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Test Those Breasts ™️
This podcast by Jamie Vaughn is a deep-dive discussion on a myriad of breast cancer topics, such as early detection, the initial shock of diagnosis, testing/scans, treatment, loss of hair, caregiving, surgery, emotional support, and advocacy.
These episodes will include breast cancer survivors, thrivers, caregivers, surgeons, oncologists, therapists, and other specialists who can speak to many different topics.
Disclaimer: I am not a doctor and not all information in this podcast comes from qualified health care providers, therefore does not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers.
Test Those Breasts ™️
Episode 69: Gail Menasco's Fight for Fair Healthcare & Personal Victory over Cancer
Imagine receiving a life-altering diagnosis of breast cancer at the age of 37. Gail Menasco, owner of "Menasco Consulting" and a fierce advocate for healthcare reform and health equity, shares her compelling journey from being an adventurous mom and business owner to navigating the shockwaves of a cancer diagnosis. Through her personal story, Gail underscores the critical importance of regular self-checks and the whirlwind that follows the initial discovery of a lump. She opens up about her mission to support others through the maze of information, insurance hurdles, and treatment decisions, offering invaluable insights for anyone facing similar challenges.
We delve into the intricate case of a 38-year-old woman diagnosed with high-grade DCIS, shedding light on the unique difficulties posed by being ER/PR negative. This narrative takes us through the emotional and logistical hurdles of deciding between mastectomy and radiation, and the painstaking search for a skilled surgeon for DIEP flap reconstruction. Her story is a testament to resilience and determination, highlighting the frustrating experiences with local surgeons and the eventual decision to seek out-of-state options. This episode provides a raw look at the arduous path of dealing with a rare and aggressive form of DCIS.
Gail's journey through the complexities of health insurance and employment changes reveals her strategic thinking and fierce advocacy.
Contact Gail:
Menasco Consulting Website
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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .
Hello friends, welcome back to the Test those Breasts podcast. I am your host, jamie Vaughn. I'm a retired teacher of 20 years and a breast cancer thriver turned staunch, unapologetic, loud supporter and advocate for others, bringing education and awareness through a myriad of medical experts, therapists, caregivers and other survivors. A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, and other survivors A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, especially on Dr Google. I get it. I'm not a doctor and I know how important it is to uncover accurate information, which is my ongoing mission through my nonprofit. The podcast includes personal stories and opinions from breast cancer survivors and professional physicians, providing the most up-to-date information. At the time of recording Evidence, research and practices are always changing, so please check the date of the recording and always refer to your medical professionals for the most up-to-date information. I hope you find this podcast a source of inspiration and support from my guests. Their contact information is in the show notes, so please feel free to reach out to them. We have an enormous breast cancer community ready to support you in so many ways. Now let's listen to the next episode of Test those Breasts. Well, hey, friends, welcome back to this episode of Test those Breasts.
Speaker 1:I am your host, jamie Vaughn, and today I am so excited to have my I consider to be one of my bestie breasty friends from Oregon.
Speaker 1:Actually, her name is Gail Manasco, and Gail owns Manasco Consulting, a search engine optimization agency, and in her free time she's a mom, wife, patient advocate, working to make federal healthcare reform and increase health equity. Gail and I actually met through our surgeon, dr Cabling, at Center for Restorative Breast Surgery. I was actually in recovery for my second surgery back in December when Dr Cabling came in to check on me and mentioned Gail's name and that he had mentioned my name to Gail. So from there we've just been in touch. We've had multiple conversations about our experience at Center for Restorative Breast Surgery and, in particular, with Dr Cabling. We've also talked about insurance and just healthcare access and the reforms and things like that. And so, gail, thank you for being on this show, because I just think that you are a wealth of knowledge and I appreciate that you are here to help bring that awareness and help shorten the learning curve for other people. How are you doing today?
Speaker 2:I am doing great and I just want to thank you. Thank you for putting in all of the time, the resource, the energy, everything, your heart and soul into providing these types of resources to women and using your experience as a teaching experience to dig further into this.
Speaker 1:Well, it is thoroughly my pleasure. I knew right away well, not right away, but shortly after I was deemed cancer free that I needed to do something to give back to the breast cancer community because of the lack of knowledge I had and I fancied myself for having some pretty good knowledge before breast cancer because I just knew a lot of people who had had it and just things like that. But there was so much I didn't know and most women and men kind of find themselves in the same boat where they are just overwhelmed with so much information, from insurance to treatments, to the kind of surgery that they can or can't or have or what's available in their area. So I really thank you for recognizing that and I thank you too for putting in the effort to help people as well. I want to start out with helping my audience understand who Gail was before your breast cancer diagnosis Sure absolutely so.
Speaker 2:Before breast cancer, I was being a mom, owner of my own business. I mean, I'm still doing that today. I didn't like not become a mom, but I've always been an adventurer. Back in my 20s I was a skydiver. I've been into scuba diving for a long time, but just breast cancer wasn't even on my radar, it just was not. I had a seven-year-old when I was diagnosed, or maybe eight, seven, eight, just right on that cusp, but it was just not in the cards, it was not in my family. I had no genetic. I mean, I did do genetic testing later, but I had no genetic mutations.
Speaker 2:I always thought that you got breast cancer because maybe your mom or your grandmother had it. That's just what I thought and what I thought was completely wrong. I was 37 years old when I just did a random self-check. It was not something I did regularly. I should have been doing them regularly, but I didn't. I went to my annual doctor's appointment and just got them done there. But I felt a lump when I was 37. And so I immediately got it checked out. 48 hours later I had my very first mammogram. I went into that mammogram and they said oh, it's fine, it's benign, don't worry about it. And I'm like great, I knew my mom had some cysts. I wasn't worried about it, I just assumed it's a cyst. And as I'm walking out the door, the lady behind the desk mentions hey, we went to see you back in six months and I just thought they told every single woman that who had a lump.
Speaker 2:I had no idea about a BI-RAD score. It was my very first mammogram and ultrasound and so there's a BI-RAD score where if you score like one to two, it's a very low chance of having cancer come back in a year. But if you are a BI-RAD of three, they want a six monthmonth follow-up and the risk is slightly more elevated than like a one or two. And then a four that's where it's suspicious needs to be biopsied. There's like four A, but not all of them do that. It depends on the radiologist.
Speaker 2:But I was a BI-RAD of three and didn't know it. I found that out much later when I went back and read the report. I didn't even know you could read the reports. I mean, I was so clueless when it came to this and I've learned so much. So the thing is I wasn't worried about it. They said to come back in six months I got a very large bill for this diagnostic imaging. I was not excited to just go back and spend this money for diagnostic imaging. I always had high deductible health plans, so I would have to wait to reach my out-of-pocket maximum before insurance ever kicked in, and so I just got this huge bill.
Speaker 2:But then six months later I wound up in the hospital due to debilitating back pain and I lost feeling in my feet from this insane sciatica that kicked in and I've never had sciatica this bad. But it left me hospitalized for five days and because of that I get my out-of-pocket maximum on my plan and I'm like, oh, I need to go get my breast checked. I can now get a free mammogram, you know, and then I won't have to do it until I'm 40. And then it will just be free. That's how I thought. I wasn't worried about it.
Speaker 2:So I went back nine months later, hopping and skipping into that appointment. The tech went and found a radiologist and had him come and sit next to me and, like chat, I'm like, well, this is different, you know. It just didn't happen last time. So they saw an area that they needed a biopsy and I mean I was just in shock, like absolute shock. Then I just started deep diving of how many of these actually are malignant. I was freaked out and I came back for that biopsy and it came back as a weird pathology. I had memorized what came up on the notes. I made a patient portal. I read my reports. I chat GPT to every single word. Patient portal I read my reports, I chat GPT to every single word.
Speaker 2:And that's when they told me I needed an excisional biopsy to get more information that they caught the edge of what they found. So that sent me into MRIs and right guided biopsies of other spots. And immediately they're like what surgeon do you want to use? And I'm like what surgeon do I need? And they're like a breast surgeon. You know, I was not immediately referred to oncology, I was just immediately referred to a breast surgeon. And it was so confusing I had to come up with a name. I'm calling friends to be like what's a good breast surgeon in town? I don't know. And so I gave them a name, got in with this breast surgeon and then I had already gone down so many rabbit holes on like do we need to talk mastectomy or treatment? And she's like no, right now we're talking atypia, that looks like it's cancer, but we need more tissue. So nothing is on the table right now. We have to get this taken out. I'm like, okay.
Speaker 2:So it took me seven weeks from that first biopsy to getting the pathology from my excisional biopsy. Seven weeks, seven weeks. And so during that seven weeks I rabbit hole. I didn't know what I had. I didn't know if it was pure atypia. I didn't know if it was going to be a cancer diagnosis. I didn't know what I had. I didn't know if it was pure atypia. I didn't know if it was going to be a cancer diagnosis. I didn't know anything. So I spent hours watching pathologists look at samples. I watched breast cancer lectures. I watched whatever I could so I could understand my final pathology when it came in. And finally that final pathology came into my chart and I sat there and I read it with ease. And then my breast surgeon called me 30 minutes later and I'm like I'm already ahead of you. We're going back and forth.
Speaker 2:And I was diagnosed with high grade hormonal negative DCIS, so the earliest stage of breast cancer that exists. Fantastic for that, but for me that was upstage from this atypia. So now that meant there's now things on the table. Essentially she's like let's meet in person in a week, let's sit on this. And I knew I was hormonal negative. I knew I was ER negative, I knew I wouldn't be eligible for tamoxifen. But something my breast surgeon just kept on saying on the phone was under 40, under 40, under 40. Apparently this is according to her that radiation is not recommended if you're under 40, if you have another option, if you have another option. And so we could have done lumpectomy and radiation. But then I wouldn't have the tool set of tamoxifen because I was hormonal negative.
Speaker 2:Tamoxifen is a hormone blocker, right, but I didn't need a hormone blocker because I was 0%. I know mine also stained positive for CK56, which when you look that up, it looks like potentially a triple negative. But they don't test for HER2 in DCIS. So all I knew was I was double negative and I was ER and PR negative. The high-grade DCIS has a higher chance of coming back as invasive as a higher recurrence rate, and so if this came back as invasive, I would either be triple negative or I would be HER2. Either would result in chemo, which I was very much trying to avoid.
Speaker 2:So my case went to the tumor board. They all discussed it, which is weird. Most DCIS is hormone positive but mine was high grade and hormonal negative. With comedonecrosis there was the dead cancer cells in the middle, meaning it was growing very quickly, and mine was located within a palpable mass. So it was within a complexus, which is what I was feeling.
Speaker 2:But many times DCRS can't be felt. It has to be seen typically on imaging. Many times it'll show up as like a cluster of calcifications in a certain pattern. So I was just a weird case. I was a weird case. I had very dense breast tissue that were hard to see and I had a patch. I had a lot of complex cysts going on.
Speaker 2:I knew if I did go the radiation route that I would be in for imaging all the time. I would be labeled and then just waiting to see if this thing came back as invasive. But my case went to the tumor board. They talked about it, especially due to my age. I was 38 when diagnosed. They recommended mastectomy in lieu of radiation. They said that would bring down my recurrence rate since I didn't have the extra tool set of taking a hormone blocker. And then also, if you do radiation and then you have a recurrence. You can't radiate in that same spot again. And now mastectomy is maybe on the table. I know it's different. Sometimes they can do a targeted radiation in a different area and I know it restricts your reconstruction options or it makes it more complicated if you're working with radiated skin and being under 40 didn't want to do the radiation, so I was looking at doing a double mastectomy.
Speaker 2:I mean, this was just not in my bingo card for 2023. But here I'm being told I need to do a mastectomy and let's get this on the books like now and now. I'm like, wait, I just rabbit holed on this, like atypia and pathology. I did not rabbit hole on reconstruction. I didn't even think mastectomy was even going to be a thing. I just assumed I'd be dealing with radiation or if it were further progress chemo, and mine just happened to be in that earliest stage. I didn't have to do chemo. I'm like, oh no, I didn't do my homework on this, but I had a neighbor who had reconstructed using her own tissue 20 years ago which I believe was probably a tram flap. Then she didn't know the name, but it has to be it because it was taken from her belly area.
Speaker 2:So I asked my breast surgeon if I could reconstruct using my own tissue. She sent me the name of a local plastic surgeon to go meet with that she works with and I met with him to do a deep flap consultation. In our deep flap consultation he spent 45 minutes trying to sell me on implants. I did not want implants. So then the last 15 minutes of it he explained it would be a 15-hour surgery, that I would have a 20% chance of bulge, that I asked him his success rate and he refused to answer his success rate. He only quoted me the national average. He told me I would be hunched over on a walker for weeks.
Speaker 1:Everything that came out of his mouth was- Screaming that he didn't have the experience and the skill set to actually do it. Yeah.
Speaker 2:Right, and you don't know what you don't know, right. You don't know if the average surgery across the country is 15 hours.
Speaker 1:Yeah.
Speaker 2:I hadn't gotten multiple opinions and this was the guy this was the only guy in Oregon. He works with another surgeon in Oregon and they do this together once a month. They do one in Bend and then the next month they do one in Portland together. So they're doing the surgery once a month. I was still signed up. I was still signed up trying to get a surgery date because there were no other options in Oregon. The big hospital in Oregon is OHSU. They didn't have a deep flap surgeon. They told me they were going to be getting one, but I looked them up and they were still in residency and that also didn't feel great either. And it just didn't even occur to me yet that I could travel for this surgery. I thought traveling for surgery was for the Hollywood elite, it was for the A-listers. I'm like, well, this is my option, I could do it here. I could do it 15 minutes down the road, I'll get a walker.
Speaker 2:And then he sent me in for a CTA scan. He said the CTA scan would determine eligibility. I'm like, huh, okay, all right, scan would determine eligibility. I'm like, huh, okay, all right, I'll do this scan. And then he calls me. This is weeks later. It took him weeks just to put in the orders for the CTA scan. Just everything felt like it was taking forever. But then he called me and he said due to your anatomy I will need to take muscle. We're going to be doing something like an MS2 take muscle. We're going to be doing something like an MS2 on you. And I'm like huh.
Speaker 2:And then I thought I heard him say tram in the conversation and I was so confused. I was so confused and so then I forgot the letters and the numbers. He called me off guard when he called me and I didn't write it down. So then I'm trying to rabbit hole of like what is being done to me? I finally called his office back and I said what were the letters and numbers of the tram flap that you're going to do on me?
Speaker 2:And he gets on the phone and he says you are getting a deep flap D-I-E-P. He spelled it out for me and I said no, you had mentioned tram in there and you had mentioned some letters and numbers. He said you are going to be getting an MS2 deep. And I'm like searching this and I cannot find anything online about an MS2 deep, but there is an MS2 tram flap. I keep on asking him I'm like do you mean an MS2 tram? And then he finally says what do you have against tram flaps? I did not want a tram, I wanted a deep. And on this phone call I just up and canceled my surgery with him.
Speaker 2:So he was trying to sell it to you as if it was a deep yes, because it would have been a deep on one side and on the other side, where I had multiple nonlinear perforators, he was going to do an MS tram and take muscle in between my blood vessels in order to harvest them, and that's where that increases my rate of having a permanent bulge. You know now you're taking muscle that could impact your core strength. You don't just grow back muscle and I'm devastated of what just happened here. I take to Facebook groups. There's multiple deep groups and I am going in there and I am active and I am asking the questions. I'm like, due to my anatomy, they have to take muscle. Is there another way? Is there something else that's out there? And people are just responding with deep chin and take muscle and I'm like, I know, but this is what's being said to me due to my anatomy, what else is out there? And it took me multiple times of asking this question before one random woman mentioned Apex, apex flap. And I'm like, huh, okay, and I Googled Apex flap and I found the Center for Restorative Breast Surgery's website it talked about due to people's anatomy, the surgeons are taking muscle. And I'm like, oh, that's me, this is me. And they said it's never necessary to take muscle with the apex flap. And then I'm looking up the paper, I'm looking at the chart, I'm watching the video. I mean I'm now rabbit holing down apex. So if you have multiple nonlinear perforators, which is a very common anatomy to have I've asked the center how common it is and they went back and so one surgeon, I think, did it about 25% of the time. Cabling's numbers were much higher I think he was maybe close to 40% Don't completely quote me on that, but it was a higher number where I'm like okay, this isn't just a 1% of women type of thing have this anatomy. If you have multiple nonlinear perforators, if the surgeon doesn't have the apex skill set, many times that surgeon is converting to a muscle sparing tram and muscle sparing. They say muscle sparing but they're taking muscle because it was better than the original tram where they took a lot of muscle. And then they're using mesh with like an artificial mesh placement to help prevent against hernia or bulge.
Speaker 2:So I learned about this but my insurance did not want to work there. I also saw there was another place offering this was PRMA in Texas. I thought I had Blue Cross, blue Shield, I had an EPO plan, but for some reason I thought it would work in Texas. At this time I did not understand how insurance worked. I knew that Blue Cross, blue Shield, was out of network with the center, but I went and overnighted my scan to PRMA because I knew that they worked with Blue Cross. To PRMA because I knew that they worked with Blue Cross, I had to pay for a surgeon consult there maybe like 200, maybe 250 or something like that.
Speaker 2:I got assigned to a surgeon there. She looked at my CTA scan and I'm just expecting her to say that we can do apex on you. She told me that she would need to take muscle and she didn't know how much muscle that she would need to take and she would be using mesh. I was shocked. I was beyond shocked. They talk about Apex on their site, but just because it's on their website doesn't mean that all the surgeons there are skilled in that, and I am devastated.
Speaker 2:So I call my insurance and I find out that my insurance only worked in Oregon, washington, idaho and Utah. So I got a list of every single deep surgeon in these four states and I started calling and I said, oh, if you have multiple nonlinear perforators, are you skilled in the Apex technique and do you use mesh perforators? Are you skilled in the apex technique and do you use mesh? Is it very common for you to use mesh? Essentially everybody that I called wasn't skilled in the apex flap and I realized I needed to figure this out and so I sent my scan to New Orleans. There I met with this nurse and she was adamant that they could do it, and I'm like no, I need to speak to a surgeon. They paired me with Dr Kameleon. He got on the phone and he said I can do what you need me to do. I can do it. I'm not going to take your muscle, we're not going to use mesh and I can do this. I'm like and that's what I've been needing to hear. I cried tears of joy when he told me that. But I knew my insurance didn't work there so I had to figure it out. I'm on the IRS website trying to figure out how to get special enrollment. I'm thinking about changing to a C-Corp to open up a QSE HRA. I am going down all the rabbit holes trying to figure out how I can change insurance.
Speaker 2:I work with many different agencies and one of them just kind of heard me rabbit holing and they're like Gail, we've always wanted you to be an employee. They're like do you want to become an employee? Do you want to become the director of SEO? They're like we've been wanting this forever. They're like how we work together will change. But yes, you know. And I'm like when do your benefits kick in? And they said it starts the first of the following month. And they sent me an offer letter. Wow, within a couple of days and I signed on new employment and our relationship changed with how we work together and timesheets. But, yeah, I took on new employment and our relationship changed with how we work together and timesheets. But, yeah, I took on new employment. Now I'd already hit my out-of-pocket maximum, so I'm starting over in September with new insurance. So those out-of-pocket maximums start over. But I had new insurance those Blue Cross, blue Shield, ppo with out-of-network benefits, which is what I needed.
Speaker 1:That's what I had.
Speaker 2:Yeah, yeah, because the center in New Orleans is out-of-network with Blue Cross. But they were the only ones that could do the surgery in my timeframe with a skill set. I submitted my insurance to them. They got me a surgery date within weeks, like two weeks later. They were get you in Now, if I was considered active cancer because I'm doing this in lieu of radiation and they got me in quickly, I mean it was a whirlwind, it was an absolute whirlwind. But Dr Kaeabling, he did the surgery he said he would do. He took a picture during surgery to show that my muscle was untouched and I have pictures. He retained my muscle. He did the apex, which is where he severs the blood vessel behind the muscle and brings it around, ties it together. Maybe I'm using the wrong words here. There might be certain things I'm picturing it.
Speaker 2:And then they move it up to your chest, leaving your muscle untouched, no mesh, and that is what I wanted. That was my goal, and I did it. I got the surgery I needed and a new job.
Speaker 1:I want to ask you, because we started this with, who was Gail before breast cancer? What is it about Gail that afforded you the wherewithal, the skill set, the determination to be able to advocate for yourself like this? Because you had mentioned that you didn't know a lot about breast cancer. It wasn't even on your radar, but you were forced into learning more and going into these rabbit holes and finding out more, how to read your scans and all of that. Who were you to be able to be like that? It's like not everyone's like that. There are some people who just don't advocate for themselves. They just kind of go along with whatever. But there's something with Gail that's been there to make you that way.
Speaker 2:I believe everything is figureoutable. There's always a way. There might be a window, it might be a door. Everything is figureoutable. No-transcript figure it out. If I hear something is impossible, then I don't believe that it's impossible. I think everything you can figure it out. There is a way. You just don't know it yet I just kept on holding on to that belief.
Speaker 1:I think that is one of the reasons that I was so drawn to you. Thank you, Dr Cabling, for connecting us, but I do think that that is one of the biggest reasons I'm so connected to you is because I'm the same way. I'm a lifelong learner. I was an educator for 20 years. I'm still an educator, in a different capacity. But I'm also that type of person where I don't mind sitting and listening to lectures and reading and trying to figure out how I can do something.
Speaker 1:That is very similar to my story in that I knew that I did not want implants, as far as just the full reconstruction implants, and that's all we had available in this area. But luckily I had a few people separate people throw into my ear. Hey, I know this person who had this surgery where they use the tissue, and they went to this place called Center for Restorative Breast Surgery, and then the other person was in somewhere, I think, in Washington DC area. So I knew that there was something out there like that. But when I asked my surgeon, she said she didn't know much about it. I don't think. I believe that. I think she's heard of it, but she didn't know much about it. She just didn't know anyone in this area that did it. She just didn't know anyone in this area that did it.
Speaker 1:And even if it's on the menu of a plastic surgeon, those questions are super duper important to ask to find the perfect surgeon to do that type of very, very complex surgery. So luckily I was able to get the strength to cancel my first of all to get a consult from Center for Restorative Breast Surgery. Then to convince my husband because we went rounds about it, he was not happy that I was even looking into traveling somewhere. But then also to have the strength enough to call up my surgeon here and cancel my appointment and go on faith that this place in New Orleans was going to be the best option for me. And luckily I had the wherewithal to do that. And I really truly believe that it was the woman that I was before breast cancer that was able to have that strength to do that.
Speaker 1:And I just find so much inspiration in people and women like you. And now you have moved in to help other people with understanding insurance, understanding the different types of surgery and what kind of questions to ask different surgeons. Do they have the skillset to do the APACs? So I'm excited at the fact that we get to collaborate that way and you have been helping me with a document to put on the Test, those Breasts website to be able to help educate people for when they are in the same situation where they get breast cancer and they're blown away by all of the mounds of overwhelming information. And we are in this together where we are trying to help shorten that learning curve so that people can move their own breast cancer journey with a little more ease, hopefully. So insurance I do want to start with asking you one thing what is it that people need to know about their insurance when they are?
Speaker 1:looking for surgeons.
Speaker 2:Okay, I hate this for America is that when I'm talking to women and trying to figure out what options could be available to them, I am just a volunteer patient advocate and by evening I am all over different Facebook groups and helping women navigate this the first thing I say is what's your insurance? And I hate that. That's my question. I hate that insurance dictates the type of care that you can receive and we have a health inequity problem in this country. But ideally you have a PPO plan without of-of-network benefits and you don't have any unreasonable limitations on your out-of-network benefits. Now, limitation, you might be like well, what's a limitation? I'm going to ask that question for you. In every single insurance plan there's a grid you can download. It's your plan details and there's kind of different things for your in-network and there's different limitations. At the very top we'll say like limitations, exclusions to the policy. What would be an unfair limitation? On an out-of-network hospital? There could be a limitation where your insurance will only pay them $3,000 a day. These hospitals only pay them $3,000 a day. These hospitals don't charge $3,000 a day. So what happens is if you have a limitation like that on an out-of-network surgeon or an out-of-network hospital, then if you end up getting to go there, your insurance or that hospital will actually balance bill you the difference. So let's say that cost that hospital stay was $100,000. Your insurance would only pay nine. Then the remainder of that can be balance billed back to you and that would be discussed. There's laws against surprise billing but that would be the only way that you could go there. Now you're looking at settling out on a cash price to go to said hospital, which might be, I don't know, $60,000, $70,000, $80,000. It would depend. I'm just throwing out random numbers. But having a PPO plan without a network of benefits, without limitations, that null the benefits of the policy. So it's a very long answer there, but that's what you want.
Speaker 2:There's different types of insurances you may have heard of like HMO, which HMO is the most restrictive HMOs. You typically cannot leave the state that you're in and you have no out-of-network benefits and it's very hard. You've got to get different approvals to go to different doctors. I've had a lawyer that I've been helping in Northern California who has an HMO plan and she really needed an MRI. But the place where she could get in for her MRI she just got diagnosed they didn't work with her HMO plan and they were going to charge her $5,000 for an MRI. Oh my gosh, she had to wait. She had to add to her timeline to wait in order to go get an MRI that worked with her insurance.
Speaker 2:With active cancer, hmos are the most restrictive, but what has become very popular on the marketplace are these EPO plans. Blue Cross, blue Shield used to offer a PPO plan in my area. They switched what they were offering to EPO, which is maybe not as common of a term. It's essentially like an exclusive provider network, so it limits your area of care For the Pacific Northwest or here. The EPO plans work in Oregon, washington, idaho and Utah.
Speaker 2:Now, if you have a wreck, if you have an emergency outside that area, it works, but if you are trying to get a planned surgery, cancer is not considered an emergency.
Speaker 2:If you're trying to have a planned surgery or planned treatment, then it won't work. You're going to be billed the full amount, which could take your home if you're trying to leave that area. And the problem with offering these EPOs, especially in the Pacific Northwest we don't have access to a Mayo Clinic, md Anderson, a John Hopkins, and so if you have an EPO plan and you get a type of cancer where you need to seek even better expertise for your cancer care. You can't go there. You have to go to the cancer centers that you have access to, or wait until open enrollment to switch insurance. And maybe you got diagnosed in February and you can't wait until the next January to go, but what's happening is that so you need a PPO plan with out-of-network benefits. What I've been doing during open enrollment is I've been helping women all across the country. Just look at what plans are available to them, and what I'm seeing is that many of them don't have access to PPO plans without network benefits. It's not even an option anymore, no, it's HMOs and EPOs.
Speaker 2:Now, if they don't have a surgeon within a certain radius, they can work to get a single case agreement. Surgeon within a certain radius, they can work to get a single case agreement. They have a more restrictive plan. But many times those single case agreements get denied and a lot of times these women have active cancer and they've got to figure out their surgery. And I want to do my reconstruction. At the same time I want a skin sparing mastectomy. I didn't want to do the delayed reconstruction. I thought I was afforded that right through the 1998 Women's Health and Cancer Act, right, but it's limiting to the type of insurance.
Speaker 2:So what you'll see is what's being offered for PPO plans. They're kind of dubbed these little marketing terms like PPO Advantage, ppo Options, and what they're doing is they're removing the out-of-network benefits. So PPO will open up the entire country to you where you can go and network. So if it's Blue Cross, blue Shield per se, you could then go to Alabama, you could go to New York, you can go to Texas to a place that accepts Blue Cross, blue Shield with like a PPO option or PPO advantage. But the Center for Restorative Breast Surgery, which was my option, blue Cross, blue Shield, at this time is out of network, and so if you have one of these plans that don't have out-of-network benefits, it won't work. It just won't work there. The 1998 Women's Health and Cancer Act, rightite doesn't just magically give you insurance benefits. You still have to pay your out-of-pocket maximum.
Speaker 1:So I have a question for you. So I had Blue Cross Blue Shield PPO at the time of my first surgery. I was charged I think it came out to like $9,800 for my surgery. That included the hospital stay, that included the surgery Pretty big chunk of money for me. I'm a retired teacher, right, so it was pretty overwhelming how much it was. But at the same time I knew what I wanted and I knew what I didn't want. I knew that I was going to the right place. The following year, last December, for my second surgery, I had Blue Cross Blue Shield and it was going to be the same exact cost. But I changed to Champ VA, dropped my Blue Cross Blue Shield. I think it was 3000 for the same thing for Champ VA. So what is it that makes the cost what it is Like? Why was I charged $9,500 for my deep flap surgery hospital stay and other people might be charged $15,000? Something like that. What's the difference?
Speaker 2:Right, okay. So first off, it depends if you're using your in-network benefits or your out-of-network benefits. Now, keep first off. It depends if you're using your in-network benefits or your out-of-network benefits. Now, keep in mind. So these are two separate buckets too. There's some people who are like, oh, I hit my in-network out-of-pocket maximum. That means nothing when you're going out-of-network. That's a separate bucket, they don't apply to one another, and so you have to look at if you're using your out-of-network benefits, which just pause, there's many insurances that are in-network.
Speaker 2:At the Center for Restorative Breast Surgery we're just talking about a blue cross, blue shield, which is out-of-network at the moment. But now you're looking at your out-of-network, out-of-pocket maximum. So I don't know what your out-of-network, out-of-pocket maximum might have been. Maybe it was $6,000, was your out-of-network, out-of-pocket maximum. But if you go out-of-network, their contracts with the hospital they pay less, they pay differently than how the in-network contracts would pay, and so the center charges fees on top of what you owe for insurance if you're going out of network. So if you go back, probably, to your invoice from the center, they will say these are fees, here's what you owe plus these fees. So those fees come into play there.
Speaker 2:If you're using your out-of-network benefits. Now the center does something really special that if your out-of-network out-of-pocket maximum is $10,000 or more, you can request a financial assistance form that looks at what you bring home net after you pay your monthly debts, et cetera. So they look at your finances in a different way maybe than others. They aren't just looking at your gross income, they're looking at your. What are you really taking home after these expenses?
Speaker 1:Yeah, and I filled that out.
Speaker 2:To help bring down some of those fees. Yeah, so yours could have been more. If you filled out that form, then it brought it down.
Speaker 1:But no, I made too much money as a retired teacher. I made too much money to get that assistance.
Speaker 2:Okay. It does make that to be a potential option for somebody. So it really depends on what is your out-of-pocket maximum and are you using your in-network or your out-of-network benefits? Now Champ VA. I think at the time you used your Champ VA, they were in-net network, right?
Speaker 1:I believe so From what I understood is that if a hospital takes Medicare, typically they'll take Champ VA too. So not everywhere takes Champ VA and I couldn't. I yeah, I couldn't because well, I probably could have in hindsight I had active cancer. They needed to get me in right away, and we decided to get me in in December of 2022 so that I could get at least the first one done before the end of the year. But then come to find out with insurance, december 31st isn't necessarily the end of that year. Some insurances start in like January or, in hindsight, I probably could have waited until January, had the surgery at the very first part of January and then had the second surgery that December. But that's not how it worked out.
Speaker 2:Okay. So they've got a different contract with CHAMPVA. You probably had a different out-of-pocket maximum and that might work differently than traditional insurance too. So it's their contract with the hospital that brought that down for you Now with a deep flap surgery, if you can, it's best to try to do phase one and phase two in the same calendar year so you aren't restarting on that out-of-pocket maximum.
Speaker 2:Now I did both At the center. They want 12 weeks typically in between phase one and phase two. I inked in at the end of September last year. I got my phase two in mid-December. So about exactly 12 weeks later I got my other surgery in.
Speaker 2:Now you would have said, oh, but didn't you hit your out-of-network, out-of-pocket maximum? Then phase two should have been free. But I was using my out-of-network benefits. So what I was paying in December were fees to the center, which for me was about $4,000. Now what's interesting is that you can tally what you paid in that year for that tax year what you paid for plane tickets, what you paid in out-of-pocket expenses not food, transportation, taxis, any lodging. I did stay for free at the Hope Lodge, but we also got an Airbnb before surgery for those pre-op appointments next door. For those pre-op appointments next door, and so you can tally that depending on your taxable income, you can submit these expenses to your accountant and write off. Potentially, based on your tax situation, you can write off a percentage of what you spent on transportation and your out-of-pocket health expenses.
Speaker 1:That's really good to know. I have written off medical stuff before, but I mean that can make a huge difference and so I'm glad that you mentioned that, especially for people who are listening to this. I want to move into a little bit more, before we wrap up, about when people are looking for surgeons and we are putting a document together which we already have started to put on the website as well. What questions should people be asking these consults? Because I want people to understand that just because they talk to someone in their area, that's not the end, all be all.
Speaker 1:I want people to understand that they are allowed to get second and third and fourth and fifth opinions from different surgeons, and my effort, as you know, gail, is I am trying to seek out all of the surgeons that have that high skillset to be able to do these types of surgeries, and they have to be, they've got to be microsurgeons and they have to have be doing so many of these surgeries every single week. So far, I have interviewed people from Texas and New Orleans, of course, and New York, and I'm on a mission to find where they all are in our country so that, if people say, have an EPO or an HMO, and they can, only they are restricted to a certain state. I want to know where those microsurgeons are. So with the help of you and other people, I'm able to do that. But when people are consulting with those surgeons, what are they asking? What do they need to ask?
Speaker 2:Absolutely. The first thing is how many deep flaps are you doing every week? And if they're like, oh, I'm doing one per month, that's not a good one to go to. I think Dr Kaeveling does probably about four a week. Where we went, those surgeons are just in surgery every day. They come out of surgery and then they have their pre-op appointments with the next patients and then they're visiting their patients in the hospital the day or two after they are living and breathing deep or a flap using your own tissue.
Speaker 2:You want a surgeon who lives and breathes this type of surgery. You don't want to go to a surgeon's website and see all these different cosmetic, the facelifts and the whatever it is all across their site. If they're doing all these cosmetic procedures all the time, then they aren't living and breathing these types of surgeries. You want a surgeon that's so skilled in the surgery this is major surgery. It's major surgery and ideally you're going to someone that works with the co-surgeon that has two plastic surgeons. I didn't even know this at the time. I found it out later, but Dr Cabling had a co-surgeon in there with him helping him, along with my mastectomy surgeon. So I had three surgeons on me, which is why my surgical time for my double mastectomy and deep flap was about six and a half hours.
Speaker 2:That's another thing you want to ask is what is the average time for the surgery? What's your average? Things can go wrong. There can be problems that extend the surgery. You could be a very complex case. But on average, run-of-the-mill average, what's your average time? And if surgeons are quoting 14 hours, then no, go elsewhere. There's another way. Another question do you ever take muscle to harvest the blood vessels? Would you use abdominal mesh? Now, sometimes there's a reason to use mesh, but it should be a very rare reason to use mesh. Maybe if you had, like a prior hernia or the center they mentioned. They have about like five pieces of mesh there. They're not abundant in it. Sometimes there's a reason to use it, but on average, if you have multiple nonlinear perforators, are you skilled in the apex flap technique? Or are you needing to convert to an MS tram and take muscle? And are you using mesh, and why? I know it's a big question, but it's a very important question.
Speaker 1:So your surgeon, if you ask these kinds of questions, they're going to know that they cannot bullshit you and so like, with your surgeon saying, kind of dancing around this, I may have to take some. You're getting a deep, but kind of dancing around the issue that you're actually getting a tram as well. If you have these questions, you're more likely to find the answers and to get exactly the surgery you want from a surgeon that is highly skilled and will speak to you truthfully and knowing that you understand what it is that you need and want. I hope that made sense. Yes, absolutely. That's why I didn't know the questions to ask, gail. I did not know the questions to ask. I went on blind faith of three people luckily two people who went to center for restorative breast surgery and I went on blind faith of talking to the center when I was consulting with them and I went on blind faith of getting Dr Wright as my mastectomy surgeon and Dr Cabling as my deep flap surgeon. I want other people to be more knowledgeable than I was, absolutely.
Speaker 2:And another important question to ask is their success rate. The surgeons at the center have a 99% success rate and that's what you want. Now the thing is, 99% doesn't mean 100% and a flap can fail. But another question to ask is if a flap fails, that can happen. Flaps fail on women. But what would be potential options if a flap fails? Do you have another donor site that doesn't take muscle to use there, not a latissimus flap that takes muscle. But I like to find out if that surgeon is skilled in an alternative flap like S-gap. Like to find out if that surgeon is skilled in an alternative flap like S-gap, which is another flap that is kind of like from like the upper butt area where they can take that fat and take the blood vessels. I know of actually two women who had failed flaps and one just got an S-gap and another one is scheduled in a couple of months to do S-gap. So for the women who don't want an implant still, what are my options if this flap fails and if that surgeon isn't skilled in using an alternative donor site that doesn't take muscle, also worth consulting elsewhere if you want to stay with the same surgeon and highly recommend the surgeons at the center, dr Sullivan, he at the center, he even he developed the S-gap flap. I know Dr Cabling does S-gaps, but it is. I think it's just really important to know what are your options if the flap fails. And then I also ask the options for like your nipples, like if nipple sparing mastectomy, or can they do an areola sparing mastectomy. What are your options there regarding your nipples, as well as the oncologic risk and how they spare that nipple, if that is an option for you?
Speaker 2:And then a big thing is you need to see pictures. You need to see pictures of their work. What are pictures of their before and after? There's so many women where I see the pictures and the incision is so high and the center. What they do is they offer scar lowering in phase two, which is that cosmetic cleanup. But look at work and compare. I mentioned this earlier. But to look at their website, is this something that they live and breathe? Is this what they're doing? Is this what they are dedicated to doing? Those are my top questions. And if someone doesn't feel right, this is your body, right, you do not have to use them.
Speaker 2:And if insurance is the one that's hindering, there is a way. There's a way to figure out the insurance piece. You have to be willing to jump through a lot of different hoops, but there is a way to figure out insurance. There's single case agreements available and also for the women who are told that they don't have enough tissue to do this surgery, they might be a candidate for S-gap, they might be a candidate for an alternative flap or some of these women still might be able to do a deep.
Speaker 2:Even my surgeon here locally was hemming and hawing about the amount of tissue I had and telling me that maybe I would only be an A-cup if I did this surgery. I came out the size that I came in with when I went to New Orleans and even in phase two they even made me bigger because they were able to extend my incision behind me and take my hip and upper flank fat. When you have a more knowledgeable surgeon, then you actually have better ways to achieve the size that you're looking to do. Even asking that surgeon if they are skilled in a stacked flap if needed. I know they do that in New Orleans where they can stack on like a T-dap flap to give you more volume if needed or a way to avoid an implant. Now they also do implants there, if that is what you want.
Speaker 2:I know some women have gotten an implant there too. But you really want to understand what are the options on the table and what is the skill set of your surgeon. And it's okay to be picky and it's okay to get multiple. It's recommended to get multiple opinions because what you want is to make an informed decision. You wanna go gather multiple opinions and you can do remote consults. There's places that do remote consults. I live in Oregon and I didn't travel for any of my consults.
Speaker 1:I just consulted with Center for Restorative Breast Surgery and I did that remotely. One of the things I really love about Dr Cabling is is that when he came in the day before my surgery he had mentioned something about an implant and I freaked out. I looked at my husband. I'm like I go. But Dr Cabling, that's why I'm here, I don't want implants. He goes, I get that, he goes, hear me out.
Speaker 1:He showed me the difference between an actual implant for the whole reconstruction and then a hybrid implant. And he said here's the thing. He says because I did have lack of tissue and because I had just lost like 33 pounds the year before. And he said when we do the reconstruction, he said, if we don't have enough tissue, you're going to kind of have this sort of pancake-y look. And I'm like I don't want pancake-y look.
Speaker 1:And he says but the hybrid implant will go behind. I think he said it was behind my muscle. He says that you won't even know it's there. And he says and you won't even feel it, and the breast itself. You will feel your own tissue, your own skin, all of that.
Speaker 1:And he says but here's the thing I will do, whatever you would like. You might be a little bit smaller if we don't use it or whatever, but here's my phone number. And he gave me his phone number. He put it in my phone. He says I want you to go, I want you to have a good dinner. I want you to think about this. If there's any reason whatsoever that you are like, nope, I don't want to do this. He says, just simply send me a message If you have any questions, send me a message. And he says and we will do whatever you feel is right for you. And that made me feel so much better about Dr Cabling. And to this day, if I have a question about something, I feel I can message him and he will answer the question or send me to somewhere where I can get that answer. So I sing the praises of Dr Gabley.
Speaker 2:Absolutely, Absolutely. He's fantastic. And what really struck out for me is when I came in for phase two, I asked him okay, what are like, what are we doing tomorrow? What are you doing tomorrow? And he said well, what do you have a problem with? What bothers you? Like he wants to listen to the patient, versus come in and say automatically what he's going to do.
Speaker 2:It's just a breath of fresh air to have a surgeon that's there to listen first and to care about what you want, even if they may have had a different idea in their head. And I think that's really important to find in a surgeon when you are interviewing surgeons is to listen how they're speaking to you and are they listening to your wants. I think it's so important to really kind of feel like how do you feel about this interaction? Are you leaving this appointment crying? And if you're bawling in your basement after an appointment, it's a good sign that that's probably not the right surgeon for you, assuming people have basements.
Speaker 1:Yeah, Well, I will tell you that the interview that I had with Dr Cabling is the highest listened episode that I have, and so people learn so much. I've even had people reach out to me and say hey, I ran across your podcast. Thank you so much. Because of your interviews with the surgeons, including especially Dr Cabling, we have a better understanding and we have a plan for where we're going to do the surgery so well. I just feel incredibly fortunate to be in connection with somebody like you, Gail. You have provided such amazing information and I know that you are open to having people contact you if they have questions. I will have your contact information in the show notes. Is there anything that you can leave us with? I usually ask people what is the biggest piece of advice, and I want to go back to before anyone even gets breast cancer, because, again, there's so much I didn't know. There's so much you say that you did not know. What kind of advice would you give people that have never even had breast cancer?
Speaker 2:I mean in regards to breast cancer. I would say get to know those BI-RAD scores and make a patient portal account where you get your imaging. Read your reports, chat, gpt each word that comes out of your report. Learn about your body and because you might see something in a report that someone else misses like even in my CTA scan they found nodules on me. No one called me about these nodules. I pulled up my report and read it and made the appropriate follow-up appointments with the correct doctors for those.
Speaker 2:You can't just assume that the doctors are reading everything too. You need to take control of your own health and get to know this information. Also, really research your plans, your plans available. If it's a small group plan from a business, you have to watch out for limitations. Read your insurance plan details. Read those limitations and exclusions. Meet up with a health insurance broker and don't make your insurance decision lightly and get a PPO plan without of network benefits. You don't know what's going to happen in life and you need to have that option. And if you don't have a plan available, contact me. You know, because I'm working to make federal health care reform. I'm meeting with senators, I mean with representatives. I'm having the Robert Wood Johnson Foundation refresh a study showing the decreasing number of out-of-network plans PPO plans with out-of-network benefits on the marketplace. There's change that can be had and if you don't have access to the right type of care, come join me in this fight, because I'm working to fight for health equity and increasing access to care across the country.
Speaker 1:I love that, and there's just far too many people who are not paying attention. It just sort of letting other people make decisions for them. They're not aware of how insurance works, they're not aware of how government works, they're not aware of just how decisions on every part of your life is made. It's important to be an active participant in your life, right, and so thank you for that. And so I know, whenever I have a question, I know who to reach out to, and that is Gail Manasco, because you have definitely educated me on so many different things, and that is why I'd like collaborating with you.
Speaker 1:I'm glad that you are essentially a part of my nonprofit in so much information that can help other women and men for that matter. So thank you so much, gail. I really appreciate your taking the time this morning to have this important conversation, even through some technical difficulties, hopefully we can splice all these video and audio together, all right. Well, thank you, and do you have anything else to say before we disconnect?
Speaker 2:I just again just want to say thank you for the work that you're doing, the time you're pouring into this, and I also just want to just say that I am I'm not a doctor, I'm not a surgeon. I could have said something that's it's incorrect. I am a person that just likes to read and do her homework, but definitely consult a medical professional about your own individual case.
Speaker 1:And all the information is verifiable, so people can actually find out for themselves too. All right, thanks, gail. Well, to my audience, I appreciate your tuning in again to this episode of Test those Breasts and we will see you next time on the next episode. Bye for now, friends. Thank you so much for listening to this episode of Test those Breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open to guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value, so please reach out if you'd like to collaborate. My contact information is in the show notes and, as a reminder, rating, reviewing and sharing this podcast will truly help build a bigger audience all over the world. I thank you for your efforts. I look forward to sharing my next episode of Test those Breasts.
