctor's time. Especially like now, where I'm on cruise control, is what my doctor put in. And that feels great. I know that in the beginning, I wanted to have him like on speed dial. So I think like right now, there are other patients who probably need him that much. And so then I feel guilty about taking up any more time.
[00:08:25] Christine Ko: I know what you mean. I've had doctors give me their cell phone as well, and I've given mine to patients, and when I give mine, patients say, oh, they're happy, but they're like, I don't wanna bother you. And I've felt the same way on the patient's side. Oh, okay, it's nice that I have this cell phone number and I hopefully will never even use it. And sometimes I tuck it away in a place that's not easy to remember where I put it because I don't wanna use it. And so I get that, this sort of not wanting to bother a doctor. But I've told patients, it's my job. It is my job.
[00:09:00] Bess Siegal: But is it your job to be accessible 24/ 7? There's some hours that you need to carve out for your personal life, right?
[00:09:07] Christine Ko: Yeah. But I will say that none of the patients who I've ever given my cell phone number to text me at weird hours. So there's that. And then I do tell people if they bring that up, oh, but I don't wanna bother you. I say, oh, I do turn my phone off at night, so I won't get it. But especially with Covid, the healthcare system has been experiencing staff shortages. Sometimes people have told me, I've left messages for you, and you didn't respond. And I just never got them. So I think that's almost worse. So then if that ever happens to someone for the first time, I'm like here's my cell phone number. Just use this. And it's interesting, I would say more than half of people don't use it.
[00:09:44] Bess Siegal: When the appointments wrap up, and they're always, did you have any other questions? You never remember anything until after the appointment's over... oh God, I should have asked this. And then you have to wait till the next appointment to ask. So it's hard, just being able to sit with a doctor, to relax and feel at ease, so that you can come up with some coherent questions.
[00:10:06] Christine Ko: Yeah, I think that's a good point. It's very easy for me when I'm wearing my doctor hat to forget how scary it can be as a patient. You don't know what's gonna happen, and you don't know what's very routine to the doctor in terms of even what tests to order and then what they would expect in a good case versus a bad case, or like an okay case. You don't necessarily know and there's not enough time for them to explain all of that ahead of time. As a patient, I don't think you necessarily know what to ask cuz you don't have the experience yet. And then as you get results and you're experiencing it in the moment, then that's when you have questions. And then if you don't write them down, then you're gonna forget. I'll forget to ask. I remember when I was taking my son to appointments that I would feel very anxious about, and just in the moment I might even have stuff written down, but if the first person that I would encounter in the office would offend me in some way, all my questions would fly out the window.
[00:11:06] You touched on some things that it would benefit people to know as a patient, but did you wanna say anything else?
[00:11:13] Bess Siegal: Just in terms of being a patient, this is not having to do with doctor-patient relationships, but more like just relationships in general. One thing that I was a little reluctant to do is accept help from a wide community of friends. First of all, it was during Covid, and it was just a terrible time for everybody. I didn't wanna ask so much of other people, but in the end, allowing people to support you however they can, fills a kind of bucket in a way that is astonishing really.
[00:11:47] Christine Ko: Yeah. I know very little about friendship.
[00:11:50] Bess Siegal: That's not true.
[00:11:52] Christine Ko: That's totally true. As I said in my introduction of you, you're one of my longest friends. I really credit you for that because I've realized since having kids, the way I grew up, that I just really don't know very much about relationships. And friendship definitely is included in that. Part of the reason that I do this podcast is to learn about it, and to learn from people who know better than me, and more than me. And that's really true, being able to ask for help and then accept help, it makes relationships stronger. So, I'm glad you brought that up.
[00:12:24] Do you have any final thoughts?
[00:12:26] Bess Siegal: Just wanna say thanks for having this podcast, and I read your book and it was really eye-opening. I remember having this conversation with someone else with a an recurrent cancer diagnosis and was struggling to find the right specialist or doctor to see next, telling us how all the doctors at this place were... no bedside manner, to put it bluntly. And someone was like, in this case, really, who cares about bedside manner? We really just need someone who's smart and can tell us what's the next step. And I was like, no, not true. I just read this book by my friend Christine Ko, and doctor-patient relationship is so crucial. Anyway. That's it.
[00:13:15] Christine Ko: Thank you for reading it, that's very meaningful to me. I have a website that Bess built. Bess is an amazing website designer. She designed my website, and this podcast actually would not be happening if it weren't for Bess because one of her kids actually helped me. I do realize the power of friendship because I wouldn't be able to do some of the things that I do without you.
[00:13:42] Bess Siegal: Oh, thanks. I was happy to do it. And I could also plug my super project with my youngest kid. I'm just really happy to get to assist her in this and put it into fruition. She did a lot of the artwork for it, and I did the coding.
[00:13:59] Christine Ko: That's amazing. You're amazing. Thank you.