A full hysterectomy could prevent cancer - but it also kickstarts menopause: Pamela Esposito-Amery’s story

[00:00:00] [SPEAKER_04]: Hey, it's Golda. Before we start this episode, I wanted to say thank you to the listeners who emailed over looked and sent in voice memos to share their cancer stories.

[00:00:11] [SPEAKER_04]: Stay tuned to the end of this episode to hear those stories.

[00:00:15] [SPEAKER_02]: Do I have a fever? Feel my forehead? This is Pamela Esposito-Amerys.

[00:00:22] [SPEAKER_02]: I've had surgeries before, so it was okay. I was a little groggy, but I was fine.

[00:00:26] [SPEAKER_04]: Picture this, a hospital ward in the recovery room.

[00:00:29] [SPEAKER_04]: Pamela has just had a full hysterectomy, a removal of the phylopine tubes, ovaries, uterus and cervix.

[00:00:39] [SPEAKER_04]: But the removal of only one of these organs triggers menopause.

[00:00:44] [SPEAKER_02]: You guessed it, the ovaries.

[00:00:48] [SPEAKER_02]: So surgical menopause, you sort of wake up out of surgery and you can be in menopause that instantly.

[00:00:54] [SPEAKER_02]: I would never forget. I started, I think they said I could start walking around or whatever it was.

[00:00:59] [SPEAKER_02]: I was getting up off the structure and I was up for a few minutes and I looked at my husband.

[00:01:05] [SPEAKER_02]: I looked at the nurse and I was like, like, I feel like I'm burning up all of a sudden

[00:01:08] [SPEAKER_02]: and then it was gone like that and the nurse looked at me and she goes,

[00:01:11] [SPEAKER_02]: that was probably your hot flash and it was gone in an instance.

[00:01:13] [SPEAKER_02]: I was like, oh, this is what it feels like.

[00:01:17] [SPEAKER_04]: Welcome to Menopause and welcome to Overlook. I'm Golda Arthur.

[00:01:22] [SPEAKER_04]: In this episode, Pamela and I talk about surgical menopause, which is brought about by surgery to prevent cancer.

[00:01:30] [SPEAKER_04]: Pamela is the CEO and co-founder of an organization called Tell Every Amazing Lady about Ovarian Cancer or T-E-A-L for short.

[00:01:41] [SPEAKER_04]: Pamela and I are in the same boat because I'm in surgical menopause too since I have a genetic predisposition to cancer.

[00:01:47] [SPEAKER_04]: But we're also completely different cases and you'll hear more about that soon.

[00:01:53] [SPEAKER_04]: And for those longtime listeners, you will remember Pamela from the first season of Overlook.

[00:01:57] [SPEAKER_04]: This time around though, we talk menopause, cancer prevention, and how to talk to a doctor about all of this.

[00:02:06] [SPEAKER_04]: We're at the T-E-L Community Center in Brooklyn, New York on this blinged out fabulous T-E-L couch.

[00:02:13] [SPEAKER_04]: And I'm super excited to get into the conversation about women's health with you today.

[00:02:17] [SPEAKER_04]: Before I had my surgery, you and I had a conversation.

[00:02:22] [SPEAKER_04]: And I remember being so grateful to you for that conversation because we do all have this fear of the unknown as you and I've talked about before.

[00:02:32] [SPEAKER_04]: And that just really studied me talking to you, and I remain grateful for that.

[00:02:37] [SPEAKER_04]: I wanted to talk about prophylactic removal of the ovaries and philopin tubes as well,

[00:02:45] [SPEAKER_04]: because this puts you into menopause, you know, removal of the ovaries puts you into menopause.

[00:02:50] [SPEAKER_04]: And so it's like, click instant menopause there you are, right?

[00:02:54] [SPEAKER_04]: And you and I have both had this experience, even though our family history is a little bit different.

[00:03:00] [SPEAKER_04]: Our genetics are a little bit different.

[00:03:01] [SPEAKER_04]: So let me start there.

[00:03:02] [SPEAKER_04]: Let's start with your genetics and how you realize that this needed to be done for yourself.

[00:03:08] [SPEAKER_02]: Yeah, so I can tell a little bit about my story, but it's also connects to a wide range of the general public where my sister had cancer.

[00:03:17] [SPEAKER_02]: She happened to have a very incancer.

[00:03:20] [SPEAKER_02]: So when she was diagnosed, she had conversations with her doctors and they advised that she got genetic testing done.

[00:03:26] [SPEAKER_02]: Well, she was positive for something called lynch syndrome.

[00:03:28] [SPEAKER_02]: So then they advised, hey, how about you get other people in your family to test for it too because there might be others.

[00:03:35] [SPEAKER_02]: So myself and some other family members got tested.

[00:03:38] [SPEAKER_02]: And I learned that I had lynch syndrome and from that moment on, all of my doctors were telling me you should have your,

[00:03:45] [SPEAKER_02]: you need a hysterectomy and have it as soon as you can.

[00:03:48] [SPEAKER_02]: And I was not ready or prepared for that information, but the sort of point of this story is,

[00:03:54] [SPEAKER_02]: it started out with my sister's diagnosis and it's sort of helping to figure out her cancer treatment,

[00:04:00] [SPEAKER_02]: what kind of chemotherapy that she should have, what course of treatment she should have because that's where science is going

[00:04:05] [SPEAKER_02]: and has really improved in many ways.

[00:04:07] [SPEAKER_02]: So I offered to get tested too because they were trying to also find connections to her treatment.

[00:04:12] [SPEAKER_02]: So then when I got my advice and my answers that I was positive and I should have this surgery done.

[00:04:17] [SPEAKER_02]: I knew and many of you should know, as you do it when it's right for you.

[00:04:23] [SPEAKER_02]: Even though the doctors were telling me you should have a hysterectomy, it was a risk reducing hysterectomy.

[00:04:28] [SPEAKER_02]: It was not something that there was an exact reason besides genetics and a high risk.

[00:04:33] [SPEAKER_02]: It was to reduce my risk and to try to do it around the same age or at least a little before the same age that my sister was diagnosed with her cancer,

[00:04:41] [SPEAKER_02]: which was young in her 40s.

[00:04:43] [SPEAKER_02]: So I waited many years until I was ready and when I decided to have that done, it was a personal choice.

[00:04:50] [SPEAKER_02]: So we highly advise and speak to a genetic counselor who can give you that guidance and support and figure out if genetic testing is even right for you to begin with.

[00:04:59] [SPEAKER_02]: Now we had a strong family history of not only a very cancer but colon cancer as well.

[00:05:05] [SPEAKER_02]: We later found a soft edgio cancer and prostate cancer so we started to see the threads within the family and we learned some of that

[00:05:12] [SPEAKER_02]: in a genetic counseling session. You know, we drew the family tree and it's a very relaxed environment and importance for families to think about if that's appropriate for them.

[00:05:23] [SPEAKER_02]: What is Lynch syndrome? Tell me a little bit more about that.

[00:05:26] [SPEAKER_02]: Sure, so many people might have heard of Baracka that Angelina Jolie actually came out with the New York Times off ed many years ago that she had a family history and she got genetic testing done.

[00:05:38] [SPEAKER_02]: So I mentioned Baracka because Lynch syndrome and Baracka are very similar. They just increase your risk for certain cancers. So Baracka using Angelina Jolie is an example.

[00:05:48] [SPEAKER_02]: She has a strong family history of breast and ovarian cancer. Her mother, her grandmother and her aunt all had ovarian cancer or breast cancer.

[00:05:54] [SPEAKER_02]: And so she decided to get genetic testing done. She found that she has Baracka and her family and she decided to have what's called the new for activity where she removed her ovaries and her philopi and tubes.

[00:06:05] [SPEAKER_02]: And then later on she went up having a mastectomy. So those were prophylactic surgery. She did not have cancer, but she reduced her risk tremendously from these, you know, a surgical procedure.

[00:06:17] [SPEAKER_02]: And so Lynch syndrome is sort of similar. Lynch syndrome actually increases your risk for colon cancer and ovarian cancer and many others just like Baracka as well.

[00:06:25] [SPEAKER_02]: There's just a lot of cancers, but those are sort of like the top tier high numbers.

[00:06:30] [SPEAKER_02]: Uter and cancer is pretty high for Lynch syndrome as well. So when I decided to have my hysterectomy was highly advised not to just remove the ovaries, but also the uterus as well.

[00:06:40] [SPEAKER_02]: And then we went up back to the removing everything because the risk was there.

[00:06:44] [SPEAKER_04]: And so my side of the story is that my genetic mutation is Rad51C, which is fairly rare. I think although I will say when I in the middle of overlooked I got an email from somebody in Australia to say that they also had Rad51C. And it so helps me feel a little bit less rare.

[00:07:03] [SPEAKER_04]: But something you said that I really curious about, you talked about being ready for it. And I know it took me a long time to feel like I was ready for it. What about you? When did you know that you were ready for it? Was it a gradual realization or was it sort of a moment of clarity?

[00:07:22] [SPEAKER_02]: Well, when I found out when I got genetics testing done and they told me that I should have hysterectomy at some point I knew it was going to be when but not if it was you know I kind of talked about it.

[00:07:33] [SPEAKER_02]: When I have the surgery not if I'm going to have the surgery. I knew I would do it knew my heart it was the right thing to do because my sister had died from a very incancer that I should protect myself in the little ways we can because there's no screening tests for a very cancer.

[00:07:45] [SPEAKER_02]: So I did a lot of research and I also not only researched the surgery and the genes that I had and really understanding that but also what would happen after the surgery because you go into surgical menopause.

[00:08:00] [SPEAKER_02]: And so those sort of things were important for me to talk with all of my doctors about night. I have specialists in different areas. I've got other health conditions myself and so needed to make sure that I was doing it at the right time in the right way and how to feel really comfortable with it.

[00:08:15] [SPEAKER_02]: So for anybody you know even considering this, it is a personal choice. It could be advised to you if there's a strong family history but it's really important to just educate yourself about it and feel really comfortable.

[00:08:26] [SPEAKER_04]: It is such a big decision, right? And it's not a decision that you can go back on. So obviously being ready for it is important. I'm thinking back now as I were actually truly ready. I know I said I was ready. I'm not sure that I was.

[00:08:39] [SPEAKER_04]: One thing that makes a big difference is the medical professional that you're working with and I had a truly excellent gynecologic oncologist working with me who made me feel steady every step of the way.

[00:08:56] [SPEAKER_04]: He answered questions I didn't know I even had and that's a big deal for me because I always have a lot of questions. So I think I felt like I was in safe hands and that feeling of safety and like this what is a life decision, what is a body decision is it's just crucial.

[00:09:17] [SPEAKER_02]: Absolutely. Yeah, there were things that I also didn't know. I had a very interesting question pretty close to before surgery that I never even thought about was do I want to keep my cervix or not?

[00:09:28] [SPEAKER_02]: I didn't even know how to think about what hold on a minute now. You know that sort of regroup and figure out what to do with that and I did ultimately decide to take everything.

[00:09:39] [SPEAKER_02]: So case by case and very individually because of my exact gene that I have certain risk factors were there.

[00:09:46] [SPEAKER_02]: I had decided to take everything so it's total full-historic to me. There's different kinds of his directemies too and again, I'm not a doctor. I can't get medical advice but it's important to ask those questions what kind of surgery might be appropriate for someone if you're even at that point of asking about that a lot of other questions could come up.

[00:10:04] [SPEAKER_04]: So let me ask you a personal question. What was it like after it after the surgery, what was the menopause experience like for you?

[00:10:13] [SPEAKER_02]: First of all, you just go through surgery like any surgery. You're very unable to do a lot of things.

[00:10:19] [SPEAKER_02]: It's hard not going to sugarcode it. You must have someone with you and then it just gets better and better from there as you give yourself that space in that time to rest and recover.

[00:10:29] [SPEAKER_02]: You take care of yourself and heal.

[00:10:31] [SPEAKER_02]: You need to give yourself that space in that time to heal and rest and recover any surgeries and really pay attention to the cues of what they tell you when you go home from surgery and do those things.

[00:10:42] [SPEAKER_02]: So surgical menopause, you sort of wake up out of surgery and you can be in menopause that instantly. It could take some time to see symptoms but that is pretty much what could happen.

[00:10:54] [SPEAKER_02]: And you know, we have to remember that there's also a lot of women who've had cancer who have surgical menopause because they had to have their ovaries out or their uterus out or some other organ because of cancer.

[00:11:06] [SPEAKER_02]: So they also are waking up in surgical menopause where so blessed and thankful that we were able to do this prophylactively and as the months went on from my surgery different types of symptoms would arise that I realized was menopause.

[00:11:19] [SPEAKER_02]: It actually my first for me my first description was I literally felt like I had a fever. I was burning up and then it was gone.

[00:11:27] [SPEAKER_02]: I was like, okay, if that's the worst of it wasn't so bad because it does go away quick.

[00:11:31] [SPEAKER_02]: For many, many months after that I had a lot of hot flashes. They didn't really bother me that much. I felt like after other things had been through that was not a big deal.

[00:11:39] [SPEAKER_02]: Some women really can't take the hot flashes and maybe it's the worst for them but I find hot flashes were they come and they go very quickly.

[00:11:46] [SPEAKER_02]: Yeah, and so I worked very closely with my endocrinologist who got me on hormone supplements to figure out to kind of regulate some of my hormones that my body wasn't producing.

[00:11:57] [SPEAKER_04]: So I have a nerdy follow-up question. Why did you choose to see an endocrinologist as a poster guy on a collegeist?

[00:12:04] [SPEAKER_02]: Great question. So I like many women went on the journey of trying to find a doctor who would understand me and listen to me.

[00:12:11] [SPEAKER_02]: And so I stopped when I found a great endocrinologist who really heard me, right? Because they weren't listening.

[00:12:18] [SPEAKER_02]: I went from one doctor to the next to the next to the next and I'm very knowledgeable. I also am out of foundation. I have a lot of resources at my fingertips and I still struggled and went for the second opinion.

[00:12:30] [SPEAKER_02]: I'm in the third opinion, the fourth opinion and finally landed on my amazing underconellologist that has really helped me over the years now too. Like just find what I needed.

[00:12:38] [SPEAKER_04]: I love that story about how you kind of looked for someone who heard you. That's super important.

[00:12:44] [SPEAKER_04]: So for me it's been about a few months since my surgery for you I think a couple of years.

[00:12:50] [SPEAKER_04]: Has it changed how you see your body definitely?

[00:12:55] [SPEAKER_02]: It's like the pre-surgery body in the after-surgery body. I definitely have found that I really need to pay attention to the foods that I eat and exercising is so much more important.

[00:13:06] [SPEAKER_02]: And I don't see that lately. I actually can feel differently if I eat certain things.

[00:13:12] [SPEAKER_02]: Trying to cut back on sugar or something. I actually was finding for a while if I ate certain things my hot flashes would be worse and doing different dietary adjustments made me feel better.

[00:13:24] [SPEAKER_02]: So I worked really hard on that and then also exercise.

[00:13:27] [SPEAKER_02]: So the body is definitely different. You sort of have other symptoms that pop up and you question, is that menopause? Is that something else? What's happening here?

[00:13:36] [SPEAKER_02]: And I think we pay attention more to our body after a surgical menopause because we're not sure.

[00:13:42] [SPEAKER_02]: And menopause is sort of this unknown abyss who a lot of women with so many symptoms and a lot of things just get sure that's probably menopause.

[00:13:50] [SPEAKER_02]: Sure, that's probably menopause. We have to be careful with that because it could be something else.

[00:13:55] [SPEAKER_02]: And we don't want to worry about everything but it is still important to check with your doctor.

[00:13:59] [SPEAKER_04]: So I want to take this back to the fact that so here we are, you and me on the Teal count in your community center in Brooklyn.

[00:14:09] [SPEAKER_04]: And we met going back six years now.

[00:14:12] [SPEAKER_04]: We met going back because I was thinking about making this podcast.

[00:14:16] [SPEAKER_04]: And here we are without our ovaries on the Teal count with my mother having a very incancer in your sister had a very incancer.

[00:14:25] [SPEAKER_04]: So really the fact that we're in surgical menopause as a way to prevent us from getting a very incancer.

[00:14:33] [SPEAKER_04]: And one way, that's kind of a marvel of science.

[00:14:36] [SPEAKER_04]: So isn't it? Because for the longest time we didn't understand this this cancer at all.

[00:14:42] [SPEAKER_04]: We had no foothold in how to try and start to diagnose it and screen it and solve it.

[00:14:49] [SPEAKER_04]: And now we're so much further along.

[00:14:51] [SPEAKER_04]: It's something to be optimistic about.

[00:14:53] [SPEAKER_02]: Yeah, it's definitely exciting.

[00:14:55] [SPEAKER_02]: It's not for everyone though, because we don't have a screening test.

[00:14:59] [SPEAKER_02]: This was really empowering to me and for you where we can't go for an annual exam for a very incancer.

[00:15:05] [SPEAKER_02]: It doesn't exist.

[00:15:06] [SPEAKER_02]: We can do everything we're supposed to look for those science and symptoms.

[00:15:09] [SPEAKER_02]: And we know about our risk factors, but this was a big decision to really reduce our risk.

[00:15:14] [SPEAKER_02]: It's so important that we actually can be empowered by that.

[00:15:17] [SPEAKER_02]: Recients is and it is exciting that it's something that we can you know choose or not to choose.

[00:15:23] [SPEAKER_04]: Another thing I'm excited about now is we're starting to look at the ovaries in a way we've never done before.

[00:15:29] [SPEAKER_04]: We're starting to find that much more information.

[00:15:33] [SPEAKER_04]: We're starting to learn about the connection between the ovaries and brain health and longevity.

[00:15:38] [SPEAKER_04]: I love this focus on the ovaries.

[00:15:40] [SPEAKER_04]: It's long overdue.

[00:15:42] [SPEAKER_04]: I'm not going to complain about that at least with here, at least we're learning about it right now.

[00:15:46] [SPEAKER_04]: Yeah, yeah, it affects so many parts of the body for sure.

[00:15:48] [SPEAKER_04]: Absolutely absolutely.

[00:15:50] [SPEAKER_04]: Well, Pamela, thank you so much again for inviting me down to the the Teele community center here in Brooklyn.

[00:15:55] [SPEAKER_04]: Such a great space.

[00:15:57] [SPEAKER_04]: I always like coming down here and thank you so much for your support as well.

[00:16:01] [SPEAKER_04]: I was so pleased when I was able to talk to you before I headed into my surgery was such a great comfort.

[00:16:08] [SPEAKER_04]: And I would love to continue the conversation about women's health in any way that we can.

[00:16:13] [SPEAKER_02]: Great, thank you.

[00:16:16] [SPEAKER_04]: And now we're going to hear from three listeners who emailed overlooked sent in their voice memos and shared their personal stories.

[00:16:24] [SPEAKER_04]: Thank you Laura, Jen and Evelyn. We're all wishing you the best of health.

[00:16:31] [SPEAKER_03]: Hello, my name is Laura Davis, and I'm here to share my ovarian cancer journey.

[00:16:37] [SPEAKER_03]: It starts off in a GI doctor's office.

[00:16:41] [SPEAKER_03]: I'm waiting for the results of a CT scan.

[00:16:44] [SPEAKER_03]: I picked up the report from the imaging center earlier that morning and began Googling some of the medical terms, which all seemed to point to cancer.

[00:16:55] [SPEAKER_03]: So I had a little heads up going into the appointment.

[00:16:59] [SPEAKER_03]: The doctor walks in and tells me, I don't have good news for you.

[00:17:06] [SPEAKER_03]: And she lets, you know, she will be referring me to a gynecologist oncologist.

[00:17:13] [SPEAKER_03]: I asked the question, will that doctor do a biopsy to determine if indeed this is cancer?

[00:17:20] [SPEAKER_03]: She looks at me with sad eyes and lets me know that it has spread, and it is most likely what it is.

[00:17:33] [SPEAKER_03]: So I go to the oncologist appointment and in my head, I have a plan.

[00:17:38] [SPEAKER_03]: We will go in, so do surgery. She will remove the tumors and I will be relieved of the pain and discomfort and constipation that I've been having for the last two years.

[00:17:50] [SPEAKER_03]: Several months.

[00:17:54] [SPEAKER_03]: But she informs me that there's another plan, a different plan to start with chemotherapy first, so that we can shrink the cancer to a manageable size.

[00:18:06] [SPEAKER_03]: So when she does go in for surgery, she is able to get at least 98% of the cancer because that is going to give me the best diagnosis.

[00:18:19] [SPEAKER_03]: So two days later, I'm in the hospital. We are doing a biopsy and exploratory laparoscopy to ensure that the imaging from the CT scan is exactly what's going on inside which it was.

[00:18:36] [SPEAKER_03]: Two days later, that Friday I'm still in the hospital and starting my first chemotherapy.

[00:18:41] [SPEAKER_03]: I do two more rounds of chemotherapy for a total of three rounds and I'm waiting on a CT scan to determine if those therapies have shrunk the cancer to a manageable size so that we can go ahead with the surgery.

[00:19:01] [SPEAKER_01]: My name is Jennifer and I am about to turn 43 when I was diagnosed in February, 2023.

[00:19:12] [SPEAKER_01]: I was 41 years old really living the best life I could live. I was very happy.

[00:19:19] [SPEAKER_01]: I was running a lot. I completed a half marathon two months before I was diagnosed so I didn't expect to be sick.

[00:19:29] [SPEAKER_01]: So when I ran my half marathon, it was the worst race I've ever ran. I was very sick. So I knew something was up. I scheduled it with my primary. He initially thought it was a hernia which ultimately turned out to be stage 3 a a big reunion cancer.

[00:19:47] [SPEAKER_01]: I had a complete his direct to me. They took everything including part of the left node. I did chemo small doses weekly for 18 weeks and then I was clear for a year. I'm currently I'm currently in recurrence and I'm about to get my third treatment.

[00:20:06] [SPEAKER_01]: Something that I feel very passionate about that I've noticed is that yes, there's not a lot of literature on the survivorship of the very cancer.

[00:20:17] [SPEAKER_01]: I feel like the statistics are very skewed for example a lot of the support groups and stuff it's divided by if you were under 50 or if you're over 50.

[00:20:27] [SPEAKER_01]: But when it comes to the statistics and that data, it's not really divided up very well. So I think that that's a problem.

[00:20:37] [SPEAKER_01]: And that scares a lot of us. We see those statistics and we freak out. Another thing as I have noticed is that there's a lot of misinformation.

[00:20:48] [SPEAKER_01]: For example, I had my original symptom was a swollen lymph node which is where one of the tumors was and they took all but the lymphatic.

[00:21:02] [SPEAKER_01]: I'm not really sure what that means. They've not tried to explain that to me. I've asked how many lymph nodules I have there they don't know. So there's this lack of information that's happening there.

[00:21:14] [SPEAKER_01]: I love this podcast. I feel heard. I feel like we're being represented. I would like to see more points of view from those of us that are younger.

[00:21:29] [SPEAKER_01]: Luckily, I didn't have kids. I had decided not to have kids because I went into menabause at 41 because of surgery.

[00:21:38] [SPEAKER_01]: There's a lot of us out here that are looking in saying yes I have a very enchancer and I do identify with those experiences but I'm young.

[00:21:48] [SPEAKER_01]: I'm dealing with things that young people deal with still having to work.

[00:21:53] [SPEAKER_01]: Having needing to work because you need health insurance but then having to miss how much work because of the cancer.

[00:22:01] [SPEAKER_01]: So it would be nice to have some of that representation going both in your wonderful podcast but also in the medical community.

[00:22:11] [SPEAKER_01]: I really appreciate you doing what you're doing.

[00:22:15] [SPEAKER_00]: Hello, my name is Evelyn Molina. I am mother of two designer and I live in New Jersey.

[00:22:22] [SPEAKER_00]: Here I am today to share with you my story because I want to create awareness of what adrenal cortical carcinoma is.

[00:22:31] [SPEAKER_00]: Two years ago after the unexpected loss of my mother due to a massive heart attack, I began to feel strange.

[00:22:38] [SPEAKER_00]: I began to feel chest pain, developed high blood pressure.

[00:22:42] [SPEAKER_00]: I began to gain weight and my face got really swollen. I thought I was also developing a heart condition.

[00:22:50] [SPEAKER_00]: So I went to see a doctor. He checked my cortisol level and found it was really really high.

[00:22:56] [SPEAKER_00]: It was caused by a tumor found in one of my adrenal glands.

[00:23:01] [SPEAKER_00]: So to treat it, I had surgery which was a success. I was cured from cushing syndrome and I was really really happy.

[00:23:10] [SPEAKER_00]: Also we needed to wait for the results from pathology.

[00:23:15] [SPEAKER_00]: Two weeks later my surgeon called me to read the results.

[00:23:20] [SPEAKER_00]: It was positive for stage 3 adrenal cortical carcinoma.

[00:23:24] [SPEAKER_00]: A very rare and aggressive type of cancer that affects one in a million people.

[00:23:32] [SPEAKER_00]: What does this cancer do in your body? The glands produce an uncontrolled amount of cortisol in your body, which changes the way several metabolic processes work.

[00:23:44] [SPEAKER_00]: And that's what affects you. For us, patients, what does this mean?

[00:23:50] [SPEAKER_00]: We only have one medicine to be treated with. Also we do not have enough specialists.

[00:23:58] [SPEAKER_00]: Some doctors have only seen one patient with this condition in their whole professional life.

[00:24:04] [SPEAKER_00]: And the other complicated thing is that this is a silent cancer. Many times when the doctors find it and because it's so rare,

[00:24:16] [SPEAKER_00]: it takes them a long time to really find what is going on.

[00:24:21] [SPEAKER_00]: And then when they find it, it has already progressed to an advanced stage.

[00:24:26] [SPEAKER_00]: I also want to emphasize one thing which is very surprising.

[00:24:32] [SPEAKER_00]: There are more female patients than male. Still doctors do not know why.

[00:24:40] [SPEAKER_00]: I just want to leave you with this message. Please listen to your body. In this case, I was my only advocate.

[00:24:48] [SPEAKER_00]: Nobody knows how I feel better than myself because nobody else understands it.

[00:24:56] [SPEAKER_00]: Thank you so much today for your time. Please take care and don't forget.

[00:25:01] [SPEAKER_00]: Learn to read your body.

[00:25:11] [SPEAKER_04]: Overlooked is written and produced by me, Golda Arthur. Jessica Martinez-Ales is our producer.

[00:25:17] [SPEAKER_04]: We're building a community around women's health so that no one is overlooked.

[00:25:21] [SPEAKER_04]: If you'd like to be part of it, sign up for the newsletter at overlookedpod.com

[00:25:25] [SPEAKER_04]: And you can get in touch with us by emailing hello at overlookedpod.com

[00:25:30] [SPEAKER_04]: What you hear and read on overlooked is for general information purposes only.

[00:25:36] [SPEAKER_04]: And represents the opinions of the host and the guests.

[00:25:39] [SPEAKER_04]: The content on the podcast and website should not be taken as medical advice.

[00:25:44] [SPEAKER_04]: Every person's body is unique, so please consult your healthcare professional for any medical questions that may arise.

[00:25:51] [SPEAKER_04]: Thanks for listening.